Long term side effects of interferon

[Melvil]

Dear all,

My wife was treated for her HCV in 2001 with interferon plus ribavirin. She was like a guinea pig and now, 8 years after, she is living with side effects that have never gone : hypotension (around 8), fainding every day, unbearable headaches, kidney pyelonephritis every months, and an exhausting fatigue that keep her in her bed sometimes several days, where she can hardly eat alone. Before that, she was so full of life, making car races, flying planes, being a model for photographes, and photographer herself. All the physicians and experts that she met told her that it was impossible to be due to the Interferon treatment, but before the treatment, all went well. She is so exhausted that she can't fight no more against medical community in order to admit the origin of her symptoms and to push them to try to find a beginnning of solution.
Is there any progress in the comprehension of the cause of these symptoms ? Are there some new treatments that appeared recently to counteract exhaustion and pains ? Do people group themselves in associations to better fight against this disaster ? Would you have some testimonies, books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ?
Any information will really be of great help,
With my best regards.

[speed502]

Although I don't experience the same long term sx as your wife I have little good to say about my post tx sx. I tx'd in 2000 with Inf/Riba combo and can truly say I felt better pre tx. That said, sometimes these questions don't seem to get as many replies as others because, I feel, some folks consider questions concerning long term sx as taboo. I don't know of any tx or groups dedicated to this subject but others in the group may be more helpful. I've learned a lot just by browsing here for years just not much about this. Best of luck to you both.

Speed

[seabean]

You are not alone, I too suffer from extreme exhaustion and lots of long term side effects.  I agree that it's hard to fight the system but you have to keep trying!  Keep checking with different doctors...........at least that's what I'm doing, it just is NOT normal for an HCV SVR to experience this much fatigue (there must be something else wrong).

You sound like a very caring man and she is lucky to have you.  My best to you and your wife.

Seabean

[Melvil]

Dear Speed502, Seabean and Trinity4,

Many thanks for the time you take to reply and comment. Encouragment are so important, even after 8 years. We realize that she is not alone in this case, contrary to what doctors used to say, explaining that it was impossible to have IFN side effects many years after the end of the treatment. It is for her like a recognition that, no, it is no a psychological symptom or an absence of will (those who really know her have never had doubts as she has an exceptional mindset). We really understand what you can feel and what you have been through. We will keep you posted with news (hope the best ones),

Warm regards from France

[froghunter]

Hello from Georgia, I am in the same boat with after effects and it feels like no one wants to really talk about thew problem.I have been looking on the web and it has been some help. You can find hep c groups but a group for those who are clear but feeling side effects.It should be googled. I will look and hopefully.Be able to help us all. I was a law enforcement officer and had to retire due to after effects. I was 54 when diagnosed and had to be at the top of my physical abilities because I was a specialized case officer that was required of me. I was involved with a lot of training of new young officers and was always able to out do them and laugh with them about this old man showing them that they need to be realy strong to do the job they where about to except. But now I am no longer in good health, atlo of weakness and can't keep up for a brisk walk. I have a lot of issues. I was not able to access state help and was abandoned so I went to a clinical trial due to cost of meds, my age dictated the 40% possiability of remission, and was given 4 times the normal meds. My hep c is the type that can't be cured it just goes into remission and can come back later in life. I hpoe and pray for you and your wife, but it is hard to realy understand what is going on if you haven't been there.

[Kathy73]

What type of C do you have? I haven't heard of a type that can't be cured, but I'm relatively new at this.

[hepcD]

I can honestly say i feel good. TX had its downs but 2 yrs post tx. I feel as good if not better. I am living my life and forgetting about hep c. If you hold on to the tragedy of having contracted a disease which could have killed you. You can never free yourself from the fear of it. TX is hard on everyone. But you need to heal your mind as well as your body. My liver is in better shape since txing. Hep c is on the verge of being just another treatable disease. I feel peoples pain when they tell the story of how hep c and treatment has ruined their lives. I took the tx and glad i did. I felt good before i knew i had hep c and i feel good now that i am free of hep c. That is what i focus on .

[Melvil]

Dear all,

Froghunter, we really sympathize with what happened to you, all the testimonies from you and others people are so closed from what my wife is living. Before she was diagnosed at 38, after a period of tiredness, she was an incredibily dynamic person, flying planes, riding motorbike and race cars. The treatment, six months, was like hell, but she was sure to recover her health and had a lot of project. During that period, she wrote a book that was published after. We she got the results that proved she was clear of virus, side effects were installed (hypotension, exhaustion, faintings, headaches, kidney infections and so on). She thought it was a question of time and was patient. From that moment, she did all efforts to recover, with the same bravery that she has always had in her life. She became a model for photographs, even if some photo sessions were exhausting for her, falling in fainting, and tried to have a "normal" life, but today, eight years after, symptoms are still there and physicians and specialists she met have given up, refusing to link her actual state of health with her previous treatment and failing in searching deeper. She goes on fighting and we will never give up. But today medical research on this real pathology (I mean side-effects from IFN treatment) is peanuts. Yes, she is clear of virus and alive, which is a wonderful news for her and me, but she has another fight to give against her body, administration (which does not recognize this case as due to treatment) and sometimes against the medical people who do not realize the level of suffering she daily bears. I continue to search in scientific papers teams that are working on this topic and all medecines, plants or molecules that could bring an improve for this state and I will let you know all news I will find.
I really agree with you Froghunter when you writte that "it is hard to realy understand what is going on if you haven't been there". We hope to have good news from you and I will post news soon,

Warm regards from France      

[altaroy]

I did a clinical trial in july of 07 ,Albuferon and Ribavirin. I have just returned to work after 21 months off due to sides. I have severe joint and muscle pain as well as fatigue and dont know how long I can keep working, My employer does not understand and neither do my doctors want to admit this. Funny they stopped giving full doses of the Albuferon a month after I finished due to sides. Now they say cant be from treatment.I am very frustrated as I cant get anywhere with docs or job. My wife has been a rock throughout.I wish you all well. Roy,Alberta ,Canada

[Melvil]

Dear Altaroy,

We wish you to recover as soon as possible, having someone strong besides you is something very important. Froghunter wrote that "it is hard to realy understand what is going on if you haven't been there", but love and empathy from a wife or husband is essential, not sufficient, but mandatory to face all these hurdles : fight against suffering, fight againts doctors and administration, fight to keep a job.
Our best to you and your wife.    

