The Long-Term Side Effects after Tx Thread, for all

[DoubleDose]

I wanted to post a thread that could serve as a main point of communication for all of us who have treated and suffered serious, life altering side effects AFTER finishing therapy.  Hopefully questions, issues, personal experiences, and the feedback each of us has received from doctors can all be a part of this thread.  There seem to be two or three new separate threads each week relating to this subject, and I am not sure anyone gets the benefit of the postings on all of the related threads.  Maybe we can each use THIS thread to deal with this subject, and then all the inputs might be accessible to everyone interested, all on one single thread.  It also would be a good way to get a better idea of the numbers of us affected by this problem.  And specifically this thread pertains only to side effects experienced AFTER completing tx, that were NOT apparent before doing the therapy.  

Feel free to comment, ask questions, or state your own personal experience with this issue.  And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in.  It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.

[otterwatcher]

10 years post 26 weeks pegasys/riba. Side effects vision hearing issues,crippling fatigue,joint pain,fibromyalgia,brain fog,concentration problems,personality changes,night terrors,cold,lack of appetite,sleep problems and anxiety. The fatigue is the worst.Was diagnosed with Post Interferon Syndrome by my treating liver consultant 5 years post treatment and he said approx. 4% of his patients were left with similar side effects.

[Frieda1979]

I just found this article

http://www.ncbi.nlm.nih.gov/pubmed/19042060

another nutrient that is depleted during Hep C and interferone treatment is zinc.

As well as Vitamin A
http://www.ncbi.nlm.nih.gov/pubmed/7196691

Good luck to everyone! Don't give up, even after 13 years our bodies have the ability to recover if we provide them with the nutrients they need.

[Dee1956]

Than you for starting this thread.

[Dee1956]

Thanks Dointime, I was hoping you would not mind me asking the MODS to move it.  I thought it could help a lot of people desperate for help or even validation of their symptoms
Thanks
Dee

[Magnum]

What surprises me and both Hepatologists I was under treatment with, is that after 4 brutal treatments and finally Harvoni (which destroyed the Hep C), I feel a lot more energy now than in years. Keep in mind I'm two years post liver transplant. My energy level is great and as a performer, I have more energy and sing better than even a few years before the transplant.

The only thing I notice, and I don't know if it has anything to do with the Harvoni treatment, is my vision went from 20-30 to 20-50, which now requires me to wear glasses for distance. Funny thing is, I paid $180 for prescription glasses to see better up close, now I can see perfectly up close but blurry long distance. Strange...

Magnum

[Dee1956]

You are so right!  Would you mind moving this to  HCV post treatment?  I know people go there for help and I was thinking perhaps it would help others.
Oldtimer is right.  I'm still waiting to recover from thing or another :)
So happy to see you are still here.

[dointime]

Good suggestion Dee, thanks.  Info now posted on the post treatment site.
dt

[Frieda1979]

Would you recommend me the link to the post treatment page, so that I can read there as well? That  would be nice :)

[dointime]

Here's the link Frieda:
http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/Methylation-and-Genetic-Mutations/show/2862507

[dointime]

Frieda, I've also added to this thread on the subject:
http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/9-years-of-fatigue-and-joint-pain/show/2117532

[Frieda1979]

Thank you!

[dointime]

Hello Dee,
And you!  Not many old timers around here nowadays.  But we're still interferon survivors.  
dt  

[Littlesisterjeri]

My brother did the interferon treatment for 2 years it did not work and it caused so much nerve damage that he is in severe pain permanently it took three different treatments before he got cured of the hip C but he's in so much pain and they had gave him methadone the low dose of methadone two for his pain and and then when he needed it wasn't working he needed more cuz he was still in a lot of pain they took it away and they're giving him the less than that and his quality of life is 0 + when he lays in bed he's in so much pain he screams and cries at night and I don't know how to help them I'm going to go to the VA and yell at him but I want to know what else they could give him if if they can't give him more methadone is there any other pain medicine that would help they didn't nerve damage pain I mean what is everybody else taking for pain and he's not a heroin junkie or anything he's never done that it's they want to take away his pain medicine but they're not giving him anything instead he still good to have that severe pain I don't know what to do or what I should ask for I'd like to know if anybody else has severe pain from nerve damage caused from the interferon what they're giving with the doctors give them for pain it seems like I have to tell them what to give him because otherwise they don't give him anything or the right thing does any medication help you guys out there

[Dee1956]

Thank you so much for sharing!!!  So good to see you!  

