Lingering SX from interferon/riba

[Andiamo1]

Many of us have talked about the lingering side effects of treatment.  I think it would be useful for us to gather statistics on how many have lingering sx and how many don't.  Some are mental and some are physical and that would also be useful.

My lingering side effects are severe insomnia, memory loss and a mild case of psoriasis.

If you select other, please leave a comment describing your experience.
Thanks.

[DoubleDose]

Treated twice.  Ended last tx in 2002, after 72 weeks, and became SVR.  Ongoing problems include joint pain and costochondritis, development of rosacea, salivary issues and mouth sores, thyroid dysfunction (medicated successfully), brain fog, cognitive problems, frequent fatigue, difficulty sleeping, numbness and some peripheral neuritis, lack of motivation, tendonitis, leftover ED which began on tx, and other minor issues.

Overall I try to rise above all of this, I workout, eat well, and run a business, oversee an extended family and grown kids..travel and do many things. I would rather feel good while doing all these things, but hey, I don't have much of a choice.  My symptoms all either appeared for the first time, or became much more exacerbated right after ending tx.  I did also see many specialized doctors, tops in their fields, to try to find diagnoses, answers, etc.  I have had just about every lab test out there, MRI's, CT Scans, etc., etc.  I guess the rheumatologist has come closest to providing any answer in saying that this is likely a 'post-interferon' syndrome, and that there is no way of knowing how that will play out in each individual case.  It happens to some of us, and apparently it can go away, remain the same, or get worse over time.  He gets many referrals for this same issue.

  I know my sx are more problematic than many others out there, and I also am happy to see that many have stated that they had no after-effects from tx....that is wonderful.  I never want to be a 'nay-sayer', and I always support treatment to get rid of the virus.  Its just unfortunate, that in a certain percentage of cases, we are left with horrible long term after effects.  We may have more susceptible immune systems, or be more vulnerable to developing permanent 'auto-immune' types of illnesses from the interferon stimulation.  I am still happy that the virus is gone, and will continue to work at overcoming the effects of the cure!

Thanks for doing this poll Andiamo.  Keep it going!  Hopefully you can get some 'critical mass' as far as number of responses.  It would be great to habe a representative breakdown of what the forum members have experienced as a result of tx.  Real data is always a good thing!

DoubleDose

[Dee1956]

After treating in 2008 and relapsing in 2009 I had a hard time bouncing back from tx.  I attributed to the fact that I relapsed however it took close to a year for many of the aches and pains to go away, same for mental problems, would just stare into space, could not find words for things. Very difficult to articulate.  I had cryoglobulinemia for close to two years very painful in my legs, could not work more than 6 hours a day.  I eventually lost my job 6 months after relapsing..  I am better now however I would say it took close to 2 years for many sx to get better.  Now on week 21 of Incivek triple and hoping for SVR this time and expect it will be at least 6  months to a year of recovery however we really do not know
Dee

[getridofitnow]

9 months post tx. Svr at 3 weeks. I have sever fatigue, joint aches,blurred vision, body temperature run 2 to 4 degrees low. Prior to tx i had none of these issues. Been to see 2 endocrinologist and liver dr. Wouldn't do it again even with svr.

[comeagain]

I have the same as trish !
"Probably my most significant "souvenir" is the joint pain and arthritis."

Not fun at all pain in many parts of the body scaring really ,hands and toes aswell also checked up with xray in foot it was arthritis.
I was on LCHF cost for five weeks and the swelling in hands dissapered didn´t lost or gained any weight though it was 90 kg when started and and the same when finished.

also had memory loss but thats much better odd thoughts I always have had .

I´m SVR and almost 2 years post.

ca

[vik97]

During my first tx which began 3 years ago and ended at 30 weeks because I was a slow responder, I had no side effects after 6 months except for the remnants of brain fog and memory loss.

Now I am 4 weeks post tx of my 2nd treatment (48 weeks) and there is either complete elimination or at least some improvement in all of my 19 side effects.

Vik

[can-do-man]

Before my first tx short term memory was never a problem, i never needed to keep notes at work, during treatments i expected it. Now one year post i'm still facing that problem. Maybe in time it will get better. The fatigue is unreal but i guess that goes with being cirrhotic.

cando

[Andiamo1]

Thanks Billy

[working dog]

reporting for my x....she did 48 weeks...geno 1a......8 years ago...has almost no sx from tx and is doing fine..i'm looking forward to tx soon...good luck with everything eric.....billy

[WriteItDown]

Reporting for my husband, who finished 24 weeks of tx on a clinical trial, peg + riba + PI, almost one year ago:

No lingering side effects except slightly bothersome eye dryness.

[toughluck]

All the above... severe rash and itching been 2 years since.

[Marcia2202]

1 3/4 years post tx.

