Update on Fibromyalgia/CFS post tx, for all

[sfbaygirl]

Hi everyone!
I posted the other day about taking way too much Neurontin (prescribed for Fibromyalgia and seisures) and feeling like I was jumping out of my sking, the doc said to stop for a day and start over on ONE instead of the THREE pills I was taking afer three days. At that time the pain from joint, muscle was not bad, just the anxiety, diahrea, stumbling, dizzness, NO eating, vomitting, weakness etc. I stopped that day and was ecstatic that I found the cause. That night the pain returned. My duragesic patches had run out (after 3 days as the should) and the Neurontin had left my body. I started getting that Horrible fibromyalgia/CFS appearing...not bad, but I felt it. Next morning I was at a pain scale of 12 (out of 10 high) I had someone pick up the patches for pain and took one Neurontin that night. It takes at least 6 hours for these patches to work, so I was in agony all day. Finally, the patches and one Neurontin kicked in and I felt like a new person. I can walk more that 7 feet, I am not jumping outta my skin etc.

Thursday, I came back to help move again (a whole nother nightmare in itself) But I was at least human again. So much stress with the move....ONLY move if you pack the boxes yourself!!!! I am on the duragesic and one Neurontin now, still with some pain (at times a 7) but feel so much better.

I am really glad that we have only the window washers and cable guy today (Sat) and Monday the  big movers start again...but still am thankful I figured out what was wrong. Tuesday I get a Lower GI Scope and hope the bleeding is figured out. That will be fun taking that tasty stuff and am now back on the Lovinox (sp) shots for the blood thinning. When I do too much I seem to bleed more. After the surgery 8 years ago in my shoulder, I wondered why I hurt there so much in the hospital (after pain meds were removed), it was back this morningg, but the heating pad helped a lot (besides the patches etc) I am thinking ONE Neurontin isn't enough and perhaps two is.....Seems like I do have some fibromyalgia (what Neurontin is for) and it started in the hospital. I sure as hell hope not, but am trying to think positive as the Neurontin worked at THREE!
No way I can take that many though.

As I said before, take these SOC HEP C drugs with extreme caution, I developed some autoimmune diseases I never expected, especially since I was SO close to being done. Watch your body, get lots of blood work and see an excellent DR.

Sorry to ramble on, but I care about all these new people getting on these drugs and wanted to let all my buddies know what has been going on.

Be well and love to you all!
Linda

PS.  I looked at my Script label and it said to take 3 a day!!!! While in pain he expected me to REMEMBER to take 1 for a week, 2 the next week (see how I feel) and then 3 a day for the third week. I took 1 first night, two second nite, three third night and wanted to to go take some sleeping pills and go to sleep as I was jumping outta my sking.

[jmjm530]

First just let me say how bad I feel that you have to go through all this. A lot of us had treatment bad, including myself, but it just seems that things got heaped on you at the end. And I hear you about taking SOC drugs "with extreme caution" and while I often sound like a broken record on this, it comes out of stories like yours and others. Hopefully, the further away you get from the drugs, the better you will start to feel.

As to your doctor and the "3 a day". I won't comment on your particular doctor because this is so common, but in general, doctors really have to wake up and take some responsibility when the prescribe meds.

I can't remember how many times I had to slow their medical mouths down while they were walking backwards out of the treatment room explaining to me how to take three or four different drugs in a rat-tat-tat fashion that not even a normal person could understand or remember, no less someone on SOC. Why can't they give clearly written handouts/instructions that spell things out?

Sorry for the rant but it just made me mad when I saw what you went through and I believe you mentioned that your doctor's reponse was to have a good chuckle? What a f****. His response should have been to tell his office staff to give future patients written instructions from now on, after first apologizing.

Feel better soon.

-- Jim

[BayAreaWomen]

Linda, I can feel your pain because I too have developed severe hip pain and I know I will eventually need a hip replacement. This has all started since the treatment. I have 12 weeks to go. Monday I am scheduled to have cortisone injection in my hip for the pain. Do you know or anyone know if that will interfere with the tx med ( riba/pegasys. Thanks, I hope you get better dear. Barbara

[orphanedhawk]

I am so glad you wrote. It sounds like you are figuring out the dosage that works for you. Doctors should send us home with their instructions, dosages and whatever else is relevent, typed out simply and clearly for those of us with faulty memories or foggy brains.
   You are so right to remind people not to take these drugs lightly. They are strong and all have sideeffects and the potential for causing problems.
   I'm dancingly happy after my last visit with Dr.F. who is lowering my interferon to help me get off neupogen.
   May you have the happiest, gentlest most loving Mother's Day ever!
  And we will take that walk by the lake, someday. I promise:)     OH

[rosebud57]

bay - this hip pain might go away after tx. bug mentioned she was experiencing hip pain at tx end.  if you see this bug, share how you are feeling now, is your hip feeling better?

my became only a little sore, in my case i thought it was because i was lying down so much, as no energy to be up.  (tended to hole-up in my room to be in dark, quiet room.