[dointime]

Here's an article on methylation that's a bit easier to get through.

http://www.gapeysgrub.com/2013/03/methylation-mthfr-cbs-genetics.html

[dointime]

I am so glad that I found this information that you have posted.  Thank you.  I will certainly use it  As you say, there is so little guidance available and perhaps multiple issues, none of which are easy to diagnose or treat.  A regular GP (at least where I am), is going to look at you as if you have two heads and probably tell you to drink more water and goodbye.  I am sorry that you have had such a long ordeal.  I get the impression that it is typical for many.    

Anyway, while researching thyroid function I came across new information concerning genetic mutations which affect methylation in the body.  I had already done genetic testing via 123andme  (because I wanted to look at my il28b allele) so I had all my raw genetic data available.  Using the website GeneticGenie.org I translated this data into my methylation Profile and discovered that I have multiple mutations that affect my methylation and ability to use certain supplements, methylfolate being a huge issue (mine is low).  Apparently these mutations are very common and most people have some degree of methylation impairment.  Anyway I am posting an indepth video by Dr Ben Lynch who is a leading researcher in this area.  
https://www.youtube.com/watch?v=QRHif2aVPvw    

There's a lot of info but I wouldn't be surprised if these mutations might be a reason why some people have difficulty picking up and restoring their health after tx.  Dr Lynch says it is possible to fix IF you understand what you are doing.

dt  

[Frieda1979]

I also think it is relevant, since a) there are still plenty of people suffering and b) this is the only place where I could find experience of people suffering after Hep C treatment. And this immensely helped me to understand what might have happened to me and how maybe I could help myself.

I wrote a lot more in another thread. I hope it might help somebody. It took me years of my life to do all the research. I don't know if I understand enough, but at least with respect to the thyroid issue I found the support forums and the exchange of knowledge very valuable.

http://www.medhelp.org/posts/Hepatitis-C-Post-Treatment-Issues/long-term-after-effects-post-interferon/show/89426?personal_page_id=5017022

I got now diagnosed with severe pancreatic insufficiency. Malnutrition part 2 there you go. Exocrine pancreatic function is as far as I know now at least dependent on correct thyroid function and on appropriate amounts of Zinc and calcium.

I was neglecting Zinc and Calcium entirely most of the time, since it is so hard to fill up iron, magnesium, Vitamin C, B Vitamins, Vitamin D, A, think about proteins, Omega3 and so on...

Next week I plan to get my own lab tests on Zinc and Alkaline Phosphatase and then again in few months after supplementing Zinc and Calcium I will test Zinc ALP again to see whether I can observe some correlation between the two.

@dointime also think about Vitamin D. If your too low in Vitamin D the body cannot really absorb magnesium. And also, if you supplement Vitamin D you should always also supplement Magnesium. As otherwise because of the increased bone metabolism VItamin D supplementation can you make magnesium deficient.

[dointime]

It may be a really old thread but it's still relevant, especially to people who have attained SVR but still don't feel well.  I did 2 rounds of tx with interferon/riba.  Now 3rd round with DAAs just finished.  

I just noticed Frieda1979's post.  I've been testing for hypothyroid and was shocked when my values to B12, folate and ferritin have all come back very low.  My ALP is also low, under the normal range.  I am suspecting  more widespread deficiency, including low magnesium and low zinc, which as Frieda says is connected to low ALP.  

Lately, the following has been recognized:
"Malnutrition is a well-known complication of
advanced liver disease and is associated with
severe consequences if left untreated. It is critically
important to thoroughly assess the nutritional
status of all patients with chronic liver disease and
to provide nutritional support in these patients."

I don't have 'advanced' liver disease but I think ALL liver disease people would benefit.  I would certainly have liked to find out about my nutritional deficits years ago.  I am hoping now that if I can correct them then my thyroid will start working normally again.  The advice I want to give to everybody with hepC is to get their nutritional levels tested and maintained.  You don't need to have cirrhosis to get malnutrition when you have hepC.

dointime  

[hepcandme]

this is a really old thread

[william290]

none of the talk helps if no one in the medical field can help with the problem! What people want is to feel whole again and talking does nothing

[Frieda1979]

It is difficult to get tested on magnesium since the plasma levels are usually very stable.

There was however one value in my case that was always way below the reference range. It was alkaline phosphatase, but since it often happens together with hypothyroidism I thought that it is due to that and to be honest I didn't know that there is a connection between magnesium deficiency and low alkaline phosphatase.