[altaroy]

  Thanks for your well wishes. All the best to you and your wife as well. It is very frustrating to try to get through to people that have not been there,everyone tells me well you look good and of course the old well everyone hurts, I do too. I will stay positve and keep on fighting. I am thinking I may have to change careers though as I can not work shift work or run heavy equipment anymore.Night shifts are out of the question ,it is hard enough working half days right now.Take Care and I will keep fighting . :O) Roy

[Melvil]

What you say is quite true, it is very frustrating to have the feeling that some people believe that you are exaggerating your exhaustion, doctors, administrations and some members of the family too. My wife has such a pretty and nice face that she looks in good shape (but with a blood pressure between 6 and 9 !), and sometimes even those who know her well believe that it is only a question of will. They do not understand that exhaustion is an insurmountable barrier, and that with the best will of the world, you can't do more. She worked half-time two years long, but was brought to the emergencies two or three times per week due to fainting. Now, she does not work no more, and this is not at all her favourite situation, she was so full of energy before the treatment that nobody could follow her. But, like you, she keeps fighting, with some periods of less exhaustion, never as before, but enough to be able to go outside and live "normally" during few hours. We keep hope as more and more testimonies like ours will make things happen for medical community to better take this pathology due to medecines side effects into account.  

Warm regards from France      

[otterwatcher]

Yes I don't feel as well as I did before the interferon/ribavirin treatment-extreme fatigue,vertigo and muscle/joint pains being the worst side effects-my specialist nurse likes to use the expression "symptomatic" when I ask her about it whatever she may mean by that!!! I completed treatment 'successfully' in 2007.I've been hoping that someone else would come forward regarding side effects from this toxic treatment-there is just no information out there and I agree that the medical profession are not listening to us-I expected my specialist nurse to listen to me and take note but not at all-they don't seem to be interested in any long term feed back-maybe they're scared of what they might have to publish??? Do let us all know how your fight with getting heard goes.We all need to SHOUT A BIT LOUDER!!! xxx

[altaroy]

Thats one i have not heard"symptomatic". I get looked at like it is all in my head. Have been told so by a GP. I had a meeting with the manager at work today and he aske dme if I was getting better. I said no physical work makes me worse and they still dont get it. I am now trying to get an appointment with my specialist to shout louder some more.I wish there was a place we could all "SHOUT AT THE DRUG COMPANIES AND DOCTORS". I have spoke to many others on different sites in the same boat and we all seem to get treated the same.  Getting Frustrated in Alberta.......

[JAP23]

I took my treatment in 1997, and I am still suffering side effects. The treatment was not successful then. Now in addition to the side effects, now I have the symptoms of a much deteriorated liver, so of course life was better before the first treatment, but it is not only the side effects it is the condition of your liver that must be getting worse after so many years (unless you successfully cleared the virus then). Every morning for months I wake up in pain, severe pain, eveywhere, I can barely move, but after a little bit its intensity drops and it keep dropping during the day, and I am able to maintain a very energetic life. I get bouts of fatigue too, and other symptoms. But everyday I am also blessed by so many things, family, friends, that I feels profoundly happy. Much of living depends on us, how you take life. Certainly, some days are dark, but even on those days you must pull yourself out counting your blessings. I am happy and thankful to be alive, and looking forward to enjoy to the maximum every day that remains. And of course will fight to the teeth to make sure I can get the most days I can. Good luck and bright days for you!

[Melvil]

Dear all,

Thank you for your testimonies and answers. Probably medical community is embarrassed because they know or they have doubts about these long term effects, but pharma companies are powerful in this community and, most of all, they have today nothing to propose to recover from this. As they don't want to loose money, they turn a deaf ear to reality. Believe me, the day where these companies will have identified a treatment for side effects of IFN, they will recognize the long term effects as a reality and propose the way to recover from it. This is a cynical attitude we have to face.
I tried to find scientific papers that deal with this subject and they are really not numerous. Just few recent articles claim that there is probably a risk of deleterious effects of IFN on brain, especially in an area named basal ganglia, as IFN will promote pro-inflammatory cytokines likeTNF alpha, which can alter basal ganglia function (Raison et al, Mol Psychiatry. 2008 Jun 3; Majer et al, Brain Behav Immun. 2008 Aug;22(6):870-80).  Briefly, there is a significant flattening of the diurnal ACTH and cortisol slope and increased evening plasma ACTH and cortisol concentrations. Flattening of the cortisol slope and increases in evening cortisol were correlated with increases in depression and fatigue. But these scientists made these observations on subjects during the treatment, which was stopped early and the effects were reversible. I found no study on the long term effect, if they could be reversible and how.  
We are alone facing doctors and drugs companies insincerity, but we are not alone in our fight, as all of us can bring a "stone to the building" as we say in France, contributing with his own experience and that is a lot. I will go on keeping you informed of all we will find as tracks for cause or treatment of this pathology (because it is a iatrogenic pathology) which is so deleterious for those who are victims of it.

All our warm wishes from France    

[seabean]

I really think that my doctors believe me regarding the fatigue, pain, etc., they just do NOT know what to do for it!!!  I even contacted the company that makes Peg-Intron (which is what I took) and they told me that yes, some people experience these side effects even after treatment.  As my doctor states "may not be the HCV that kills you, but the tx".  Great, now that I've already finished and cleared the virus.  My life is lived each day at a time, just hoping that the next will be better!  It's all we can do, for now:-)

[altaroy]

  Thank-you all for your replies and encouragment. It is nice to know that I am not alone feeling like this. You sometimes wonder if they are right and it is in your head. Keep my chin up and move forward is all we can do. Take Care  :O)  

[Lady Lauri]

Melvil....Hello, haven't 'met' you as I haven't been able to keep up being back in the 'real' world, websites,business,  family illness .....to be able to be here much lately, but I treated in the same trial as Altaroy, this site was a God send and met many wonderful people here. I'm sorry your wife is dealing with these issues and agree with Seabean, very good husband :)

I am just coming in from a 13 hr. work day and saw this. I have much to add to this, just too exhausted to make sense! Even in reading replies. I do think this subject should be discussed here as well as all pro's, con's of treating. I am 14 mths post tx and life is no where near 'normal', mentally or physically. I'll go into more in the AM. I wanted to ask anyone posting here to please state their Geno type, tx time, doses.

Altaroy, hello also!.....were you Geno 2? As I started that trial in Oct. 07, the last day allowed to start. I drew the SOC tho and did Interferon w/ Riba. Was reduced at week 5, then again at week 11. Remained on reduced doses through the 24 wks. I am dealing with the same issues as you are and also concerned I can not continue with the work I do. I'll post more tomorrow. I wanted to ask all to post their stats in their replies.

Back tomorrow, good to 'meet' you and hello to all!

