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.

[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