[sfbaygirl]

Gawd, do I remember your warnings about these drugs!! I took you words lightly and went on my merry way, feeling awful, but not having the heavy duty sx I have now; most likely for life. This is why every chance I can, I warn others to watch out, as you did. I wish I would have listened to you and been more educated about these dangers. Of course, how was I to know? Although I felt like death warmed over, I thought I was doing good for myself. Granted, not many experience what I have dealt with over the past several months when I quit at 47 weeks. Who would have known? How do we tell others to watch out when their dr's tell them this is the best tx, at the moment, and don't warn them of the long term sx they may have in the future. I had the worse dr, until near the end I went to Gish's office. Didn't see him much... I am sure by then it was too late....All this extending and doubling etc, worries me so much now for all the people on tx on our forum.

I now have to take blood thinners for life (back on shots) and have Ischemic Colitis for life (with a horrendeous diet to go with it; if I don't follow it I suffer like no tomorrow). This is an autoimmune condition. Now with the CFS/Fibro or some OTHER autoimmune disease I am feeling pretty damn sick. I have lost 30 LBS since tx and looking/having the worse pain I have ever encountered in my life. The only thing that doesn't hurt is my head! My head was always the worst.

I have to look at this with a hopeful outlook. I thank everyday I don't hurt and am optimistic that it won't be back. How else should I look at my life these days? I do have more energy, I can now walk around do things I couldn't on tx, when not in agony. I am not going to get depressed as that makes it all worse. I certainly hope that I continue to feel this way, what would be the good of not?

Definately, I am a fan of your warnings and although I know you have gotten grief from others about it, I am going to continue to pass the same word you do. I just wish that dr's would be more careful about warning, writing down instructions and following up with us. I won't get angry, it will only hurt ME, but I want to try and help all those who go along like I did thinking it will all be okay.

I am not saying others should NOT go on SOC. I am saying, if you are a stage 0-1, think long and hard about taking these really toxic drugs. There are knew ones on the way. Of course, who knows how these will work....but at least they will be less time.  

I wish all well and want us all to achieve SVR without these horrible post tx sx, like autoimmune diseases like I did. If you are stages 3 or 4, you need to take more risk (so understandable) I didn't. Although, I was aging, and having symptoms, ins. lapsing, so I thought I HAD to when I really didn't. I have been too sick to get my PCR, so perhaps I will be extremely happy I did all the tx if I am clear. I guess you need to be careful what you wish for, it could be worse.

I do have an optimistic attitude that all will be fine, esp. if I am SVR. So perhaps it was worth it...I can't say it wasnt'. Just want everyone to know that this is a dangerous tx and beware- think carefully about why and when.  

Best to you and thanks Jim, I wish I would have taken your advise more to heart.

Linda

[ladybug52]

You poor sweet thing you! You have said it so well, these meds are not to be taken lightly! You were determined to finish, even after being in ICU! Another example of our brains on riba.
I'm so sorry that I haven't posted sooner. What a mess. I think of you, but it's so much to process, what all you have been thru. I'm so sorry I have not been a better friend. You are  going thru stuff that I can't even imagine.
I'm glad you are choosing to be optimistic, that's the Linda we all know and love! I'm glad you are here to show both sides of the coin. Most people will never go thru your extreme sides, but it's ok not to sugarcoat the possible long term side effects. You're so brave! You influenced me going in and out of tx, more than you realize.
Gentle hugs,
Bug

[ladybug52]

How are you? My brain is still mush, I can't believe you went for your Master's during tx!
I still have left hip pain,some days worse than others. Actually it's night time that the hip bothers me most.
Though I like to blame JmJm for my lack of sleep, (Not what it sounds like I'm sure you know!) it's usually the hip that wakes me up and keeps me awake.
Happy Mothers Day, have a great relaxing day!
Hugs,
Bug