LL

[altaroy]

  I was Genotype 3, 24 weeks, full 1200 mg dose throughout,which they discontinued a month after I finished.Finished Dec.07. Nice to meet you as well,finding more and more of "us" all the time. Talk to you later    :O)  Roy

[otterwatcher]

Yes it seems strange that there is little follow up investigation done by the medical profession or at least that seems to be the way in the UK.I felt like I walked blindfold during tx-no information anywhere-even/especially from my specialist nurse.I never saw my liver consultant at all.The only contact I have with the hospital now is to have a viral lode (sp) test every year-that's when I hear the "symptomatic" term used.Finally this year my brain is not so clogged and I will ask "of what" this time I promise! However that's not til October.
I think we just have to accept that this is how it is and as good as it gets.The virus did a lot of the damage and the tx did some more,some folk suffer long term side effects that the pharm companies would rather not know about.
I hope the weather is good in France,it's damp here on the Welsh side of the border xxx

[altaroy]

  Hi everybody, I went to an internal medicine specialist on friday and he says I have fibromyalgia from my albuferon/riba trial. That explains the fatigue and severe pain. Goona try me on lyrica,if that does not work cymbalta. Tells me only helps one in five. Informed me I may never work full time ,if at all. Any thoughts or sugestions would be appreciated. Thanx and all the best.  Roy,Alberta ,Canada

[madaximus]

I found out I had Hep C about two years ago and decided to under go tx in January with pegalated interferon and ribavarin, wich the manufacturer provided free, due to my income and lack of insurance.  The tx was tolerable but after 7 weeks my WBC count and neutrophils where dangerously low.  My options where to start weekly getting injections from a hematologist or discontinue tx.  I felt fine before tx, but wanted to beat the virus, for many reasons.  Now my liver hurts often,  and I'm worried the tx may have made the virus stronger.  At least I gave it a shot, and I'm sure many of you have had worse experiences.  If anyone would like to share their insight on this with me that would be great.  I haven't even told my family(their in another state) I have hep c, and I've only told two people(besides medical personel). So i've been going through this all alone.

[Babs1469]

I've heard that the liver is a "non complaining" organ in as much as it doesn't have any nerves that feel typical pain but someone on here posted that it is the reason the boipsy didn't hurt. I've had two liver biopsy's and I was in so much pain almost didn't get through the second time. I guess we are all just different in how we experience the disease but it is nice to know there is support and we are not alone, no one should have to go through this alone.

[otterwatcher]

Most folk I've spoken to still have some ache or dull pain in their liver even after successful treatment.I was convinced the virus had returned when it started but am now 2 years virus free and still affected.I was geno 3a did 24 weeks of the full dose interferon/ribavirin.I'm delighted that after 20 years I have cleared the virus but at what cost to the quality of my life? I didn't tell my family about the treatment either Madaximus but had 2 good close friends to keep me sane.

[HCVSuperMom]

I am in week 30 of tx and have genotype1. The virus has been udetected since week 8 of tx,interferon/riba/boceprevir study. I have been experiencing liver pain as well.Sometimes a dull ache and sometimes a stabbing pain. I used to keep my hcv status private or secret as well, but now I don't care who knows because I need all of the support I can get! People need to be educated about this virus and the toll it takes (physically,emotionally,mentally) on those who are fighting this devil!

[iamchimera]

I don't understand some things you all are saying at all. Did you not read up on the side effects before you began treatment? Did you not do any research at all? My mother was treated in 98 with experimental. She has some lingering effects, but she understood it was a risk. One that would have been well worth it if she had cleared. Oh, and I am not just some unsympathetic onlooker. I was diagnosed in 2001 with genotype 1a. I began treatment with a viral load over 2 million in Oct. 2006 and ended Oct. 2007. I was fully aware what the side effects would be anfd that they may or may not go away at the end of treatment. Don't be mad at drug company be mad at your Dr for not better informing you  

[iamchimera]

I don't understand. Did noneof you read the list of side effects that may or may not go away?

[altaroy]

I am sure everyone read the risks and possible side effects . Some people just like to talk to others who are feeling the same. My doctor told me it was a breeze and I could work through it and would be fine. I hav efriends who were fine and others who had a rough time,understand now????

[Lady Lauri]

Hello all! Hello to all my past friends here  :)

I am a post txer, this site saved my sanity and possibly life!  I'd have never made it thru tx if not here. All you can read, research, be told by your Dr. can still not compare to words, experience from someone that HAS felt the sides, lived them. My excellent Dr. has NO idea how bad I felt as he never did these drugs. Cancer has it's stages, 1,2, 3, 4....one can go into it knowing the odds better. Our only odd's are geno types. For some reason, not one cancer patient I have been around, and it is many, has had the post tx issues I have seen here, with hep C. Interferon is sometimes used in cancer (but not this type??) but Riba is not. My gut has always felt Riba is the culprit in our post tx problems.Yes, I, as many , researched my little fingers off but these drugs, this tx is a total roll of the dice....there are NO exacts in this illness, the drugs, tx, or the outcome.
1. works for some, some not. Geno 1's have the worst odds with no explanation of why it works for some Geno 1's, some not.
2. tx sides debilitate some, some not.
3. post tx is wonderful or hell for some!
4. Permanent damage for some, some not and so on.
5. Liver damage progression can not be 'rated'. One can have it 30 yrs, and have stage 1, while another can have it 10 yrs. and have cirrhosis.
    One can be stage 1 for 10 yrs, yet the other go from stage 1 to stage 4 in 2 yrs.

That said, each person does make that choice to treat or not. Not one of us here can say to another ...'you will be sick, your body will throb, your hair will fall out' ...or ..."post tx you'll feel great, back to normal in no time' etc. We can only tell our individual experience and help another make their choice. I did 'only' 24 weeks, am 17 mths post tx and still have issues, do not feel 'normal'. My 1st yr, post tx was very rough. even the symptoms of Hep C were not as bad as I felt post tx. BUT.....I am SVR and will learn to live with any issues as I choose tx, even with risk, it was the lesser of 2 evils for me and my odds were so great. (To SVR, Geno 2b). I would make that same choice today. But I DO want to learn how to cure or handle or counter effect the issues I still have now.
None of what anyone here said or anything I said takes away any persons suffering now, from post tx issues. Thats why we/all are here, to listen, learn, support, comfort. YAHHHHHHHHH to all post tx with SVR and feeling great and...... 'we're listening' to any that have post tx issues and need to talk, get advise. If none of us come here and tell our stories post tx, anyone new will not have that knowledge to make their choice. Many here feel anyone with hep C should immediately tx, I do not. Each of our opinions matter to anyone coming here to make that choice.

In no mean spirited way at all......anyone's comments concerning post tx problems should not be dismissed by 'you knew the risk going into it'. We also knew it could have went the other way, no post issues, no bad sides, etc. Most with post tx issues wish there was more research, follow up in this as with myself, and many, we are 'dismissed' upon EOT and any issues are blown off, not followed up, not taken seriously when we suggest it was caused by tx and so on. I did not have these issues before tx, the odds that I developed all these things while on tx 'naturally' are pretty small, yet still I get all negative replies when I suggest that (to a Dr.)

