what is post interferon syndrome

[gibsongal]

just saw otto post on the other thread.. was your treatment harder  for you than other people.?

[dontworry_behappy1]

It's when people have continued effects of interferon that never go away.  
"melanoma.org/...post-interferon"  will give you some insight that interferon use has it's recovery time.  It can be a very long process for some and others
(post-interferon syndrome) have effects that have never gone away.  

[RickVaug]

There seems to be 4 types of people:

1) Folks that treat and reach SVR with minimal side effects

2) Folks that treat and don't reach SVR and have minimal side effects

3) Folks that treat and reach SVR and have horrible side effects during and long after treatment stops

4) Folks that treat and don't reach SVR and have horrible side effects during and long after treatment

I fall into group 4, I ended up on this forum looking for help / answers / clues as to why my life has changed so much just because of the treatment. I have also found I am not alone.

The Hep C without treatment should have a gradual effect on your quality of life the longer you have it.
The treatment seemed to cause an immediate effect ( in my case at least)

My wife at the time (now ex) also underwent treatment the same time I did (although we had different genotypes mine 1A hers 2C so we didn't get it from the other). She had mild side effects and was SVR after 6 months. The only thing she still says is that "The treatment sucked the life out of her)

IMHO there doesn't appear to be a norm that the treatment effects everyone the same but differently.
All I want to know is how do I get back to being semi-normal without feeling like I haven't slept in days and dragging myself around with no joy in life because I am so tired

[otterwatcher]

if you discover it please let me know!

[gibsongal]

"All I want to know is how do I get back to being semi-normal without feeling like I haven't slept in days and dragging myself around with no joy in life because I am so tired "

thanx for the reply and info..

since i am hiv/hcv 25 years,  i already feel like you. half a person at best.

waiting for interferon free treatment but not sure if i can wait any longer. wonder if i can do this instead? Sofo/Sime/rbv ?

Sofosbuvir (400 mg once daily) plus simeprevir (150 mg once daily), with or without weight-based RBV (1000 mg [75 kg] daily) for 12 weeks is recommended for treatment-naive and prior PEG/RBV relapser HIV/HCV-coinfected patients with genotype 1 infection. Simeprevir should only be used with antiretroviral drugs with which it does not have significant interactions: raltegravir, rilpivirine, maraviroc, enfuvirtide, tenofovir, emtricitabine, lamivudine, and abacavir.

Rating: Class IIa Level C

[gibsongal]

i was wondering if one of the ADD stimulants would help the fatigue.

I did try ritialn for about 8 months, helped focus, i was scatterbrained, forgetful,fatigue almost car accidents, falling asleep at the wheel.. but for me could still fall asleep right after taking it!

quality of life is so important. this daily suffering with pain and fatigue is really hard on people. heck they give aderall to kids!  i asked and doc he said no..trying to get something like that from the doc . with serious disease going on s really hard. what is up with that? if i only have maybe 10 years of life left at least let me have some energy to live it.
! they try to give me antidepressants and i have tried about 4 in the past and just get more tired and dumb and numb feeling.

idk

cappuccino anyone.?

[Frank J. Perrotta]

Hey dontworry, that link defining post-interferon from melanoma.org didn't load correctly and when I went to the site and searched nothing came up. If medhelp doesn't allow for it to link correctly maybe you can send it to me in a message. thanks.

gibsongal, I know that otterwatcher will strongly disagree with me but Vyvanse (Ritalin gave me horrid dreams, didn't help me stay awake!) has been a miracle drug for me! I have no side effects at all. I get at least 5 or 6 hours of great active hours, can rest easily, nap for an hour, get up and have a few more hours then sleep easily for the nite.

Stress does cause the chronic fatigue to break out even worse and the Vyvanse won't help much when the fatigue hits hard! Without the Vyv I would be sleeping 30 hours, waking up to eat a bowl of cereal then back to bed.