[rosebud57]

sfbay - yes i agree (as an observer mostly) your situation was by far the worst i have seen since coming to this forum.  and you have been such a trooper throughout.  no doubt many who have to take the longer course are at more risk.   it is very difficult to advocate for ourselves in our weakend state.

i really like to see that people like jmjm remind get that bloodwork done or find out about this or whatever info he passes on.   these drugs seem to work but the toll that it takes on the body is very high and we need to be mindful of the damage they can cause, watch for the signs and address that immediately upon noticing, even the rare symptoms happen to some. and i think that might have been a lot of what you experienced.

although it is completely gone i was really bothered by the mucous stuff in my sinuses, throat, and esphogas that didn't even appear until the last few weeks, i was coughing all the time, choking on this stuff caught in my throat, and it disrupted my sleep, it was only after i saw two docs (one an allergy specialist) that i was once again told i had gerd, it was not asthma (my record says i have asthma, but i dont - long story).  that was the last major discomfort i had with tx. i ranted and raved about different stuff mostly about fungus and acidophilis as a cure.  on chemo websites it says that mycobacteria and fungus are common after tx.  but when i kept tellling docs something wrong no one took me serioiusly.  they would tell me i don't see anything...


bug - i am doing good, i was working in the garden just before dusk, so the weather was so nice and cool.  dug up my old garden, just a small one and planted my new tomatoes and bell peppers.  i have very small yard so i don't put too much in.  watered the yard and planted some flowers.  it was nice.

[ladybug52]

Sounds great. My best Mother's day was when the kids helped me work on building a flower garden.
Have a good one!
Bug

[jmjm530]

You won't win any popularity contests telling people what can happen with these drugs but hopefully you'll help some here make a better decisions, especially those with little or no liver damage. I've collected a number of threads regarding side effects both on treatment and after, and I've put this thread on top of the list after reading your last hearfelt post. Please feel free to copy the list and post it whenever you think important. It's not my list, it belongs to the forum and is quite representative of these issues, giving both sides of the story. Of course you didn't know what was going to happen, how could you, how can any of us. And yes, what happened to you, only happens to a minority, but I'm sure that's no consolation. Again, hopefully things will get a lot better in the not too distant future. Here is the list of thread:

http://www.medhelp.org/forums/Hepatitis-Community/messages/965.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html
http://www.medhelp.org/forums/Hepatitis/messages/45385.html
http://www.medhelp.org/forums/Hepatitis/messages/45437.html
http://www.medhelp.org/forums/Hepatitis/messages/45337.html

[Valtod]

Linda, I'm really sorry for what happened to you! And I totally agree with your warning about what a "silent killer" the Treatment itself  can be.

Remember the time when you said you and I should watch out for each other and hopefully finish Tx at the same time? After I heard what happened to you, I was devastated. I couldn't stop talking about you to my family. I took your experience as a very bad omen - now in week 56 I really hate this Tx! My labs seem stable but I do have some autoimmune disorder already - horrible rash, red puffy eyelids, skin peeling under my eyes, psoriasis, whole body feels ravaged on the inside, intestines hurt. And the symptoms get worse week by week. I know that, if I get alive on the other side of this nightmare, I'll never be the same person.

I mentioned this long time ago: when making a decision to treat or not to treat, people make a huge mistake believing that the worst thing that can happen to them is  "not getting cured" at the end. They think it's a lottery - you may not win, but you don't lose either. Well, this is not the Lottery, this is a f***ing Russian roulette! Yes, you may win, but your losses may be enormous too...

This is my second Tx and seventh year dealing exclusively with this horrible disease and poisonous cruel treatment. And I'm CONVINCED that the long-term post-Tx conditions, Tx triggered complications and severely worsened quality of life are seriously (and probably intentionally) underreported and swept under the carpet. One day - maybe 5 or 10 years from now - there'll be an honest statistical analysis and assessment of the negative consequences of the current HCV treatment with PEG/RBV. And it'll be a sad and scary story of autoimmune disorders, organ damage, thyroid dysfunction, psychiatric disorders, higher levels of cancer, diabetes, suicides, and ruined lives at enormous financial and social cost.