It is the risk we all take upon treating, we need to be there for anyone that does get the down side of these risk post.


LL

[Lady Lauri]

Hi again. I am MIA from here, all internet this year. Too busy and sorry for that!

I didn't draw the Albumin Interferon in that trial, did the 'regular' interferon and I also still suffer with muscle issues a lot. My job is very hard these days also. I'm 17mths post so about to start getting into more testing to see if they can explain this. Without going into another thread here, it is mentioned here that interferon can bring on underlying auto immune diseases, so possibly you have also developed one? I'll be sure to keep you up on anything I determine, come up with, so you please do the same.

Be well, LL

[alagirl]

Really glad to see you reached SVR!

[altaroy]

Thanks Lauri, I will be sure to keep you informed. I have just tried celebrex with ralivia and all it managed to do was make me a zombie all day. I would rather live in pain. My Doctor suggested I go back to southern BC wher I am from, feels that the weather and no stress from my legal issues with my employer will help. We are leaving Sunday as the wife has recieved a good job offer there. We spent last winter there and i felt much better than here in the Rockies. I have 2 close friends that treated and 1 breezed through and the other is worse than me. My doctor says I rolled the dice and I although I acheived SVR , I may have to live in pain for good. I wish everyone well and will talk to you soon . :O)  

[Lady Lauri]

Alagirl! hello sweetie :) I have missed here, many of you and so glad to see your still here! And thank you! I wish those 3 letters for ALL someday very soon!

Altaroy....I said h*ll no to celebrex, my dad ended up in the hospital on it and I research every med I am ever given, even antibiotics, which isn't always a good thing. Bit of a drug phobia I guess. Upon news of Hep C and having to do these drugs, my family was sure I'd never be able to. Two went with on 1st does day to hold me down and the door closed , lol, but I said 'gotta do it' and slammed them!

Yes we rolled the dice, and won, actually, but I still feel SOME answer to pain is needed. Just give me a reason for it! Pretty much like my years of going to Dr.'s before Hep C dx and stressing over and over saying 'SOMETHING' is wrong and being told 'your depressed' (NOT) or it's in your head! Getting the dx was a relief, just knowing, while going 'oh sh*t' too, of course :)

P.S. I don't see on your profile where in the Rockies you are, but I would trade Fla.to go back there in a heartbeat! Lived in Colorado for yrs. Love the rockies.

Good luck in all this, truly, LL

[altaroy]

We are in Hinton,Alberta till sunday and are on our way to Penticton ,BC,about 50 min north of US border in the Okanogan valley. Canadas Fruit and wine belt.I tend to research all drugs I am given as well. I also was told  "it was all in my head for 10 years before DX .Will keep you posted ...be back in about 2 weeks .Take Care all  :O) Roy

[ponyshel]

Hello all and I haven't posted in a year or so. I was a geno 1a with starting viral load of 6 million and some..I treated for 72 weeks with peg copeg...My life was much better before treatment. I am now post 2 and a half years and still svr. I had terrible post tx side effects and had  lyme disease ,septic arthritis(almost killed me)  and now I am dealing with an autoimmune arthitis called anklyosing spondlioarthropothy. I am facing treatment with possible death and reactivation of HCV. And here we go loop to loop...I haven;t made a definitive choice on the treatment for AS. I suffer with chronic debilitating pain,swelling of knees,feet,ankles and great fatigue...did interferon activate this rare disease? yes very possibly...If I had to make a choice to tx again? NO!...I was a different person before txing and have never recovered. I wish they would do more studies on post tx after svr. I would be very interested in it. I wish everyone the best of luck in their choices and a pain,fatigue free life...best wishes to all! Shelly

[Melvil]

Thank you Ponyshel for your testimony of what you are living from your treatment. My goal is not to point out the weaknesses of doctors and blindness of pharma industries. I want to share what happened to my wife, first to know if se was alone in this case (and what I can read here shows me the contrary) and second to try to share knewledges on possible causes and treatments. From what I read recently, some papers have explored the possible brain damages of IFN and their symptoms. Here are the names of the articles, I can't give direct link, you have to go on Medline site (http://www.ncbi.nlm.nih.gov/PubMed/) and writte the title in Search/for :

1. Raison CL et al. Interferon-alpha effects on diurnal hypothalamic-pituitary-adrenal axis activity: relationship with proinflammatory cytokines and behavior.Mol Psychiatry. 2008 Jun 3
2. Majer M et al. IFN-alpha-induced motor slowing is associated with increased depression and fatigue in patients with chronic hepatitis C.  Brain Behav Immun. 2008 Aug;22(6):870-80.
3. Capuron L et al. Basal ganglia hypermetabolism and symptoms of fatigue during interferon-alpha therapy. Neuropsychopharmacology. 2007 Nov;32(11):2384-92.

To resume these 3 papers, it seems that treatment wth IFN (plus ribavirine) for hepC was associated with significant flattening of the diurnal ACTH and cortisol slope and increased evening plasma ACTH and cortisol concentrations. This disbalance in cortisol daily cycle can be the cause of depression and fatigue. According to the authors, the mechanism underlying are not today fully understood. What we can presume is that changes could be induced in a specific area of the brain, named the basal ganglia. Altered basal ganglia function may contribute to IFN induced neuropsychological and behavioural changes like fatigue-related symptoms. All these observations were done during the treatment, never months or years after.

Do some of you have done blood measurement of cortisol daily cycle (at least measurement at 8-9am and 8-9pm), and, if so, did you observed inversion of the levels, as they observed in these studies ? We intend to do it with my wife, but it takes time to convince doctors, even with strong science based proofs like these papers. I make a survey on this topic and each time I will find new results by researchers, I will share them with you. I hope all of you feel as well as possible,

Kind regards from France

[hepman]

i was so sick be fore tx that wen it was over and i got over the meds i had a good few months im   hep c ---1,a ---stage 4  im no expert. tx is ruff stuff, it can cause allot  but cerosses of the liver and all the other complications  that come with it no buddy knows Wat couses which problems  hep c and liver support groups help in so meny ways for me  i have talked to people with new livers and thy feel grate like new??  its not a perfect world but wear not alone wen we come into this world and wear never alone wen we go out no matter wat we do not under stand.  jim

[ponyshel]

I will look into those studies and all I know is that my hubby and daughter sometimes laugh (instead of cry) due to me not being the same person during and after tx. I often lose days.and my forgetfullness has me worried sometimes. I questoned my endocrinologist about possible damage to my pitutary gland as i battled for a year until my thyroid came back. I did a RAI uptake scan and afterwards the ole thyroid kicked back in however it was uncontrolled for 2 years during tx. Nevr the less I no ;onger see him as he said I should have no more problems and haven't as of yet. I will post again asI gather my own insights on post tx issues. Best of luck to you and your wife.

