Hepatitis C: Post Treatment Issues Community
long term after effects post interferon
About This Community:

This forum is for those who have taken HCV treatment, and have been off treatment for at least 6 months, to discuss any lingering or new health issues that may have been caused by the Hepatitis C virus itself or may be related to treatment for Hepatitis C. Some examples are autoimmune conditions, previous medical conditions exacerbated by the virus or the treatment, liver damage, and inflammation of the joints.

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253566_tn?1219683299
Thanks for that site. There is one that might take my insurance and see me/within my area.

What I meant about "by the books" is that this type of doc that is not interested in looking at a patient as a human but only as a text book. #1 We do these test first and if they come back OK = end of story!

Again, the most recent Endo was so freakin lazy she wouldn't even run specific test I asked her to run that my GP had not run. I don't think my GP ran the TSH and a few other specific test but this Endo refused to run them. I had a positive results biopsy 98.5% (or something like that - positive) but this crazy Endo only talked about the negative! She didn't know that I had the report in front of me while I was on the phone!

My GP was outraged and said I would never have to deal with her again! He ran the test I asked for but I didn't know about the 12 hour fast early am blood draw. I am taking Vit D but my D results are OK.

I will share my CRAZY Iron results of this past summer.

I don't have the numbers in front of me but basically the story goes like this:

Early summer extreme anemia at 6! I believe my GP said the minimum should be 40 and 100 is best ... He said 6 is the same as Zero!

So I did a IV of Iron *I think it was a course of 3X over a week or 10 days. and then we tested my iron numbers after a month. My Iron came back around 26 or so after the IV.

Then my doc suggest that I should do a course of oral Iron. I wasn't really happy about this as in the past supplements had not done much for me but actually clogged up my system - I eat very healthy and in the past when I quit all the supplements I was taking my body felt a LOT better. ANYWAYS I was on the Iron orals and wasn't feeling so great after two months. Talked to my GP and he said it was OK to stop them... I asked him where he thought I would be with the blood work with the oral. I was SHOCKED by what he said! He said that oral Iron won't really increase anybodies iron much! He said it might remain the same but absorbing oral iron was very difficult for the body & that is why they do the IVs.

I was kind of angry with him actually - putting me thru this! Sooooooo, we do the blood work after the two months of oral iron! And the crazy thing was that my Iron levels went to just over 100.

It wasn't due to the oral Iron but due to the fact that HepC treatment had put my system into such a chaos! This is how it has been for a decade. My numbers go up and down thru-out the year! Finally my GP believes me!
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Avatar_f_tn
I am surprised that your GP did not determine whether your anemia was an iron deficiency anemia or an anemia of chronic disease which is not due to iron deficiency and will not be helped by iron supplements, oral or IV. (http://www.irondisorders.org/anemia-of-chronic-disease) During hcv tx hemoglobin can go dangerously low, but you are long past tx, right?

It sounds like you need some better doctors, or at least one with the attitude of "we will get to the bottom of this" and who won't throw you to the curb and give up!

I hope you find a good endo doc near you and can get everything checked out. There is a lot of good information at the website I gave you especially about testing. Good luck and keep me posted!
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253566_tn?1219683299
Thanks for the advice... Yes, long past tx, and "cured" but with a whole lot of PIS!

I do like my GP but he is totally overwhelmed with his practice! He is young and excited by what I bring in but I have to do the research!!! and I really am not that knowledgable... where I live is a tiny area and I think the docs here are somewhat nervous about having an informed patient.

I can get to the BIG city where there is one Endo on your list so I will do some research on that doc along with my GP about her.

I do believe that I have a chronic condition that is inflammatory in base but just can not get any test to prove it!

This is what I was told at the University of Pittsburgh Liver Center - that my system was in such chaos numbers would change and it is true.

I will see what I can discover about this Endo in PGH and hold out hope that she is Very Good!

Thanks again. f

btw, in the meantime I am on my second month and up to 2.5ml of LDN which reduces inflammation thru-out the body & crosses the brain barrier = a study showed that those who suffer from chronic-fatigue had inflammation in the brain.