I have a friend who did 3 unsuccessful full-length treatments (INF/RBV, PEGIntron/RBV and Pegasys/RBV). Now he's only half the man he used to be. No, let me take this back: he's less than a quarter the man he used to be - almost constant brainfog, apathy, depression, thyroid destroyed, gained a lot of weight, high blood pressure, diabetes, lost his job, constantly tired, pre-cirrhotic. He's 55, he looks 85. Last time I spoke with him, he said he considers the biggest tragedy of his life not the nasty chronic disease, but the triple nightmare of "treatment" that he "chose" to go through.

Linda, I really hope you'll find strength to overcome the pain and disappointment. I wish you all the best!

[OceanLiver]

Finally came over to this site and found you.  So sorry you are still going trhough so much suffering.  but as always you find the time and energy to help others.  i particullarly appreciate your cautionary words.  Because I am having to make a big decision.  I started double dosing at week 25 and cleared at about week 33.  They now want me to stay on the high dose as long as possible and remain treating for 9 months more.  The double dosing  ( and higher riba) really kicked my but.  I am feeling that I could go on with regular SOC but not the higher doses.  I know that in my situation the theory is more medicine, more time better SVR results.  My instincts are that it is too much for me.  I will stay on as long as I can for liver histology impovement, if nothing else.  So thanks again for the words of caution.  I pray that you will feel better soon.  

[GrandmaA]

Linda,
Maybe some of the side effects will go away in time as you heal and the drugs leave your body. Sounds like you could use a nice massage.

Feel better and thanks for helping so many others.

GrandmaA

[franke566]

To treat or not to treat that is not the question.  How many of us were told there could be side effects during treatment?  How many of us were told there could be life long dehabilitating side effects after treatment?  I asked my Hepatologist before treatment what the side effects would be and he said aches, pains, depression ; usually mild, nausea, sleeplessness, fatigue, irritability and so on.  I asked will they go away?  the answer?  Yes! I am nearly 4 years off Tx and my life is endless suffering.  I won't go thru the laundry list again.  I don't want to frighten anyone but I don't think those who are in treatment are looking at the whole picture.  My side effects during treatment were tolerable.  I woke up one morning with Olcranon bursas on both elbows.  I never heard of this-didn't know what it was so I go to my PCP and he sends me to a surgeon to have them removed.  No connection was made to the Interferon.  I asked my Hep doctor and he said doubtful.  Then I began getting sinus infections every other month.  Hep doctor:  well your immune system is down but that will clear after treatment.  Aches and pains?  They will go away.  Depression?  I'll set you up with a Psychologist.  By then I was having panic attacks.  Heart rates of 190 and above and had to be converted numerous times.  Now nearly 4 years after Tx I had to sell my business and I am currently living with one of my kids to be near the medical center here in Houston.  My wife is in our home in S Padre Island.  I came here for answers.  I was told I have Fibromyalgia and put on Lyrica.  Prestiq for depression.  Betpace for my heart. Xanax for my anxiety and just had a bout of Pneumonia.  Yesterday I saw my Pulmonologist since getting out of the hospital and she noticed I listed Lyrica as one of my drugs and she asked why? I said because I have Fibromyalgia and she said no. You took the Interferon and that is why you have all these illnesses-I see it everyday.  She is the only doctor other than my Psychologist who linked all this to the Interferon.  To make matters worse she looked at my hands and feet and said you have Edema too!  I will call your heart Dr and have him prescribe Lasix aqnd then she hands me a Rx for Xopenex, Advair and Spiriva.  I said why and she said you have COPD!  What?  COPD!  How could I have COPD, I asked.  She said do you smoke?  No.  Ever workat a refinery? Nope.  Well what do you do?  I was a fishing guide.  I work in the fresh air-all my life.  Then I don't know, she said, maybe it has something to do with the Interferon!  Very bad drug, very bad! She is from India but one of Baylor Universitys finest.  So okay, I've found this forum and learned more in 3 days than 4 years!  The Good, The Bad and The Ugly side of Interferon.  It's a **** shoot!  Toss the dice, spin the wheel.  I am only angry about one thing.  The doctor did not tell me there is an outside chance the drug might just kill me.  Given the alternative he presented me with-less than 5 years I probably would have taken the Tx anyway 'cause I'm a gamblin man but knowing what I know now...no way, I'd rather die with a fishing pole in my hand than wind up in a hospice or having to put my wife and children thru this.  I'm going home!  Been up all night reading posts and comments and I see no point in beating it into the ground anymore.  Good luck to all. franke566