[alagirl]

I am facing treatment with possible death and reactivation of HCV.
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Are you talking about if you decide to go on a biologic or immune modulating drug?  I can tell you that studies do not conclusively show that this can happen (the hcv recur just due to those meds) and even IF it can, it is exceedingly rare.  So rare that there are few cases of this for them to even write up and speculate about.

I have some ai issues and I'm waiting for diagnosis.  I would take a biologic in five minutes without worrying about recurrence of hcv.  Probably, I have some type of seronegative arthritis such as a.s.  I also have an ai blood disorder.  I'm glad I'm SVR and I'll do what I need to do to treat these autoimmune issues as well.  In my view, the ai problems are still better than the alternative.

[Melvil]

Thanks for your post ponyshel and we wish you to recover step by step as we try to do for my wife. Actuallt, Actually, we are focusing on coenzyme Q10. I made a review on Medline about the benefical effects of Q10 and some of them can focus on the same symptoms as what you or my wife have. In a recent paper, a Spanish team observed that Q10 blood distribution was altered in patients with fibromyalgia (Cordero et al, Clin Biochem. 2009 May;42(7-8):732-5). Fibromyalgia is often observed as a consequence of IFN treatment (I read in MedHelp some posts of people suffering from it). But is it a cause or a consequence ? Nobody knows today. Moerover, Q10 has shown anti-inflammatory effects on some markers which are the same involved in the brain processus described in the last papers I sent you. Q10 is not water soluble and must be taken as emulsion or must be taken during meals (fats from food helps to improve its bioavailability, there are some studies on it). The effective amount is around 100 mg a day, but must be taken during a long period (several months). So, we will try Q10 as soon as I got a few of it. We know that it is not the only solution (as no ingredient, plant or molecule alone will be the solution), but it is one of the tracks to follow to break this vicious circle of pain-exhaustion-fainting. We will be absent one month, but will tell you if this Q10 was a good adjuvent or not.

Kinds regards from France

[karentaliesin]

thanks for your experiences, i too am experiencing long term side effects of interferon/ribavirin treatment,   2 yrs later:  i live in france and dont speak the language too well to even try to discuss it with the medical fraternity:  i now see what i presently experience is the same for others i dont fel so confused like its my imagination and i should feel better  than i do:   muscle pain, joint pain, depression:  it helps to know this is how it is for others: i chose to do treatment after few years of avoiding aware of the "results":  but i wanted to live: now i have cleared the virus, one wants to be able to do more, and wish that the doctors would say this is happening:   but i dont regret the decision i took, it is all a learning experience on the great journey of life and death:
regards karen

[ashercg]

I have searched far and wide for any info on long term, post SVR, symptoms of the peg-interferon Ribavarin cocktail that I took for my genotype 2 HCV in 2001 and this is the only place I have found. I have never felt better than I did before treatment. It is hard to tell whether I returned to pretreatment Quality of Life because you certainly do feel better after stopping the treatment when compared to during treatment but to remember how that compares to pretreatment is next to impossible. I did OK post Tx for several years ( I wasn't horrible preTx). But my fatigue has steadily increased in the past 5 years and now is at debilitating levels. My fingers, hands toes and feet hurt like %^&*(Joints). This started with my fingers and hands during treatment and I have virtually given up on my guitars (played since 75) but could live with the hand problems. About two years ago it started to hit my feet. Starting with the small joints of the toes and rapidly spreading through my feet to my ankles until it is now difficult to stand in the morning. Rheumatologist says nothing’s wrong. Liver Doc says I'm cured. SS and LTD insurance say's I'm Fu%$ed.  Anybody know of a class action attorney or disability attorney that will take up our cause? Individually we are powerless, as a group we may have some clout. I actually feel like I am on the treatment now, although I ended treatment 8 years ago.

[karentaliesin]

just wish to share that the thing that helped me most with the post treatment side effects  of depression and bone/muscle pain  and memory loss has actually been drinking infusion of nettles;  pick stinging nettles  dry them or use fresh,  small handful in flask of boiling water and drink during the day, every day: it contains the b complex vits and others:  i know it seems a bit simple,  but from all the stuff that ive tried,  it has really helped:  
along with a great physiotherapist  who said my muscles jept spasming  rather than arthritis as diagnosed by doc:   i am in much less pain  and can get up and move more freely again:
though i still have days when it feels like i cant function mentally, i am detrmined that i improve as i dont give up:even when i don't feel like it!!!!

[oldhepper]

Thank Goodness I found this site and this subject. I've had HCV, geno 2b since 1965 via a blood transfusion. Was diagnosed in December, 2004 and had biopsy in April, 2005. Since I was doing so well - grade 2, stage 1 - with normal range ALT and AST, my original medical team in Houston decided (and agreed with me) that I not treat but instead focus on quality of life rather than quantity. I continued with my very physical life - landscaping, light construction, etc. - with some down time for rest.

That was 5 years ago, I am pushing 67 years old, and I'm having lots more weak periods, stomach problems and right upper chest aches now. So, I've been considering tx but have been, well, scared of long term after affects. After all, I'm no spring chicken anymore anyway. But I'm tired of not being able to eat everything that I want to eat because my liver is doing less than a competent job in the digestive system.

This forum has allowed me to made the decision to keep on keeping on without tx. I see others my age who do not have hcv in a lot worse shape than I. Plus, I'm a single woman with grown children and relatives living miles and miles away. I've always been highly independent and tx would impact my life when I have no real moral support.

So, to make a long message short. THANKS TO ALL FOR YOUR COMMENTS.

[karentaliesin]

if you can hang out longer   the better  a little birdy told me there are much better treatments in the pipeline,  that are under the testing phase  or whatever it is the pharmaceutical companies have to do, to get it acceptable to the health and governmental agencies, that do not atom bomb ones system in the way interferon does, its always a tuf decision,  whhat path to take:    good luck

[oldhepper]

Thanks so much for your comment.

[Mikkimoe]

I have not been online very much but this post really intrigued me. It has been a year and 1/2 since my treat (was here with Lady Lauri and the rest of the clan - amen to this site! Could never of done it without them - I went in with severe RA and came out with the entire gambet (fibro, neuralgia, chronic fatigue etc) If you want a blow by blow of my treat and autoimune please see my journal. (2B - only 13 wk tx - 104 lbs)

I too no longer work due to the sides - but am on disability. There are a few things that have been helping me - I take the Biogenetic Rituxan infusions every 6 months (Enbrel use to work) I take a gambet of vitamins and brain food (Q-10, amenio acids, enzymes, omegas, lipids etc) They seem to help...but the best thing for the fatigue by far is Consortea (an ADHD drug) I split a 36 mg 4 ways and take every 4 hrs. I also take 1/2 darvacet several times a day and 5mg prednisone. And champage seems to really help with the depression (thank god I am SVR) - but yes I do feel worse then pre-tx physically but not mentally...I am so glad it is gone!