Memory loss and cognitive problems. I have lost a whole chunk of my vocabulary in all 5 languages I speak. That is very annoying!

I still often feel kind of spaced out. Also, I have become bad at multitasking, which used to be one of my strengths.

Joint pain is finally gone!

[Cory255]

Experienced nausea, insomnia, memory loss, and fatigue for 6-7 months post TX.  7-8 months post TX - high blood pressure returned to normal.  One year post TX - No major effects lingering from TX.

Cory

[Andiamo1]

Dr D felt that my best choice to deal with anemia is to dose reduce Riba.  He felt that I was so saturated with Riba, that I could safely reduce and not take procrit.

There are plenty of risks associated with procrit and lately some indications that it might stimulate cancer growth as well as red blood cells.

I hope we can keep the thread on track to provide some stats about long term side effects.  

For accuracy sake, I hope the people with no sx post as well. Otherwise the numbers are meaningless.  I do believe after seeing the responses so far, that we couldn't get an idea about the probability of sx, but we can get an idea of the type and severity.

[smaug48]

Thanks for posting that study, Mike, it surprised me.  

I shouldn't have a problem becoming anemic on the next go round. I sure ain't lookin' forward to it, but if that what it takes to kill that dang dragon...

[evangelin]

Thank you  all very much for the encouragement.  It is appreciated!

Mike- Very interesting study which I had not seen.  Joe's labwork before starting his last TX was only 11. with a ref. range of 14-18 so he just doesn't have any wiggle room . the 2nd TX he had using daily Infergen ended up in a viral breakthrough seemingly caused by Riba reduction which doesn't agree with the study?  We went to a teaching hospital, that does lots of trials, for the last TX and they were so much more willing to push the limits for Joe by using lots of Procrit and less reduction.  I guess he did have somewhat of a viral breakthrough in the end because he had one reading of 80 IU/mL and it bounced up and down in the low hundreds and the last was 230 before throwing in the towel.  He had to have a reduction of Riba from 1400 -1200 (My memory is getting hazy on the numbers but I think that is right)  because the Procrit just wasn't working as well and he ended up with a transfusion. It couldn't be blamed on the Riba reduction as it was way too late in the game for still being detectable anyway.  All this time I have felt certain that Riba reduction was the kiss of death but that study brings it in to question.  Always more questions.  Thanks for the information though.
I also will be interested to see if Joe's hgb will stay up better now that he isn't eating a vegetarian diet.  I thought at the time that vegetarian was the best thing for cirrhosis but that has been proven incorrect from studies also.  I haven't actually found this study but was given this information from a nurse at a VA liver clinic.  She told me that cirrhotics actually need a high protein diet.  When I increased his protein, his albumin score improved.  I have no idea really how the extra protein will impact the hgb.  and it has been a long time since Joe's last labwork but I am looking forward to getting that done in January. It would be wonderful to see improvements, but staying the same is good too,with cirrhosis.
Thanks again,
Ev

Ev

[Trinity4]

"hopefully we would see greater gains if the virus was eliminated."   Not dealing in academics, I believe you would without a doubt.  

Trinity

[mikesimon]

You said: "Procrit would also have to be available in large amounts."

I saw this just this morning and found it interesting - regarding riba dose reduction.

From: Anemia in Treated-HCV Patients Bodes Well for Sustained Virologic Response
http://www.medscape.com/viewarticle/733388?src=mp&spon=3&uac=39980BG

"....In a large study, researchers found that patients who developed anemia were more likely to achieve sustained virologic response (SVR) than those who did not, despite decreased RBV dosing following a decline in hemoglobin levels. In addition, the virologic relapse rate wasn't increased in patients who cut back on RBV dose.

These data "firmly underscore the recommendation for RBV dose reduction as the primary strategy for management of treatment-related anemia," write Dr. Mark S. Sulkowski, of Johns Hopkins University School of Medicine in Baltimore, and colleagues in the November 10th issue of Gastroenterology....."

According to this riba does reduction doesn't seem to be the problem I thought it was. The key is to get anemic. I had no problem with that.

I wish you and Joe the absolute best.

Mike

[Bali05]

Hi Ev,

You are doing an absolutely astounding job for your husband
and deserve the Super Hero metal for treating  husband wifes.

b

[Trish77]

"He concluded another failed TX (#3) in the Fall of 2009.  He has cirrhosis and was not looking good after 15 months of Pegasys for 6 months or so, changing to  Daily Infergen  shots and Riba and Alinia throughout."

Joe has tried three times on real medication from what I read in Evangelin's post, along with infergen, alinia, etc.  Sounds like they've been trying all sorts of real medicine to no avail.  It would be nice if it had worked for Joe the first time the way it did for you and for me, wouldn't it.  I'm sure Evangelin and Joe would have preferred that too, instead of trying two more times and having it fail on them and then relying on supplements at some considerable cost to maintain Joe's liver health until something more appropriate for Joe comes along.  Real medicine that's tough to swallow is reality and dealing with the hand you've been dealt and I think Evangelin and Joe have been doing that with remarkable courage and grace.

