Aa
Post Interferon Syndrome
I'm 54 and SVR after 3 treatments starting from 1993, 1994 then Peg & Ribarivin 2003. To say it was a roller coaster ride to hell is an understatement.
I hold strongly that I have Post Syndrome...I have intermittent fatigue after being active, takes me at least 2 days of resting to recover from any strenuous activity, and I mean flat out and sleeping, then I can have periods of insomnia which I never had before. I have had a major shoulder op due to rotar cuff deterioration, carpal tunnel release right hand, and looking at the left soon. Left knee cartilage repair, now due to have my right one done. I have aches in my joints which are random, clumsy as well.
My brain feels like sludge, some days my thought processes are a joke. I forget things like appointments, leave pans on the stove, unable to concentrate, get irritable if the environment is too noisy and crowded. I have depression and get anxious if I feel stressed and that in itself makes me feel unable to cope and make a decision.
I have coped with this by managing my time and environment which basically means, I can't work, I avoid any situations that would provoke stress or over stimulate me. This is not what I was like before, I was outgoing, worked and had a great social life. I have changed and often feel dead inside.
What has this drug regime done to me really? Yes, the hep c is undetectable but I can never donate blood or major organs (even tho I'm cured...joke!) tho I have been reliably informed the little bugger hides away in the lymph somewhere.
I read on here others that have similar symptoms and I wonder if we are a part of the treatment that pharmaceutically companies ignore due to profits from such a global problem. As time goes on more and more people express long term health and mental changes. I'm glad to be SVR but honestly...it has curbed my life and made me feel old no matter what I try to redress it. My GP is great and she agrees that immunologically there is probably changes and I was warned in 1993 that any existing conditions will worsen...so what did they know then?
I am a qualified nurse but not practicing now so any medical information or research that you know of would be of great help to me on my quest.
I would be so happy to hear from others as I would like to correlate the evidence somehow and also share and support.
best to all
Alys.
I hold strongly that I have Post Syndrome...I have intermittent fatigue after being active, takes me at least 2 days of resting to recover from any strenuous activity, and I mean flat out and sleeping, then I can have periods of insomnia which I never had before. I have had a major shoulder op due to rotar cuff deterioration, carpal tunnel release right hand, and looking at the left soon. Left knee cartilage repair, now due to have my right one done. I have aches in my joints which are random, clumsy as well.
My brain feels like sludge, some days my thought processes are a joke. I forget things like appointments, leave pans on the stove, unable to concentrate, get irritable if the environment is too noisy and crowded. I have depression and get anxious if I feel stressed and that in itself makes me feel unable to cope and make a decision.
I have coped with this by managing my time and environment which basically means, I can't work, I avoid any situations that would provoke stress or over stimulate me. This is not what I was like before, I was outgoing, worked and had a great social life. I have changed and often feel dead inside.
What has this drug regime done to me really? Yes, the hep c is undetectable but I can never donate blood or major organs (even tho I'm cured...joke!) tho I have been reliably informed the little bugger hides away in the lymph somewhere.
I read on here others that have similar symptoms and I wonder if we are a part of the treatment that pharmaceutically companies ignore due to profits from such a global problem. As time goes on more and more people express long term health and mental changes. I'm glad to be SVR but honestly...it has curbed my life and made me feel old no matter what I try to redress it. My GP is great and she agrees that immunologically there is probably changes and I was warned in 1993 that any existing conditions will worsen...so what did they know then?
I am a qualified nurse but not practicing now so any medical information or research that you know of would be of great help to me on my quest.
I would be so happy to hear from others as I would like to correlate the evidence somehow and also share and support.
best to all
Alys.
Best Answer
I have been through this for years. Did 20 months high dosage inf and then another year+ Peg/Riba. Could not move for years afterwards. Read a thread on this board about anti oxidant therapy. Some doctor in NM was using alpha lipoic acid,selenium and milk thistle along with B vitamins and D vitamins,whatever was needed according to labs. I read about it and figured it was better than doing nothing. Didn't think it would work but went to GNC and got a bottle of ALA and started doing 900 mgs a day. Within a week I started to move again so I added the other supplements. 400mg Selenium,900 milk thistle. Went to see the doctor and he added in low dose naltrexone which should straighten out your immune system and stop the symptoms. Best of luck.
hi im sorry to tell you but i took the treatment ten years ago and my symptoms of fatigue and depression brain fog the lot i am 52 from the uk it has ruined my life i used to be so active would have rather lived with the hep c x
i took the treatment in 2005 and ten years later i have brain fog aged abt 30years out of breath deppresed cant even think straight so so tired all the time the list goes on im always in bed i actually feel suicidal tried all sorts of meds i would rather have hep c i was ok when i had it i am a female 52 and feel abt 90 my life is over and no one understands unless they have been through it.
pub med re peripheral neuropathy and antiretroviral drugs http://www.ncbi.nlm.nih.gov/pubmed/11293802
I tx'd for almost a year w/ pegasys & 800mg. Ribavirin from either '06-'07 or '07-'08. (Bad brain fog--STILL!) Still UND
I worked each day on tx at an extremely physical job while HGB fell and started Procrit....but now- I am collecting SSD.
I am much worse now than on tx or pre for that matter...
Many of the same sx's as above.
I was so glad to see this forum (and recognize some names-Hi all) and especially know I'm not alone in this. I will read through all the posts on each thread.
I'm experiencing...
Muscle aches
Extreme fatigue
Joint aches (RA+)
Thyroid (Hypo)
Numb hands
Psoriasis has never gone away (Much better though)
I still have a sinus thing that has never gone away since tx and also a slight ringing in ears that has gotten a bit better. (Or I'm used to it)
The fatigue is SO CONSUMING!!
Anyway-I look forward to being here again and reading all the posts
Xen
I worked each day on tx at an extremely physical job while HGB fell and started Procrit....but now- I am collecting SSD.
I am much worse now than on tx or pre for that matter...
Many of the same sx's as above.
I was so glad to see this forum (and recognize some names-Hi all) and especially know I'm not alone in this. I will read through all the posts on each thread.
I'm experiencing...
Muscle aches
Extreme fatigue
Joint aches (RA+)
Thyroid (Hypo)
Numb hands
Psoriasis has never gone away (Much better though)
I still have a sinus thing that has never gone away since tx and also a slight ringing in ears that has gotten a bit better. (Or I'm used to it)
The fatigue is SO CONSUMING!!
Anyway-I look forward to being here again and reading all the posts
Xen
interferon and celiac's disease... http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0004-28032004000200012
Re Supplements that help. DHEA helps me a good deal and I've heard others report the same. In fact, it ought to be prescribed and free as part of aftercare, at least for men (there are some alleged dangers of masculinization for women so I don't know if it's worth the risk). In fact any "body-building" types of supplement are likely to help, eg alanine, and other amino-acids for energy eg carnitine, glutamine. Reishi mushroom powder (aka ganoderma) is also damn good (you must take it every day to gain any benefit. Buy it on ebay from Thailand)
Have an Answer?
You are reading content posted in the Hepatitis C: Post Treatment Issues Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