I'd like to know more about the needles (Karen) - where do you get them? how much etc.

I had a great job and really miss it but have my horses and a loving family by my side - attitude really is everything.

I am writing my autobiography and live life from day to day. Celebrating even the small stuff which now seems so big (like walking through a store)

Keep us informed on how she is doing OK,

Mikmoe

[karentaliesin]

i dont know where to get needles these days!!!   but nettles i do,  from the side of the road, they grow more or less anywhere especially where there has been dereliction of buildings,   or in the countryside hedges:
failing that you can buy them often capsule form from a health shop:
pick them before they flower,   when they are a nice light green  rather than old dark green  wear a pair of gloves:  i dry mine so i have a years supply,   just laying them out and covering with newspaper   so air can get at them but not light  a tablespoon of them to one   one and half litre boiling water;  i put in flask and drink throughout the day,   or put a few leaves  fresh or dried into a cuo pour on boiling water leave for 5 mins   flavour if need to   and drink:  hope this is what you meant!!!  and me you were addressing:   but if its needles you want id say try your local pharmacy  ;)
karen

[Melvil]

Dear Mikmoe,

Thank you for your mail. There are so many common points between all your testimonies and what happened to my wife. She, like you, no longer work, as today every common task is like climbing the Everest and needs so many energy from her part. She has written a book, which was edited 2 years ago in France, with pictures and short poetic texts, about her treatment period, to explain her feeling during this long tunnel.
The drugs that you take seems to give you some improvement, but it must be so hard considering side effects (like stomac pain) to take such amount everyday. She is obliged to take antibiotics everyday due to chronic kidney lithiasis and antalgics for headache or kidney stones. Fibromyalgia is not the dominant symptom, but her arterial pressure dropped to 7-8 with txt and never came back, fainting is recurent, exhaustion is daily present, brain fog, and sometimes she experiences breathing apnea and giddiness. But she is extraordinary and has a steel mind, even if we take life day by day.
We hope you a nice week and your body to be less and less like your ennemy,

Best regards,

Melvil

[Mikkimoe]

Thanks for your well wishes - one other thing that has helped me is vitamin D suppliments - the treatment really takes it out of you and I had no idea until I had bloodwork done-I have to take 50,000mgs every week now. It really helps with the legs pain and possibly with the fatigue and brain fog - have her check into it.

With every challenge life has thrown at us - some of us take them as opportunities...sounds like she is gifted in that way. Very special the love you have - cherish it.

[Melvil]

Dear Mikkimoe,
Thank you for your advice for vitamin D. We will check. I know that this vitamin can be linked to cognitive functions impairement if deficit. This is a track to follow.  
Kind regards from France

[desrt]

I'm happy to see you are looking into the CoQ10. Though you won't see any spectacular changes in her symptoms, it is something the cells need for their mitochondrial health and as we grow older we are less able to absorb it from natural food sources.
Another supplement I've recently come across is called CerefolinNAC. It is a prescription form of  B vitamin and the glutathione precursor n-acetylcysteine. With this I have noticed improvement in my post-tx symptoms.
Good Luck.

[karentaliesin]

   NB: the B vitamin and the glutathione precursor n-acetylcysteine. that desrt mentioned are both found in nettles,  just though i would mention that,  cos stinging nettles are free of cost and often easier to digest, if you have to pay for your supplements:  lol karen

[ladybug52]

I'm sure that reading about the post tx side effects are scary, but being a genotype 2 myself, stage 1 grade 2, I feel our stories are very similar......however I chose to treat.    

I chose not to continue after 16 weeks, but I am SVR. Tx made me feel like my brain was frozen and physically it was very difficult. But I was able to work and I'm so thankful that I'm through with tx and hep c. It's such a relief to not worry about my liver, or contaminating some one else by accident.

Not everyone has long-term side effects post treatment, and I feel horrible for those that are going through such a rough time.

I wonder if they had a genetic predisposition for an auto-immune disease and if the hep c or treatment exacerbated the condition.

I agree, it would be nice to have some answers.
Bug

[Lady Lauri]

I apologize for slipping in and out if this discussion, sure you all understand why.

Fibromyalgia is what I have 'self diagnosed' myself with since lack of insurance has hindered much further medical exams, testing. I know whatever I have it is surely stress triggered as the past mth, my muscle pain, issues have been in high, intense mode! I have the Q10 given to me by my acupuncturist and going to start it today!

I have always believed (Bug) that the length of exposure to these drugs is so important in damage to us/some. You did 16 wks ( where I often wish I would have stopped, BTW)
so that shorter exposure may have been why you haven't suffered so much post.
(thats almost a 'duh' , huh? :)  But it still never makes sense, adds up as I did 24 wks, yet some with 48 wks are fine, etc.
I am betting many of us had ...... "a genetic predisposition for an auto-immune disease and if the hep c or treatment exacerbated the condition" , YET....supposedly my Dr., others, do testing beforehand for autoimmune diseases and through out my tx and reductions, he kept saying my blood work wasn't suggesting any?!

Anyone else up there seeing that stress intensifies their symptoms?

LL

[dennisthemenace]

hi melvil and all goodwilling long term side effects concerned,

I feel relieved  not to be the only one after I found this thread. I experience  kidney pain, exhaustion, teeth falling .thyroid upset. A result from,11 months high dose INF riba tx, (gen C1) ; even though tx over 2 years ago .now  virus free.

apparently low blood pressure n exhaustion corelated. Thus if one could rise blood pressure exhaustion may disappear. I know that, on rare occasions , my blood pressure goes up n I feel much better.

No need talking doctors n specialists, without any measurable results from anlysis, (other than blood pressure) they think kidney pains all in my head. God be with us, whatever our faith, cause who else will be? pharma corps weigh on the health system and brainwash all to deny reallity of long term side effects . remember your liver will not heal scars from fibrosis n cirrosis. it will only stop getting worse if you cleared the virus.
keep on searching perhaps  the link between hormonal mess up and liver regeneration at the root of all this.

much love to you all
dennis the menace, france

[ladybug52]

So glad when you are able to contribute, I know you are suffering mentally and physically now too. BTW, I went through your photo album a few days ago (Sun) and really enjoyed it!:) Glad to hear from you and feel fortunate, so sorry for the never-ending year of pain and suffering you're going through. It just doesn't stop for your family, does it?

When you say your Dr tested you for auto-immune diseases before and during treatment, what kind of tests did he perform? I wasn't lucky enough to have a Dr that involved with my treatment.