This past month has been a huge stressful time and maybe the LDN has helped a bit but then I am also taking B12 & large doses of the other Bs as well as D. That is all the supplements I am taking...
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Avatar_f_tn
I, too, have all "normal" tests for everything until this 12 hour fast test. So I know the frustration of not knowing what is causing what!

I just got the call from the doctor's nurse this evening...they are calling in a Rx for Snythroid and I need to up my Vitamin D, it's low.  More follow-up to come, but I am to start treating the hypothyroidism right away. Lord only knows how that will go; hopefully, I will see some improvement....and hopefully not more problems! You never know with us PIS people!

It would be great if your GP could talk to the endo before you make the long haul. Maybe give some background and ask if she will do the specific tests as outlined on the thyroidchange.org site, or see if your GP would do the 12 hr, a.m. draw? (I could give you the entire list of what was ordered.) Maybe your GP could also get a feeling for the endo's "enthusiasm" to be a true medical detective? Let me know how it goes.

Yes! My next step after the endo was a new gastro guy who is listed on another site as being open to prescribing LDN to folks like us. I have followed those posts on here and did start to research it. I guess not every doctor is open to prescribing it. I did get the referral to him and I will see how that goes; however, I think I should give this synthroid a chance before I move forward on that.

Besides upping my Vit D I am also going to start taking B12 again. I think you are very wise to stick with those two...can't go wrong. I just cut back so I could see my baseline without supplementing, but now I will get back to them.

Again, keep in touch. See if your GP will help you "vet" the new endo, or order the preliminary blood labs. It's a long way and more expense, and you don't want to waste any more of your resources!

Take care,
Faith
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253566_tn?1219683299
I think we are on the same page.

Good luck with the Snythroid! Let us know how that goes. Doesn't that sometimes have to be adjusted?

Us PISsers are in the great catch 22 with so distrustful of docs but finding them so necessary to help us!

On the LDN path - I couldn't find a doc to write me up so went the Thai full dose which I actually highly recommend - of course with the blessing of your docs & my GP is really excited by it all (he can't write it up in PA)! Doing the full dose thing means that you are able to liquify it then control the dose yourself without the fillers of LDN specialty pharmacies and those costs! There is a lot of money being made on LDN and a lot of bull on the forums which one can get away with since there is little research BUT a pharma just bought the rights to LDN so things will be changing in the future.

I did have a big problem with PM dosing and vivid dreams! I had to switch to AM dosing... and after nearly two months the vivid dreams have slowly subsided. BUT if you read most of the Pros on the forums they demand PM dosing which is total bull... it is based on lab mice tests which has nothing to do with human testing. So if your gestro demands that you stick with PM dosing run!

Well, I went off on an LDN tangent and it is crazy late here so I better end it there for now... more later.

Nite all, f
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Avatar_f_tn
I didn't see this until after I wrote back to your pm. Interesting to hear about your experience with LDN. We will keep in touch?
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Avatar_f_tn
I was cured of my HepC2b 4 yrs ago. I still suffer from fatigue, joint pain and personality changes. I am not depressed but have panic/anxiety disorder. My sex life is gone! I have no interest what so ever!! You are not the only one who wonders about this treatment. I also have memory and vision problems.
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I sometimes wish I had waited for the newer treatments. I wasn't sick when I requested a full blood panel and they found hep c plus my liver enzymes were normal. I felt great. Now I feel like crap.  The joint pain is bad and I started a new job working 6 days a week. Sure I am glad my Hep C is gone but I wasn't sick to begin with!!
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My feet are killing me and have been since finishing treatment!!! I have to wear Skecher shape ups even to church. Mood swings sometimes I think I am going nuts!!
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317787_tn?1428318779
I am really glad that you have found some answers...help.
I know that when the thyroid is checked the most important thing to check is the Free T3 and Free T4.  While TSH is helpful it is not the only test that should be done.
I have found that what one doctor says is normal is not normal for me.
I started getting copies of all of my blood work so that I could figure out where on the range I felt the best.  
I hope you get relief.
I have read that many many people have problems with their thyroid after Interferon.  Sometimes it happens during tx, right after or even months later.
Thank you for sharing your information.
D
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253566_tn?1219683299
Hey Dee and All,

Yep, I always get a copy of my bloodwork as well as MRI or whatever I can get!