Things are not perfect with the Vyv but at least I don't have bills pilling up, the house is a lot cleaner/neater and my life is organized...

btw, I do love my espresso/cappuccino! After moving back to PA to help my parents I still order my beans from this small shop in San Fran! Doesn't take the place of my Vyv! lol

[RickVaug]

I was put on Ritalin also ----- made me wide awake but did zero for fatigue

I have been on 6 different anti-depressants and they all made me worse --- Last psych Doc finally realized that the fatigue was what was making me depressed and that the drugs wouldn't help

http://livlong.ca/349/rebalancing-nerotransmitters-the-dangers-of-head-meds

interesting article ---- There is so much information on the internet ---- it's just figuring out what is truth and just how much

http://www.interferon.ws/Interferon_Harmful_to_The_Brain.htm

Here is another

The new treatments are supposed to be more effective with less side effects ----- Hopefully one day we will all be back to a life we once knew

[otterwatcher]

Nope I don't disagree with you at all! If Vyanse works for you and makes your life more bearable then go for it! I don't think our NHS would run to prescribing them here,it's hard enough to get the pain relief you need! It usually takes 3 weeks to get a 10minute appointment with a GP and takes about 9months to see a consultant...anti depressants are handed out too readily.

[dontworry_behappy1]

I check the address to make sure it worked.  It's not Melanoma.com.
It's the "American Melanoma Foundation"

www.melanoma.org/...post-interferon

[dontworry_behappy1]

sorry ...geez

"Melanoma Research Foundation"

[otterwatcher]

in answer to your other question,I don't think I had a particularly hard time during treatment,not that it was easy either I hasten to add but no major events.  I was genotype 3a so only did 24weeks and was fortunate to attain SVR but unfortunate to end up with Post Interferon Syndrome 3 months post.
Would like to make it easier for others to get diagnosed or at least recognise that they're not going mad, it was the drugs after all.

[gibsongal]

thanx for the info.
Frank..i am going t talk with the dr again. he insists i am depressed. yes because i have no energy. chicken or the egg?
i was a really really active person. had so many hobbies. hiked, fished.garden. i lived..
then it all stopped suddenly..pain & fatigue..

.and i also get really good beans and grind them and make a strong jolt !

i don't have energy to go out, shop or cook..progresso soup, cereal pb and chocolate milk are my friends. I used to be a really good cook. made my own bread etc would can and preserve the summer veggies, make jam and salsa.... not any more.

i have lost weight..too tired to cook and clean up.
paper plates and cups help. and hubby put in  a dishwasher and a jetted  tub! that has helped so much..

i am eating more frozen dinners, i hate them.. and frustrated that i can't get a handle on the house.. it is depressing..all my hobbies sit un attended. if the fatigue would go away i would be doing more and living. i am not clinically depressed. when i have energy i am fine..

i hope if i can clear the HCV i will bounce back..
but until then ..
i feel it is not fair that doc's will not help people with pain or fatigue when a person has really serious disease..

It took me almost 6 months to get pain treatment i cried and cried with pain. never had pain in my life..
then the script was so limited, (1 pill a day!) i suffered all day in pain and waited to take the one pill in the late afternoon so i could make diner..and not be a crying mess when hubby got home from work..

finally i switched doc's. he found a good pain treatment and it is small doses and the relief has saved my life.

i know they worry about addiction, but as i said, if someone has only a few years left to enjoy the wonders of life and family….
quality of life ….

i don't know why i share all this with strangers…i guess i feel alone and isolated because i can't get my a#$ out of the house.!

some of the people here are very nice. educated and helpful.
thank you all..good luck to you and your treatment and finding ways to deal with side effects and find peace and happiness in trying times.

[otterwatcher]

I'm very glad you've found a better doctor and now have some pain relief-now what are they gonna do about this overwhelming fatigue? I agree that you're not depressed but the situation you're in is Depressing. Good luck with finding some relief-all of us Post Interferon sufferers know exactly how it is,you are no longer alone xxx

[Frank J. Perrotta]

I had such a great Psychiatrist. He called my mental state "Situational Depression"! Which I thought fit it perfectly.

