Inteferon symptoms long after stopping tx?

[miked]

I failed tx at week 32 which was over a year ago.

Recently I've had symptoms of what I swear is Interferon; speedy feeling, achey neck and shoulders, ringing in my ears and my hair is thinning.

Has anyone else had this happen to them after stoppoing tx for such a long time?  It's like an Interferon "hangover".

[jingo 59]

Thanks for info :-)

[jmjm530]

Is this what it sounds and looks like?
http://www.dermnetnz.org/systemic/notalgia-paraesthetica.html

From my personal experience, dermatologists don't often get their diagnosis right. I've been to five since I started treatment.

In my case, I had various skin problems while treating including intense itching on face, chest and neck after I finished treating.  Hard to tell because I had so much going on, but my guess is that the itching was a combination of and/or's, including contact dermatitis, sebboreah dermatitis, and rosacea.

Since treatment lowers the immune system making you more suspectible to bacterial and fungal infections, I would definitely point the dermatologist in that direction.

In addition to numerous topicals, what I found helpful was to avoid soap and use Cetaphil Mild Cleanser instead. Hygeine is also very important for the fungal and bacterial issues, so I showered once a day, washed infected areas twice a day, switched towels after every use, always wore fresh underwear, clean sheets every couple of days. I also used detergents without added perfumes and wore loose, all cotton clothing, preferably white. When I had to wear wool, I would wear a white silk undershirt or long Johns underneath.

Long story short, after about 4-5 months after treatment ended, the itching pretty much stopped.

Hope you feel better soon.

-- Jim

[FlGuy]

Not a lot of people look at these older threads, although discussion about linger effects seems to take place around these parts.  Although I did not have the treatment-related skins issues, I've read many times from sufferers that the effects of too much bathing can have drying effect and might cause even more discomfort.  If I recall correctly, also references to chlorine content in some cities' water systems that could have impact.  Good luck to you.

[jingo 59]

Hi folks...I have hep c, genotype 1. I went on combination therapy a bit over 2 years ago now. After 3 months of hell there was no reduction in viral load etc etc and I was taken off. Soon after I started to get annoying itching that felt like prickly heat..always starting after sundown. As it became worse I tested for everything I could think of, even scabies. A dermatologist told me it was a rare condition called notalgia paresthetica but after all the steroid creams, lotions etc it just continued to get worse. From the elbows upward on the outer arms and around the shoulder blades is the area affected. It has continued to get worse......I'm nearly insane from lack of sleep. Up every night 4 times and more having cool showers and applying cooling lotions, I'm convinced that it has been brought on by Inteferon/Ribavirin!! I have a good diet, no alcohol, drugs etc.....no msg in food. Nothing abates the condition. I'm on an anti anxiety drug now called Doxepin which has stemmed some of the night time frenzy but it really just enables me to fall asleep again after midnight showers.....the itch is still there.
Has anyone else had this symptom after treatment?? If anyone can help I would be very grateful. Thanks

[sunspot]

Hi Andy. We were co-treating at the same time.I am also virus free but no big after sx. I'm sorry you still are having problems and I hope it clears for you.

[ricochete]

"Of all the gin joints in all the towns in all the world, he walks into mine." hey Andy Capp....guess who?

[Andy Capp]

Hello all,

I was on 48 week combo treatment between 2/2005 and 1/2006.  Usual hellacious side effects.  Achieved SVR as of 7/2006 and although many of the treatment side effects are gone, I am far from feeling healthy and fit.

The three main after-effects are fatigue, muscle waisting in lower extremities, and extreme bruising and skin tearing in the lower extremities.

My family doctor is at a loss (extensive blood work all within normal ranges).  He thinks that the bruising and skin tearing is from the Interferon and says that it may get better and may not (makes me feel SO confident).

I didn't have any side effects before treatment!  OK, great, the virus is no longer detectable in my blood but am I going to have these drug after-effects for life?  It makes me feel like I'm caught in the horror film, "The Operation Was a Success But the Patient Died."

Good thread...keep posting.

[ricochete]

I am 21 months post 48 weeks of the most pure and utter hell. I have been reading forums and posting for 3 years and just now finally reading THE TRUTH about treatment and recovery. I agree with many of the posts here. I thought for sure that I would be recovered in a year, then two...now I wonder how long if ever it will really take. I don't recommend this current treatment it's way too hard on the body. I know many doctors think it does permanent damage on a deep cellular level. Based on how I feel I have to agree. Oh BTW there is NOTHING wrong with me other than the interferon hangover, I have a very healthy lifestyle and I have no health problems that can be documented on physical exam, tests, or labs, my fibrosure test shows ZERO damage to my liver.

[Jaideep]

Hi Everyone,

new to this forum. have completed treatment of HCV genotype 3 with peg-interferon before 6 months. what brought me to this site was my itching problem allover my body.
please advice if its normal or some more complications have arrived. waiting for guidence. Thanks a lot.