I am lucky that the main hospital most of my work is done at never charges - as sometimes I like to have the records before I see the doc. Of course I can get them from the docs office...

The time I went before the second SS Disability Judge, to contest the first Judge and his crazy decision, my records were so great in number that they could not be carried in but had to be wheeled in on a cart! I was kind of shocked! LOL! And that was nearly a decade ago.

I just got an iPad Air2 and it is really crazy light! So I am going to start bringing it to my appts - I still prefer paper! but I am going to start making a data base of all my numbers over the years.
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Avatar_f_tn
I too have been checked a couple of times while trying to get back to my ole self since tx. I found this endocrinologist at thyroidchange.org. They have a national database of docs who supposedly do all the right tests.

Regarding reference ranges: They were different the last time I was checked than from this time. A lot of conversation and controversy going on amongst the endo docs lately.

Sad to think that so many of these symptoms are getting written off as fibromyalgia and other things that have no real treatment other than treating the symptoms (e.g., opiates, steroids, etc.).

Mine is also not autoimmune Hashimotos (he tested that as well), so who knows what caused it? One can be on that path for years and it takes a while to become symptomatic sending one to a doctor, and then most of them miss it.

I don't know yet if this is going to make a difference for me, the effects of tx take several weeks and then there might need to be adjustments. The endo said all of my symptoms were those associated with hypothyroidism which can be many or a few, and varied for each individual.

We shall see....
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Avatar_f_tn
Hi so i didn't know where to write or who to ask but i found this thread, i was just diagnosed with hep C , I'm a a very very very early stage. and i was wondering if anyone u or anyone here knows who has tried alternative medicine such as black seed oil , and raw honey , and similar organic natural things.

I'm really scared of the treatment and i wouldn't want to have severe depression, I've already suffered from severe depression and just started maintaing a healthy state of mind. i feel like if i take interferon my life will end.

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317787_tn?1428318779
Hi I just saw your post, sorry. There are new treatments that don't include interferon. I don't have info right now but you should check for new drugs for HCV approved in Egypt. I will check too and come back. My computer is down. I am on my cell, it might take a while.  dee
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317787_tn?1428318779
What type of HCV do you have?  I see Gilead is giving Sovaldi to Egypt with a 90% discount. It would be about $900 for 12 weeks. It depends on your genotype.
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Avatar_m_tn
Big Pharma rapes the U.S., and we allow it.  Once citizens, then consumers, now prey.
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Avatar_m_tn
Try bupropion / wellbutrin.  Some research suggests good effectiveness for post-interferon syndrome.
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317787_tn?1428318779
I hear you interferon was awful.  I have had to reconcile myself with the fact that I was able to be cured.  Then I had to deal with the after effects.
I was diagnosed with the beginning of cirrhosis so had to try something.
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Avatar_m_tn
Thank you very much for interesting link about 35-year study!

>"If one stays at a healthy weight, one has only a 4% chance of cirrhosis after 35 years. "