I went back to my blood tests of alpha-Interferone plus Ribavirin therapy and I can literally see how the alkaline phosphatase was decreasing with each month... it still is very low in my case.

Just google "alkaline phosphatase magnesium deficiency"

If you have your blood tests, maybe you got tested on this as well. It could be an hint on the direction to look at.

[Mag49]

I believe this thread was started for the purpose of sharing information and questions having to do with long term side effects that some individuals have encountered post treatment. Perhaps you should start a thread for those who have not had any post tx long-term side effects rather than posting here where your point is questionable.

[Asha629]

Hi!

New to the site.  I have been a member of another Hep C on line forum for quite a while but talking about long term side effects is kind of taboo there.  I get it, we need to encourage people to treat, stay on treatment and beat this nasty disease.  I met Willy at a retreat and he told me to check out your site so here I am.

I had acute Hep C in May of 2010, geno 1a, was very sick (liver enzymes were over 1000 both AST and ALT) Doc pushed for me to do treatment, started in June, finished in November of 2010 and am SVR and YES,,,, very grateful to be able to say that!!!!!

Down side is my body has acted like it never went off treatment, typical stuff everyone else has mentioned, joint pain, muscle pain, muscle weakness, fainting/collapsing, vitamin deficiencies, bone pain, headaches, migraines and extreme fatigue.  I too saw my gastroenterologist 6 months post treatment to be told my persistent symptoms could not be related to treatment.  So my primary sent me to one specialist after another with no answers.  I just got back from the Mayo Clinic.  The hepatologist said yes we see long term side effects and sent me to their rheumatologist.  He said the best diagnosis he could give me and treat for is interferon induced fibromyalgia.  I just received my letters from both doctors for my medical records and both doctors state that although the eitiology of my symptoms may be unknown they cause may be due to treatment with interferon/ribavirin.  So I feel a bit more validated...finally... but a bit confused...

I have read all the posts and wow there was a lot of them here on the long term side effects and some mentioned signing a consent form.  How many of you guys actually signed a consent form?  How many of your doctors discussed the possibility of long term effects?  I do not feel as a patient I should have to go on line to find out about this later, my doctor has an ethical obligation to provide me all the information for me to be able to provide an informed consent.  She basically said I had no option, I needed to treat, most patients work (90%) through treatment and if you have side effects you are usually back to normal within a couple months.  I was given a side effects sheet from them, which really down played them and was sent my meds, that was it.  I did not learn till I was in to it and got on line.  Before my child is given a vaccine my primary gives me a sheet a reviews all the benefits and risks even if the risks are only 1% of the population and I have to sign a consent form.  I am confused as to why this did not happen.  I downloaded a consent form from the gastroenterology group in Northern California and it states in bold letters for their patients some sidef effects are irreversible, are they the exception to the rule, or did someone file a lawsuit and they decided to cover their butts from now on?

I am grateful to be SVR, grateful every day, but considering I was acute, and did not have any liver damage and interferon free trials were on the horizon I may have waited, got myself through the acute phase.  I don't know.  But at least if I still pursued treatment I would have been prepared, maybe put some money aside, paid off some bills while I was working as I am on disability and unable to work now.  Hindsight is always 20/20.

I would never discourage someone from treating, I would never want to die from Hep C or wish that on anyone.  I just do not understand the lack of information, informed consent is part of law and as a medical professional myself I believe in first do no harm and my doctor did not fulfill her ethical responsibility.

Phew.... got that off my chest !!! Thanks!!!  And yes, I am thinking of pursuing legal action, it may go absolutely nowhere but maybe someone will take my case and my doctor will at the very least get rattled enough to inform the next patient so that patient can make the best decision for his or her individual situation.  Seriously, if someone can sue McDonalds for hot coffee that burns them and win... well one can try....

[ShortLaura]

I was off TX for 1 1/2 years and now I am starting another round.  During that time, I had my knees checked and was diagnosed with cacification in my knees, which makes sense because I had been so inactive AND was taking Boniva for bone loss. So I did physical therapy, then began yoga classes and took glucosamine.  It worked really well for me.

[Diane12855]

OK, I read this whole thread, and nobody mentioned how we can REPORT our post tx sides. Who do we report it to? FDA? Does anybody know the answer to that?  What about the doctors believing that we should be dumped the day after we finish tx? We can argue all we want with each other on this forum, but that won't get their attention. How do we go about getting their attention?