[andry20]

hello friends.i have been changed my id.hope u remember me.i dont want introduce myself.
as for me. realy interferon ruined my best younghood years. i am 1 year post tx.sexual dysfunction,low amount of sperm,erectyle dysfunction,chronic fatik,depression,anxiety

************** interferon alpha2b

[hippygem]

You said it all, im experiencing everything that you mentioned in the above, I am 2yrs post tx, geno 3, fibrosis 2, relapser.  Im quite surprised that you as an SVR person is experiencing these symptoms.
I was wondering if you could post some of this in the ozzy website, there is a post there that a hep c council co-ordinater is trying to put together a 'Working Well'with hepatitis c for educational purposes, which will be put into a 'media format', your contribution and any others from here would be most welcome. You will find it in the 'Hepatitis C Council - News and Information section if you go into the site, posted by 'nicci'.  I have already added my input into it, was very taxing on the mind to say the least.

http://hepcaustralia.thruhere.net

linda

[hippygem]

If the link above doesnt work try: http://hepcaustralia.ludogaming.com.au/forums/index.php

[miked]

I have very low blodd pressure because I run 15-20 miles/week.  Dunno but I'm getting it checked out.  Thanks.

[DoubleDose]

I do not believe that the post-tx problems are from the interferon 'hanging around' as much as they are from the effects of the interferon on our nervous system.  I think the interferon itself is long gone after a few months off therapy, BUT the changes to our system, which has been revved up, and drastically altered, continue on and on in some people (myself included).  I believe the interferon creates cellular and nervous system changes that in turn create our nasty symptoms after therapy.

  Now some on the board always want to debate the existence of post tx, interferon induced symptoms, but in my view it is pretty plain and clear to understand.  Many of us often have none of these problems before therapy, and we may develop some during therapy.  After therapy is over, the symptoms seem to hit hard, and last a long time for many of us.  I doubt that we are all experiencing the effects of aging, coincidentally, right after ending tx, since many of us had no major problems before tx.  To me it seems obvious that interferon is the culprit, and I guess the answers to these problems may vary individually for post-tx'ers.  Some seem to clear the sx in months to a few years...while others seem to have persistent sx that remain the same in intensity.

There needs to be much more research on this topic, and an honest look at the problem by doctors and drug companies.  Maybe we can come up with some therapies to treat the effects of therapy!  

My problems have included post-tx joint pain, sun-sensitivity, fatigue, balance issues, eye irritation and dryness, much neck, shoulder, and upper back tension, pain, and sometimes numbness, anxiety, and some depression, or apathy.  
My problems come in waves or cycles, and seem to be getting a little bit better over time, though I cannot say for sure yet.  I am three years post-tx, and SVR.  I also did a LOT of interferon, over two tx'es, and 33 months total tx time.  

I wonder how many other post-tx members have had similar post tx symptoms.

To All Members:
PLEASE REPLY if you have not yet described your post-tx experiences.

DoubleDose

[cuteus]

are you training for a marathon?? WOW!  yeah, your bp is probably ok, but have it check anyway.  you might want to add a neuro appt to the mix and test for nerve damage or get an MRI of the cervical and lumbar area. Disc degeneration can also cause the symptoms you described. An MRI might be a good place to start!

[cuteus]

ringing in the ears can be from high blood pressure, I would suggest a visit to the GP for testing.  We can'[t be thinking interferon each time something shows up for the rest of our lives.  You need a check up. bloodwork, cardiac eval, endocrinology

[miked]

Thanks again...I really do appreciate this board.

Right now my ears are ringing and I feel like speedy-gonzales.  something's going on.

amommy, I think I will have the thyroid checked just to be safe.  

Scott, I had many of the same thoughts about the after effects of INF.  It could be that stuff somehow lingering in my system.

[avidreader]

While I agree that many of us continue to experience SX from treatment post SVR status, many of us also experience symptoms similar to treatment symptoms both prior to and post treatment from the virus itself. I know that I felt so awful prior to treatment that during the first 12 weeks of treatment I didn't feel much difference. It wasn't until I got into the 30th week of treatment + that I really felt knocked for a loop by the meds and I was on 1200 or 1400 mgs of RIBA for 52 weeks. In short all I'm really saying is that it's not a case of either/or--both could be reasonable explanations and the medical community may not be able to give her an answer because of their failure to do good post treatment studies.

[amommy]

I would have your primary care run a cbc and a thyroid blood test.  It is simple, relatively painless, and it will give you a lot of answers if anything else is going on!  It really does sound like a lot of sx of the virus, but as far as I'm concerned you can't be too sure.  I didn't mean to scare you.  But it is worth a blood test.

[Kalio1]

He said he stopped treatment over a year ago. It doesnt make sense that a year would go by and then he would suddenly have post treatment symptoms caused by Interferon. It makes more sense it is due to some other reason, his thyroid, the virus or some other reason.

[miked]

You have me scared.  I went out on a couple websites and saw some of my symptoms as hypothyroidism.  Other symptoms are not me at all...I have plenty of energy, sleeping well, no weight gain, etc.

Should I call my gasto doc and family GP?  Or ignore it....honestly I'm sick of being sick.

[amommy]

speedy feeling and hairloss are two major sx of thryoid issues.  I know this isn't common, but isn't it goofy who just experienced a thyroid issue 6 months post tx?  I believe he mentioned that just a few days ago.

[miked]

I experienced a vrial breakthrough at week 32 and was made to stop.  Yes I still have the virus.

Never had my thyroid checked.  During tx they checked for thyroid problems and found none.  What are the symptoms of that?

[cigaso]

Miked,
I stopped treatment over a year ago. I tx for 20 weeks. I'm trying to remember where HCV left off and tx picked up and then HCV picked back up again. I wasn't loosing my hair before tx, but I did during tx. After tx my hair grew back, now it's thinning again. No aches or pains yet. However, long gone is that ever so slight yellow hue from my skin. Be well.