If I didn't have all this PIS to deal with I wouldn't be depressed... Actually I am sooooo over the depression. I am dealing very well with it now. I have PIS and keep busy, trying not to dwell on it.

It is crazy late now, we have had the worse, coldest March in history and that situation had caused SOMETHING UNMENTIONABLE! lol

another good night all...f

[robininmd]

I was treated in 1999 with interferon and ribaviron combo and am in the same situation as you.. extremely tired all the time.. feeling like there MUST be something wrong with me... this can't possibly be normal.  But time and time again, my bloodwork comes back normal.  Please let me know if anyone has an answer to the severe fatigue problem.  It is debilitating.

[Dee1956]

Hello! You have come to a good place, lots of compassionate helpful people, if you go to the top of the page and click on post a question others will pop in.  WOW! 1999? That was when you had to inject quite a bit of interferon.  I am so sorry for the problems you are having.  If you can post a question, others can tell you what they have tried to make them feel better.  I started with NADH for fatigue brain fog, then probiotics, calcium magnesium for pain,

I recently found that my sugar was too high so I am taking Alpha Lipoic Acid to lower my sugar levels which I found out it a very good antioxidant for the liver.

[marcollee]

My husband was treated for Hep C, 24 weeks interferon and ribavirin. Reached SVR. Treatment finished at end of February 2014. Went through hell with him whilst on treatment, and took a long time for things to get get back to some normality but now we seem to be going backwards. He says he is now over the treatment but I don't think so. He turns really horrible quickly, very much into himself. What he doesn't see is that these episodes are like the bad times on treatment, even his face has "that look". It may not last as long or perhaps be as severe, but not nice all the same. He was not like this before treatment. He is permanently tired, sleeps ok in bed and on the settee!!! On a purely selfish note, I am finding this harder and harder to live with and over the last year I have had many miserable days and I mean many. When asked recently by a health professional how is he now, he just says he is all over it now and if I mention the way he is, he says it is nothing to do with the treatment.

Has anyone else experienced this and any advise how to deal with it, taking into account his denial.

Thanks

[otterwatcher]

maybe you could talk to his dr about your concerns? I know I wasn't very forthcoming about the problems I had during treatment and men can find it harder than us to admit something is wrong healthwise. I hope he manages to open up- he must know he's not the same as he was pre treatment too.

[scottie24]

I became incredibly sick after treatment, but did not really realize how sick i was first year or two.  Also, inflammatory component to post-INF illness can, i think, cause worsening damage to body (including brain) as time goes on.  

[YOURPHOTOMAN]

8 years ago I found out I  had hep C. The treatment was a nightmare. It took 2 years of treatment with Interferon to clear the virus, 104 shots!!!!
To this day I suffer from depression from mild to severe. I need help so badly. It's so hard at times to deal with this
Marv
aka
Yourphotoman

[Bruin1903]

Rick.... I wondered how you were getting along.....I was fortunate to clear the Virus but the ongoing side effects, 14 Months later, are awful.
Am essentially incapacitated. Do hope you are doing better.
Is there anything out there that can help ?

[Bruin1903]

Am coming very late in this thread but it has taken me a year to work out
what was happening. Your experience same as mine, 3a,6 months and not
a traumatic time during treatment. Grateful for you sharing your experience as it has helped me.

[otterwatcher]

glad you found it helpful.xxx

[Dee1956]

Hey everyone, I don't know if this will help but I have seen a couple of people on here post about taking Cerefolin NAC to help with brain fog.  It is a food grade (multivitamin) prescription.  I am not familiar with this kind of prescription but it has been given to people off label to help them post interferon.  As Frank has stated the Mayo clinic recognizes Post Interferon Syndrome.
As I am searching I see it is a nutritional supplement that is by prescription to ensure a doctor is monitoring you vs it being an over the counter product.
Anyway...I have found people who are taking this to help with their thyroid and and also aches and pains.  As I find more I will share more, Just posting here in case it might help someone.
Take Care, Dee