If I correctly understand this article, percent of chances of cirrhosis
will be higher for non-SVR and treatment naive subgroups. We can see 3.8% of
cirrhosis for 263 patients, incuding patients with SVR, and spontaneausly recovered. Majority of people with cirrhosis were in non-SVR subgroup and treatment naive subgroup - thus, for such subgroups percent of cirrhosis will be higher (maybe 8%, for example)...
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take  milkthistle
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take milk thistle
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take milk thistle
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Avatar_f_tn
put Adolph's meet tenderizer on the area. same as a jelly fish sting.
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Avatar_f_tn
Once a week I sleep for about 16+ hours. It helps my brain, improves my energy. I  do the flu shot every years, but still get colds that take forever to go away.
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Avatar_m_tn
Dear Can't TakeAnymore
I wish I could offer you more than sympathies. Almost to the letter, my post-Pegasus experience duplicates yours.  I had a liver transplant in 2004 owing to HCV. Within three weeks the virus has returned. This was expected. I lived with it without too much trouble. My gastroenterologist called my wife I to meet with him and the hospital's pharmacist. They explain that my HCV was replicating far to quickly and they gave us a $0.25 explanation with the pharmacist stating, "If you don't take the Pegasus treatment I would be committing suicide"! (I nearly hit the floor at such a statement) Nevertheless I enrolled and complete the full 52 weeks of treatment. Each Friday night I would inject myself with interferon.  I literally could not get our of bed until the following Tuesday afternoon. Now, this very deep fatigue, lack of vitality & malaise has resulted in the need to take 100 mg of Ritalin daily just for a few fleeting hours during which I can attend to my life's "stuff." I'll close for now but not before asking if anyone else in this community suffered with mean, black, evil fatigue.
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747988_tn?1396540478
oh yes-the last 8 years since successfully treating I have had no quality of life due to fatigue pain and cognitive issues.Ritalin is very difficult to get a prescription for in the uk so /I don't have even a few hours to get things done-feels like I'm still waiting for life to start again post treatment.
You'll find lot of folk here suffer with chronic fatigue from hcv or treatment.
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747988_tn?1396540478
re interferon mediated fatigue
http://onlinelibrary.wiley.com/doi/10.1002/1097-0142(20010915)92:6%2B%3C1664::AID-CNCR1494%3E3.0.CO;2-9/full
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Avatar_f_tn
I hear ya. I've been trying to get my life back after tx for three years. I just posted this last night so I hope I don't get into trouble for copying and pasting it here. (I see the link I posted has problems so just google "thyroid and interferon")

Finally, more and more doctors are being open about the thyroid damage from interferon. After three years of debilitating pain and other PIS issues I found a doctor who concurred that my "mysterious illness and symptoms" are most likely the damage to my thyroid from interferon. I am being treated and the improvement is dramatic, especially the muscle and bone pain. My vitamin D (which can cause all over body pain) and B12 (which can cause peripheral neuropathy) were low as well. The lack of the thyroid hormone, the Vitamin D and B12 is a perfect storm of PIS.

My thyroid was tested by more than one doctor but the "normal" lab work does not tell the whole story; find a doctor who knows how to dx thyroid disease. Some doctors, even some endocrinologists, cling to the "Immaculate TSH Belief" and won't look at the whole picture. If you are still suffering and you've been told your labs are "normal" read the following and start searching, ​"The TSH Reference Range Wars: What's "Normal?", Who is Wrong, Who is Right..."
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

Many cases of Fibromyalgia, Chronic Fatigue Syndrom (syndrome) and Chronic Pain Syndrome are now being determined to be thyroid disorders as well with more doctors moving away from total acceptance of the reference ranges. The symptoms are very much the same in all of these conditions. Starting the hormone replacement therapy is changing people's lives.

I found a doctor near me at thyroidchange.org. The doctors listed are known to do all the thorough testing and to give credence to symptoms.

The symptoms of thyroid disease are the same symptoms we see most often from people on the PIS threads and include: muscle and bone pain, aches in joints, hands and feet; fatigued, exhausted, run down, sluggish, lethargic, depressed, restless, moods change easily, feelings of worthlessness, difficulty concentrating, feelings of sadness, losing interest in normal daily activities, more forgetful, can't seem to remember things (brain fog); insomnia, gaining weight inappropriately, unable to lose weight with diet/exercise, constipation, hypothermia/low body temperature (feel cold when others feel hot, need extra sweaters, etc.), hair is coarse, dry, breaking, brittle, falling out; skin is coarse, dry, scaly, and thick; hoarse or gravely voic​e, puffiness and swelling around the eyes and face; carpal-tunnel syndrome, irregular menstrual cycles, trouble conceiving a baby, no sex drive, more frequent infections that last longer, snoring more, sleep apnea, shortness of breath and tightness in the chest, need to yawn to get oxygen, eyes feel gritty and dry, eyes feel sensitive to light, eyes get jumpy/tics causing headaches, vision issues, strange feelings in neck or throat, tinnitus (ringing in ears), recurrent sinus infections, vertigo, light headed, severe menstrual cramps...and more.