I have taken Adderall (adderrall) for my ADHD since 05, and I'm sure that it helps with my ability to stay awake and focused, after all it's a stimulant, but I wonder sometimes if it "hides" fatigue. I forgot to take it last Saturday and ended up taking a 41/2 hour nap in the middle of the day.

[karentaliesin]

hi guys,
hope your all having a good day, as much as possible,
ive been re reading through the posts and some older ones on other boards/topics  and because i feel so difficult to address my own doctor  to get useful help, with side effects and not really knowing what i should ask him to look or test for: always feels like a brick wall,  "yes dear   just get on with it"  i had a penny drop, of remembering  that having these post sides,  wether pre disposed or not,  that to start trying to treat ewch symptom seperately, isnt really fixing the problem,   some how the whole system needs overhauling   and i guess for that i need to return to other types of treatment such as homeopathy, to somehow try to rebalance the whole system: rather than lots of medications to treat  depression,   muscle aches, brain fog, headaches lethargy and fatigue;  i am clueless as to the state of my liver, because apart from a fibrotest done in 2004: which was stage one:   i do not know the present state of my health:  aprt from what i experience :   so i guess thats going to be my next line of approach:
(just to actually get myself to the doctors or homeopath, is so difficult,  its like i really dont want to face them   its mad)  
till the next rambling moment of thought,  i send you all good thoughts
karen

[altaroy]

Yes ,Stress for sure cause my fibro to be much worse.I also found weather to be a big factor as well. So great to read all your posts.I wish everyone well  .

[summerbuddy]

I have looked into all the lastest treatments and they all have horrible side-effects.It's bad enough that your liver has a virus that is trying to destroy it and you,the treatments destroy any quality of life you have left.I have been sick with this virus for 11 years.9 of those years were good,the last 2 but especially the last 6 mos.,have been hard.But,I am able to walk my dog,go places.I'm not bedridden yet.I have chosen not to get the interferon or the other chemicals.I am fighting this by taking care of myself,keeping a positive attitude,taking known herbs used to cleanse and repair the liver.Except for the migraines once in a while,I'm doing ok.My boyfriend died 7 years ago from liver failure due to HEPATITES C and Alcohol.This virus is the cruelest killer.It not only robs you of the joy of life,it causes dementia,pain,swelling and multipul organ damage and failure.I would not wish this on my worst enemy.It is an awful way to pass.I sympathize with you on your wifes condition.It hurts to see those we love hurt.Just keep doing what your doing,standing by her and loving her.She is soo fortunate to have you.I will send good thoughts your way.

[FlGuy]

"the treatments destroy any quality of life you have left"

Not necessarily a true statment.  Many people, maybe the majority, are able to work and play while on treatment and lead life close to normally.  On the other hand, and as you've witnessed, the spiral of liver disease is an awful way to pass. People are free to choose the options available.

[dwert56]

We have no idea how many people are damaged by these medications.  There is no follow-up from the drug companies or the doctors.  They are only interested in cure rates, that is who has cleared the virus.  Very few doctors even want to hear about ongoing side effects and what to do about them.
I took treatment in 2001, cleared the virus, and am very disabled still from the Peg-Intron.  The doctor's only response is take anti-depressants, anti-anxiety, sleeping pills, etc.  Take more pills and don't bother me.  Before treatment I was healthy and very active.  Now I struggle through every day

[Melvil]

I hope everybody is doing as well as possible,
It's true that first response of doctors is to add drugs to relieve or attenuate symptoms (sleeping pills, anti-depressants, antalgics, anti acids, and so on) which, in long term add other side effects to the previous ones. It is like a vicious circle. But it is like a consent of their powerlessness to face this situation. All pharmacologist tell you that, when taking more than 3 or 4 drugs together, can have unexpected effets (due to the drugs interactions or metabolites of these drugs interactions). I know that actually some research teams are working to decrease the drugs dosage by using synergies in a cocktail of them at much lower levels (really low levels) in order to avoid all side effects, but this is very new and will not be applied before years. What can we do meanwhile when the person you love suffers day to day from pain, vertigo and insomnia ? Taking pills, always, with the risk of increasing dosage (an side effects) and even the risk of addiction.
Concerning stress, yes, we observed an interaction with it. But all kind of stress : heat or cold stress, noise, and so on. We observed that, in a stressfull environment like those I described just before, the risk of fainting was much increased, like if the body had a lower capacity to fight against "stress".
I dream of the day where authorities and pharma companies will recognize that what happened to all of you is due to their responsabilities (and not in your mind) and will do their best to find solution(s) for treatment and so big administrative hurdles. It is a question of respect regarding to what happened to you. This day is not for tomorrow, but if Roche and others would like to take only 1% of the benefits they are doing actually with influenza A to focus on this iatrogenic disease, the light at the end of the tunnel would be closer. My wife has a hard time actually and we will wait some time before making new investigations. But she will never give up.
I wish all of you a very good week end and send you our warmest thoughts

[Rockerforlife]

Have many have had vaccines and flu shots in the past and are eating commerical foods(non-organic)..and who drink tap water and gooble back pain killers and anti depressants and sleeping pills?....anyone?

[dwert56]

I reluctantly got my normal flu shot yesterday.  As you all know, the swine flu vacination is not available yet.  I don't know if I'll get that because I am afraid that they haven't done enough studies yet.

I have always eaten a very healthy diet before treatment, during, and after, and drink well water.  I do use pain killers, sleeping pills, but no anti-depressants.  I'm taking a bunch of supplements including Q10.  It's always hard to say if supplements are really doing any good.  I don't feel much different.

I just try to stay positive, eat well, exercise, think good thoughts, etc. and hope that eventually this "whatever" will subside.

[Rockerforlife]

Swine flu vaccines are a money grab....even doctors refuse to get flu shots

[debnevada]

Me too, diagnosed jan 07 with acute hep c, geno 4, treated 43 weeks, taken off for kidney stones but was negative for viral load at week two of treatment and remain SVR for over one and half years post tx.

officially diagnosed with fibro, recurrent stomach issues similar to autoimunne crohns, and was recently referred to mayo.  serious fatigue (sleep 12 hours per day), documented multiple medical problems post tx.

but i'm still glad i treated.

it's tough.  

Deb

[altaroy]

  Hi all, Hope you are all doing well today. I too will not get swine flu or even regular flu shots. I feel I have had enough experimental drugs the past two years with the Albuferon and its side effects.

[dwert56]

I have now been diagnosed with Lyme's Disease.  I had 2 tick bites over 25 years ago.  It has been suggested that the Peg-Intron treatment laid down my immune system so that the Lyme's bacteria could really get going.  Many of the symptoms are the same as post treatment problems.
Has anyone else had this issue?