Does anybody know the answers to these questions? If we all sent reports in, THAT may get some attention.

As for blaming SOC for post tx issues... when a person has one personality for 55 years, and after 1 year of SOC they have a completely different personality... going from an extrovert to an introvert... I think that is pretty good evidence that SOC is the culprit.

Just my thoughts..

Diane

[Willy50]

A case in point may have been a drug my own father used; Vioxx.

After having been on the drug, one day he stood up from lunch and immediately died.  It wasn't until several years later that the drug was to have been found to be unsafe, that a recall was ordered and FDA approval removed. (In this case Merck covered up the data that may have saved several thousands of lives)

http://www.wsws.org/articles/2004/nov2004/viox-n10.shtml

RE: our own TX.........I am looking forward to better days ahead.  I remain hopeful that if enough people make known the number and types of complaints that current SOC *may* have caused or contributed to some rough type of data base will emerge.  If there are sufficient numbers who report damage it may point towards a need and perhaps the needed academic or profit motive for some action.

Failing that..... it may simply establish that indeed SOC in various permutations (monotherapy, pegalated, w/ and wo riba, etc) may induce certain maladies.  For people who suffer such lasting side effects such threads may provide some sort of "proof" that such various types of disabilities may exist and may allow a speedier or easier path towards getting various medical or disability assistance from our government.  

I believe that a long term followup patient questionnaire may be suitable for this treatment so that it is better understood by the government arms that approve drugs (FDA) or by the arms which administer medicare and disability.

Willy

[Fnzol]

I would never believe that just because a drug had fda approval that it was safe.

In order to be approved, it must be shown to be safe and effective for its intended use based on the pre-market studies submitted to the agency for their review.  

Those studies, however, are performed on populations much smaller than those who will be exposed to the drug (or device) once marketed.  The general public, then, becomes the actual proving population, given the wider variety of genetics, habits, behaviors, prescribing approaches and behaviors of physicians, etc.  

Side effects and user issues that come to light in this larger population can lead to revisions to labeling (new or revised warnings), dosages, and may even cause the product to be recalled and removed from market.  It's an imperfect process, but works fairly well overall.  We only ever hear about the high profile cases, while thousands and thousands of products remain in use on and on.  

[Magnum]

After 4 treatment failures, I can say my looks have changed. I have darkness under my eyes and my face is thinner. Lately, shoulders, hands knees and elbows joints have been painful. Gastro believes it's Hep C related and will do blood work soon. As for mental problems solving or communicating with others, I see no difference after treatments. As for energy, it has dropped but I still have enough to do what I want. Exercising is more difficult now than before treating. All in all, these are the current treatments available. The choice is to treat or not right now or wait for less destructive drugs. Are you a gambler?

Magnum  

[DoubleDose]

First off, thanks Trish for your commentary.  To me it is right on the nose.  I appreciate your detailed explanation of why this discussion makes absolutely great sense, and in no way denigrates the SVR, or someone's attempts to achieve it.  I have said many times, I would treat again to get the SVR...and I am glad that I achieved my goal.  But the full story is absolutely important to all involved in undertaking tx.  And solutions are due to us as well!!!  

Desrt:  Thank you, Thank you, for the link you included above!!!  (here it is again for those that did not open and read it:

  http://www.msnbc.msn.com/id/40536739/ns/health-cancer/

This article illustrates EXACTLY how Interferon, and the HCV tx is really a work in progress, and that many, many more long term issues may surface as time goes on, and that all the real side and after effects are NEVER fully known until enough people provide lots of feedback, and enough time has passed.  Its a lesson to all who believe that Interferon has been fully 'vetted', and we know all about the long term effects.  NOT SO!!!  Not even close.  Even many doctors will say this as well.  They know how powerful this drug really is.

And a final comment to all:  If we don't start providing large scale feedback on the serious problems we are left with after interferon, then we will NEVER even have a chance to find any medical treatment, or intervention that might help.., no matter how much a longshot it may be,  we might as well just 'slink' off into the sunset licking our wounds saying 'oh well, what can you do', something is really going wrong, but I am not supposed to ask questions or make comments about THAT issue.  Just keep thanking our lucky stars we are SVR...  Might make somebody, somewhere believe we are opposed to the SVR!!!  Oh my......

Well I am just NOT joining that camp.

DoubleDose

[spectda]

Thanks for providing the link. It really seems contrary to what I would have expected. At the same time I would never believe that just because a drug had fda approval that it was safe.