The thyroid hormone controls every cell in your body; and therefore, everything in your body.
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Avatar_f_tn
Me too, it's been many years since I had interferon/ribavirin "treatment".
I feel worse than ever
Frankly, I felt better when I was positive.
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Avatar_f_tn
Your description of being " cured" sounds very famiiar
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Avatar_f_tn
Me too.
Feel lousy, yet was "cured " wth Iterferon many years ago
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Avatar_m_tn
Has anyone on here with post Interferon related symptoms tried a supplement called Longvida Curcumin at a dosage of at least 6 grams daily (divided dosages)? This is the only bioavailable form of Curcumin I am aware of that achieves favorable pharmacokinetics. I am not trying to sell this product, I am just curious as it may in theory stop some changes that may take place upon long-term exposure to the drug I am student researcher, very interested in mechanisms that may underpin persistence of IFN therapy associated symptoms.
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Avatar_m_tn
im having the same problem after 8 years family tells me im not the same person would love to find happiness again
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317787_tn?1428318779
Hi thank you for the article, it was really good.  I wish they would come up with something to help.
Dee
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Avatar_m_tn
I did the treatment about 9 years ago. I went through hell and I have been trying to get back on an even keel since. I had a retinal eye tear and my sight has steadily got worse. I had major mental health issues, psychosis , depression etc and now have been diagnosed as been bipolar. I also being suffering gastro problems. These are all known side effects.

even though supposedly clear of Hep C I wish I had never done the treatment .
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Avatar_f_tn
So sorry to hear about your experience. The human body is so complicated and ramping up one's immune system for months on end can do so much damage to so many things, and we are not all the same. The bottom line is that there must be a reason for the horrendous and debilitating symptoms, and good investigative doctors are rare, not to mention that searching for them is so expensive. Of course mental and emotional issues will follow not being well for years with no remedies, and in fact some diseases in and of themselves cause the mental issues. I hope you can keep searching and find some better state of health.
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Avatar_m_tn
I don't know if you will read this, since your post is half a year old. But maybe it will be also of help to somebody else...

Did you know that after Interferon therapy there are quite a number of people that develop hypothyroidism? It was the case for me and I recognise many of the problems that you describe... After Interferon therapy it is often subclinical hypothyroidism which means increased TSH (moderate to severe) value, while the hormones FT3 and FT4 are still within the normal reference range.

You should check for TSH, FT3 and FT4.

In my case it took doctors more than 12 years to diagnose the hypothyroidism. Now with all the knowledge that I have about blood values related to hypothyroidism I can see that one could have diagnosed the hypothyroidism much earlier and avoid a lot f struggle in my life.

Don't give up, and don't forget, that interferone therapy, as well as drugs and certain medications are big stress to our bodies and brains. So check on your mineral and vitamin statuses, such as iron, selenium, Vitamin D, Magensium, Vitamin A, Vitamin B12 and so on... even if you are not hypothyroid, with all the things that happened to you and your body in the last years you could have lacks in several nutritients and that will make psychological recovery so much more difficult, since e.g. without the appropriate amount of iron your body will not be able to produce dopamine, and thus lack of iron will inevitably result in apathy and depression... If you took drugs, then you know the effect dopamin has on the mind.

Take care and don't give up!!!
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Avatar_f_tn
I finished my treatment 29 of May 2014, one year ago. I have pain everywhere in my body, shoulder, hip,neck,TSH jumping up and down,I am so tired of all this. Just wondering if I ever feel better...I so much suffer, I hope one day all this post treatment side effects leave my body and I will be able to enjoy my life.
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Avatar_m_tn
Hep C treatment in 2008 made me permanently sick, drastically and permanently impaired my liver function, caused me to spend my life savings while utterly fatigued and unable to get out of bed for three years, addled my brain, and almost certainly shortened my life.