[evangelin]

Actually, we would continue with HR's supplements because the cirrhotic liver would still be a problem but hopefully we would see greater gains if the virus was eliminated.  I have hopes for that but we have had a lot of disappointment which tempers my excitement.  The interferon signaling is still the problem for the non-responders and we would not go very long into TX unless it looked very promising.  I'm thinking 4 weeks to be undetected but I haven't consulted  experts on that number.  I'm just sort of thinking out loud , but in my mind, 12 weeks would be too long to wait for undetectable in Joe's case.  
We will see. The financial problem of funding TX looks harder than the supplements right now.  The way we did it last time is no longer available for us and the P.A. said his insurance may deny him the interferon and Riba because of his past failures to respond.  Procrit would also have to be available in large amounts.   It looks like a big hill to climb...again.(sigh)
Life is good for today and I am grateful,
Ev

[nygirl7]

Well now that Telepravir is just around the corner at last Joe can get off the supplements and take a real medication that can cure him just like it did Andiamo.  Would be a lot more sensible to just get rid of the disease at this point and at last you both willl be free of the exorbitant cost of all the supplements (which haven't still been proven to do anything) at least he'll have a 75% chance of clearing the virus for good!!!!!!!  

About time!

[Trinity4]

Oh boy

[evangelin]

I am reporting for my husband.
He concluded another failed TX (#3) in the Fall of 2009.  He has cirrhosis and was not looking good after 15 months of Pegasys for 6 months or so, changing to  Daily Infergen  shots and Riba and Alinia throughout. He looked gaunt, had no energy (sleeping all the time) , brain fog and was showing mild ascites.  As soon as he stopped TX, he started Low doseNaltrexone and HR's supplements.  He had already taken HR's supplements before TX and started back in full force after quitting.  His improvements showed up incredibly fast.  Think weeks instead of months.  He did not recover like this at all after the first two which were only 13 weeks each before considered failed.  By the 2nd round, it was looking really bad for him and he was not expected to be able to treat again as his labs were looking too dreadful.  HR's supplements turned him around slowly over the course of 8 months or so and he got so much better that the PA said to go ahead and try TX again.  This last one was 15 months without ever getting to undetectable, yet he recovered the fastest.  It doesn't make any sense but I think it was the low-dose Naltrexone that did it.  The supplements work slower than that,  it would seem from others reports and our own experience.  Joe had never used Low Dose Naltrexone before, but when I saw that he was going to fail again, I went to his primary care physician to plead my case to try LDN and he had no problem with it and felt it was harmless to try because it is such a tiny dose.
I am not selling anything .  LDN is made from a tiny dose of an old drug which you have to have compounded.  You have to get a Dr. to prescribe it.  It isn't expensive and there is no big money trail to follow.  I just am reporting our experience.  I don't know if it would be this helpful to everyone but the combination of HR's supplements and the LDN is working to keep Joe stable and he was diagnosed almost 7 years ago with cirrhosis.  His platelets were already under 100 when diagnosed. As you know, you don't get to cirrhosis over night so it is hard to say how long he may have had it but I can say he was showing signs of muscle mass being lost 1.5- 2 yrs prior to being diagnosed, but we didn't know why.    
I so don't want to get in to an ugly debate about this.  I just want to report our experience and let it help whoever it might. Fighting about the supplements makes me weary and stressed so other than this re-post of Joe's experience, I won't plan to respond. LDN and supplements will not cure HCV but it sure is helping some people that have no better alternatives.  I can't say with any certainty that either LDN or supplements don't have potential harm but I can say it has only appeared to help Joe so far and we were in a category that made the risk worth it.  
Joe does not appear to be worse off from his miserable 15 month TX. The ascites does appear to be less although some days I think his belly looks a little extra poochy but not bad.  You would have to be looking with a critical eye to tell.  I have more brain fog than Joe does at this point and I am supposedly the healthy one.  His energy is very descent for someone with cirrhosis.  We are hoping to try Teleprevir at some point.
I don't know if LDN would help clear up some of the SX of interferon or not but I would think it might help even more in someone that achieved SVR but of course thier is no proof. Just logical guessing. Could it be a placebo effect?  Maybe , but I doubt it because Joe doesn't pay much attention to what I give him. He just dutifully swallows because he trusts me and doesn't want to study the supplement  issue.   I hope I never make him sorry.  
Best wishes,
Ev

[lapis]

20 months post tx.  Random dry skin rashes which itch, never had these before.  Cognitive changes, just don't feel as "sharp" intellectually as I did before tx.