Post Interferon Syndrome

[alysfreeman]

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.

[otterwatcher]

Very glad to hear you're feeling better,good food is always the best medicine xxx

[CantTakeAnymore1967]

When you say a low dose of nalrexone, what is a low dose? I'm asking because I completed tx march 2011 and am now convinced I have post interferon syndrome. I am worthless, can not think or function and feel like crap most days. My quality of life is zero. I was a RN but have lost my job and truthfully can not get it together enough to hold down a job. The loss of income has been devastating. Unfortunately, I turned down my Drs offer to "get me disability" while I was ON Treatment and have spent the last year not being able to even complete the SSD application as It is just too overwhelming. Although I am WORKING on it. While in tx I was prescribed high doses of oxycodone...15mg 46x/day in addition to 20 mg oxycontin sr 2x/day. At completion of interferon tx I chose to stop the pain meds as I was told I'd feel better within 3months and didnt want to be physically Dependant, which anyone taking those doses for over a yr inevitably becomes. So I opted to take suboxone rather than deal with the hell of detoxing. Ihave been u able to get off the suboxone, it is a combination med and contains 0.5mg of naloxone. Which is a low dose. My symptoms are getting worse NOT better. Every time I try and come off I feel horrible and keep being told its all in my head. Believe me it is not. I'm wondering if that is why I feel better on higher dosages because the naloxone dose is higher and maybe I just need a Rx for naloxone. There are days I just want to go back on the pain meds 1 because I'm in sooo much pain all the time and 2 I generally just felt all around better, even my mood and anxiety were less. I never suffered from sever MENTSL health issues or cognitive issues in the past and have no history of drug addiction. As I stated I chose suboxone rather than co tinue to take pain meds I was told I would no longer need. I also feel like ive lost 100 IQ points and have developed ADD. I'm just so tired all the time debilitatingly so. If I have an appt to attend I have to get up 4 hrs prior just to get myself able to shower n dress. Ive gained back 60# of the 25# I lost during g tx even tho I barely eat. The weight gain just keeps coming. My hair that fell out grew back a little but now is falling out again. I have muscle aches and joint pain so bad sometimes I can't move and feel like I'm 95 I'm only 46. Yes I'm still non detectable or cured but feel WORSE now than on treatment ( prob cuz the opiates "kept me going"). I'm sickmof being told I'm just depressed or have fibromyalgia because they can't find anything or worse treated like a drug seeker. My PCP and then rheumatologist put me on the oxys. I was tested positive for the gene ankylosing spondylitis as was not goi g to be allowed entry into investigational drug study and my rheum dr "cleared" me saying I was positive for gene but did not have the disease and bam during tx began getting gout attacks where I wld wake up screaming with locked joints and pain during the night and exacerbation of a disease she said I did not have...well now I do. These are just SOME of the symptoms that are worsening not improving as time goes by. NO one understands, even my husband thinks I'm just being lazy or psychosomatic and our relationship is being ruined by the resentment t he feels toward me over the loss of our income and financial ruin he pretty much blames me for.

[Xhrles]

A low dose is 3mg or 4.5 mg per day. This should normalize your immune system. More important for you is to get your energy back so can function.
Get some Alpha lipoic acid in 300 mg caps or tabs and take 2-3 per day. One in the morning and one in the evening and at mid day. My energy started to return after a week and I had been fatigued for 10 years at that point. You can get it at GNC or online. A good multi vitamin and a good B vitamin will also help. I am not familiar with suboxone but you need to know that naltrexone is used in higher doses for opiate addiction and will nullify the pain killing effect. Take it an hour or two before bedtime. google ldn for a website for more info. If you are on opiates then you might not want to use it. Do the ala and vitamins first. When the ala and vitamins got me on my feet a good friend took me to hot yoga. It's not for everyone but it has burned the fog out of my brain and gotten my weight down. If you can do it then you'll feel better about life. The endorphins help the immune system. I've spent a lot of time with nurses over the years and wish you the best. Write me direct if you need to.

[CantTakeAnymore1967]

I am no longer on pain meds. I have been off them since completing tx 3/11. I take a combination medication that has 0.5mg of naloxone in it, which obc is no where near 2-5mg. I will try your suggestions. I am just so relieved in a way to finally have an answer to "why do I feel like crap ALL the time. I questioned maybe the interferon but I dont know why I didnt Google it sooner???..Still, I dont hold much hope for the docs or SSD buying it...I mean it has literally ruined my life..and from the sounds of it, many others. Thank you again for the input.

[otterwatcher]

I read this on a CFS site and was shocked at the 30% figure quoted here- 'This was a study done by a hepatitis specialist who was treating hepatitis C with interferon," a protein that is part of the body's anti-viral response...."Seventy percent developed marked fatigue, and 30 percent developed chronic fatigue syndrome. So it was the interferon treatment that caused the CFS, not the actual virus circulating in their system....The CFS is the immune response from an infection." This finding is consistent with the idea that the symptoms of CFS could be precipitated by an immune system in overdrive.'

[otterwatcher]

this is about research into ME/CFS at king's college hospital-I was very surprised they expect 50% of patients to experience persistant post treartment fatigue.
apologies for the bad cut and paste!

this as a model of CFS, in our three-year project we want to:
1) assess a cohort (n=100) of patients throughout the IFN-alpha treatment and at 6 months after cessation of treatment, and identify the group who develop the persistent post-treatment fatigue (expected n=50 [ie half]);
HALF??? DID I READ THAT CORRECTLY???
2) validate this model, by comparing the clinical and biomarkers profiles in patients who experience persistent post-treatment fatigue, patients with CFS (n=50), and healthy controls (n=50);

3) identify the risk factors and the biomarkers trajectories (before and during IFN-alpha treatment) that identify those patients who will later experience persistent post-treatment fatigue.
Click to expand...Perhaps unsurprisingly given the study is based at Kings', they will be looking at psychological risk factors for fatigue too:


We will measure: fatigue, mood, and other CFS-like symptoms; medical and psychiatric history; childhood and recent stressors; social support; illness and treatment perceptions; physical fitness; quality of life; and occupational function. Moreover, we will measure blood biomarkers: serum cytokines; cortisol at awakening and during the day; and leukocytes gene expression. The project will build onto an existing pilot study in HCV patients, an established collaboration with Liver Units across London, and the research-led clinical service for CFS patients at King's College Hospital. "Thus, the project has great chances of success."
Click to expand...As before, this is not studying CFS directly but it could prove an intersting model, that would then need validating in CFS patients. One of the strengths of this approach is that they can collect prospective data on HCV patients pre-IFN-induced-fatige. However, the equivalent data for CFS patients can't be collected in the same way as they are already ill and fatigued so the comparison won't be direct.

[alysfreeman]

found this study..have emailed the main investigator waiting a reply.

[otterwatcher]

do let me know if you get a response!