At least it cured me of western medicine.
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Avatar_m_tn
Scottie, I feel for you.I am 14 months post and not functioning
well either but still hoping that it could change tomorrow.
Trying the natural methods...raw foods,juice and supplements.
Cannot do harm. Keep on keeping on and best wishes to you.
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317787_tn?1428318779
Hi all, just stopping by for a minute and I saw a post that Socrates18016 wrote in May 2010.  I had never read it before.  It really hit home for me.
What he wrote struck me so much I wanted to point it out to others who are still having problems post interferon
Good luck to all
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7469840_tn?1409849436
Ribavirin especially with Interferon, can contribute to osteoporosis I am just finding out, in both women and men, so if your bones feel like they are aching, asked for a bone density scan. Just sayin ...
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1798872_tn?1346168185
2000 Interferon w/Ribavirin and in 2010 pegyast w/Ribavirin....I'll make this short....pretreatment i was 37 years old bench pressed over 300 pounds. Was kind of a health nut. Worked as a mechanic 10-12 hours a day..felt great.Opened my own shop and was doing great.2006 it hit me and stopped me dead in my tracks one morning,went to dr. pain meds back to work.Long story short had to quit working any and since have been DX with...SLE Lupus,RA,Sjogrens,Fibro.,Throid problems,many back and cervical problems and the number one......Chronic Pancreatitis which is at least 10 times worse then treatment and hep. C combined...I wished i would have smart enough back then to do my own research on treatment.....God help us all.....and i just hope any who have treated the best of luck.....
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1798872_tn?1346168185
One more thing i keep reading people say that side effects will go away after treatment.....Guess who says this?...People who never treated....So if your one of these please don't offer advice if you have no clue about treatment.....anyone can can e-mail me at ***@**** to talk about treatment...or post treatment
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Avatar_f_tn
I had taken many treatments of interferon. I am now free of Hepatitis C because of Harvoni. Just never recovered from interferon. Since 2007 after being on interferon for 2 years, if brought me down so far that I have never been able to come back up with my energy. The fatigue some days is unbearable. It is difficult to get out of bed before noon on most days. Have to make myself get up and getting on the treadmill usually helps. Keep wishing that that this will go away but after seeing everyone's post I am beginning to think differently. Good luck to everyone. If anyone has any advice to help with fatigue please let me know.
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Avatar_f_tn
My Dr told me it was like practicing voodoo. My fatigue is awful. Have to make myself get up at noon. Keep hoping I will regain energy. It is now 6 months post tx with Harvoni.
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Avatar_f_tn
My thyroid is messed up too. Hypothyroid, now on mess. Have fatigue everyday. Have done like 4 tx of interferon. Wish I would have waited for Harvoni which cleared me after 12 weeks. Was hoping that fatigue would go away witness the hep c but have been clear for 6 months now and still tired everyday. Difficult to get up and get going. Tried to get Dr. To give me vit B 12 shot but he will not do because I am not anemic.
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Avatar_f_tn
If you have 1A then you can do Harvoni fro Gilead Pharmaceuticals. I did that tx and it is not bad and gets rid of hep in 12 weeks as long as you do not have cirrhosis, then it is 24 week tx.
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Avatar_f_tn
Just ordered a bottle. Hope it helps.will let you know.
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Avatar_f_tn
I do have fatigue very bad. It happened in 2005, was on tx for two hrs. Went from once a week shot to the everyday shot. Was able to get disability for the two yr tx. Went back to work which was very difficult. Worked for 3 yrs more and had to get on disability long term. It is very difficult to get out of bed each day. Usually by 11:00 I make myself get out of the bed and get on the treadmill. I do notice that if I get out of bed earlier and get myself ready I start to feel better for the day. Then the whole process starts over the next day. After I am out for a few hours I am exhausted when I get home. I find smoking a few hits of pot helps with my energy and here in AZ we have medical marijuana. I just ordered a bottle of that longed a and will see what it does. Asked the Dr to give me B12 shots but he will not because blood work is normal.

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I am going to try a bottle. Just ordered. Will let you know how it does.
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I have started taking glucosamine and it has helped with pain. I have been on morphine and oxycodone. Have been able to take less of pain mess.
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317787_tn?1428318779

Lonvida curcumin mentioned above is an antiinflammatory. I just started Zyaflamend which has curcumin in it in addition to other herbs which are antiinflammatory. If it helps it will be worth it. I started it a week ago for sciatica, not knowing it might help the brain. Very interesting. Thanks for sharing
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15291472_tn?1439658084
What kind of personality changes? And to what extent are you AWARE of these changes?

Do other people tell you that you are a "different person?"

Have you made (and acted on) MAJOR life decisions that affected and shocked other people?

I would be very interested to know if this is a common post-treatment symptom for many people, and what if anything folks have done about it.

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Avatar_m_tn
Thank you.
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