[seabean]

It's interesting about the Lyme Disease diagnosis.  I questioned a doctor about getting bit years ago and getting the disease later (I also had several tick bites approx. 25 years ago) and was told it could not happen................I do not agree.  Did it show up in your blood work?  Did the dr. prescribe anything for it?  

Judi

[karentaliesin]

very interesting i have had hundreds of ticks on me over the years,  keep us posted
love karen

[roxanne1197]

I just want to get my experience out to as many people as I can.  I completed the  full medication successfully in 2002 at 35 years old.  I have tested negative every year, however I also had full blown menopause by 45 years old.  My mom and sister were in their late 50's when they started menopause so my doctor said my early menopause isn't hereditary.  I wish I had harvested and stored some of my eggs before treatment in case I wanted to have a baby.  Please consider this before starting treatment.

[posthepc]

This is a very interesting post...thanks for starting it melvil! I have learned a lot here. I am geno type 1a and 7 months post tx. i was SVR at 6 month post check. I am thrilled about that but am sad about the side effects that are still linguring. My thyroid was killed with the radio active iodine 5 months ago so my hormones and whole body is toally out of wack. I do feel extremely fatigued, often brain dead and have this reaccuring bladder/kidney infection thingy going on. i thought I was alone with these post tx side effects until finding this site and this post. I am sorry for everyonelses troubles but feel not so alone with all mine now. I was blaming all my sides on the screwed up thyroid but see now that many of my health issues are most likely related to the 11 months of interferon/ribaviran tx. I have read this long post over and over so that I may find a few answers...thank you everyone who wrote one. I wish you all better health and much joy in the near fututre. p.s. I am from the rockies too altaroy! Hope you are enjoying B.C. Canada is a very senic place to live...eh...LOL

[AKHepper]

I treated unsuccessfully in 2003 and the fatigue has steadily gotten worse. Not sure if I'm going to be able to work at all anymore. I started a new job last week, worked two twelve hour shifts and am still trying to recuperate four days later. I get totally exhausted, then I get a migraine.
I was supposed to go back tonight but I don't feel like I'm up to it. I know what will happen and I think all these fatigue episodes are making me worse.
Don't know if it's the hep c I've had for almost thirty years, the interferon, or a combination of the two.
I don't know what I'm going to do for money. I started the application process for disability today, but they say seventy percent of cases get denied. Got no insurance, either, so can't afford to retreat at this time.
bleh

[dwert56]

Welcome to the club you really didn't want to join.  I'm sorry you are having the hepc/interferon issues.  I can tell you that you are not alone, but that probably is no help either.
It's smart to start working on the diability income as soon as you can.  I know it's hard to get, but you got to have food and shelter.  This treatment quickly reduces you to the basics of life in a way that probably never have had to deal with yet.
Hunker down, and when you've got the basics secured, then you start, like the rest of us, to see if anything helps, what causes fatigue, what can I do, etc.
It's a tough road, but it's still life which is a very  good thing.  There's still incredible amounts of beauty and loving available.  We're all there together, you are not alone, and things will get better.  Believe.

[AKHepper]

That's a nice post, thank you. :)

[Lady Lauri]

It is sad..............that we all continually guess, and 2nd guess, and try to self diagnose ourselves in this, with rarely a real answer. We go from fibromyalgia to Lyme disease to thyroid , etc (in trying to figure WHY we often feel so bad). I told a friend, I'm pretty much back to where I was all the yrs. I kept getting told "Oh your fine" at Dr.s offices until my acup. finally caught the Hep C! Still trying to figure why I have a good day, then a bad. I can work 12 hrs with little pain, and the next awful. I'm down to thinking it is simply (yet not!) CFS for me. (Chronic Fatigue Syndrome) and do feel it was brought on by tx meds.
In my appointments self diagnosing myself  : ) ..............I don't have certain things of fibromyalgia, I still have great muscle tone for having a lot of muscle pain and so on. The only criteria I match up to is that. So I'm taking my meds and seeing myself next week. LOL. (haha, from one that is in the cracks of no insurance ;)
I just hate seeing so many of us guess, daily. For me, and many, not knowing whats wrong is half the battle. TELL ME what 'it' is and I'll know how to deal with it, ya know? Like the Hep C.

That said.....I would still rather deal with this then Hep C, cirrhosis. My cup is full, I am thankful everyday that I beat Hep C. My heart goes out to those that have to deal with post issues and didn't SVR.

Postthepc ....(welcome:)......radio active iodine?? And I am getting labs, thyroid check soon, just to see. It didn't mess mine up during tx, but it could be now and know it does throw your body out of whack.

AKhepper....welcome :)  Very sorry you didn't reach SVR :(
I'm in the process of figuring something else to do for work, as everything I do is very physical and I pay for it each day. With your issues, there is many things you can do at home, on the computer. Disability is hard to get, you'd be best getting a lawyer to handle it I think. (anyones else know better on this subject?)
Good luck to you.

dewert56......lovely post :)  So true.

best to all, LP

[athena318]

My fiance went thru treatment Inteferon and Ribo for year, the first couple months were ok, just felt like he was rebounding then all hell broke loose, he went crazy for couple of weeks, so much so I took him to ER and I forget what it was but his level was so high that he was on borderline of death, but doesnt have the HEP c anymore.  Every since then, the pain in the joints, not sleeping, heart problems, brain fog, being forty five but feeling eighty five.  So many doctors, none will even entertain the idea that it was the treatment.  I did research and did find that the drug company than manafactures the Interferon Ribo therapy does some sort of payment to doctors who prescribe their therapy, it was or is around several thousand for each patient they put on this therapy.  Its legal because they call it something that is not illegal, so you cant very well go back to the doctors who prescribe it because they are bought and paid for.  And no other doctors know about this because the only doctors who prob do will not say anything because that would open them all up to a big malpractice suit.  
All we want to know is what is the best thing for him to do or take, to get back a former part of himself, how can he sleep at night, how can he come out of this brain fog he is in, he used to have above IQ level, but now cant remember anything.  He barely can work, and was almost let go after twenty years because his boss didnt understand why he couldnt work the way he used to, he looks the same.  Thank God his boss gave him a reprive and suggested pay cut and working in less physical dept.  Which is ok, because he needs to keep the insurance.  I just want someone out there to find a cure for this treatment that was given to him.  I want my best friend back.
Thanks for reading this, any suggestions will be appreciated.  I read alot but didnt read it all because I got really sad.  What can he do to get better.

[altaroy]

  Good post Athena, My wife feels much the same way ,she also wants her best friend back. I have to agree with you on the doctors as well, I did a clinical trial so I imagine the doc was paid even more for the use of his guinea pigs...All I can say is I moved to a warmer climate ,eat health and do tai-chi. I have learned to live in pain and continue to fight with my employer for disabiltiy,(16 months without pay so far). I wsih you all the best.  :O)

Alta Roy in BC