Post Interferon Syndrome

@tubaplayer Welcome to Mayo Clinic Connect, a place to give and get support.

You said your husband has been unable to work due to illness for 15 years.

Is this due to Post Interferon Syndrome?

Yes. I do do not know what else we can do. He is getting worse and he is extremely fed up with feeling so bad.

@tubaplayer May I ask how many providers your husband has seen regarding this issue?

0h goodness it could be 40 to 50.

Thanks for the welcome. Where to start, brain fog, fatigue, flu like symptoms, upper respiratory problems, I would wake up feeling like I have the flu. I can't even get out of bed. 8 hours later I feel fine. I experience this 2-3 times a month. Various unexplainable pain. I have chills all the time. I have good days. I also have lupus and autoimmune deficiency as a result of the interferon

Does Mayo Clinic have specialist that work with Post Interferon ?

@tubaplayer 40-50 is a lot.

Members like @ldestella @bt56 @mar2a @seakay @timc272 @bulldogmama4 have experience discussing this topic and may be able to help.

May I ask if you had had a chance to read all of the previous posts on this discussion?

Regarding if Mayo Clinic has a Post Interferon specialist, the best way to find out if Mayo Clinic has an option for you is to go to the website and utilize the search functions.

I have linked the Mayo Clinic general website below.
- Mayo Clinic: https://www.mayoclinic.org/

May I ask if there is other key phrases or words that can also be used to search this topic?

I just found this website forum. I felt like I have been going in sane with my declining health and consulting with doctor after doctor that look at me like I am a hypochondriac. The fact that so many other souls have suffered after interferon therapy and clinical trials, there needs to be accountability for this. Has any class action lawsuits been started? My life has been ruined. Numerous surgeries to fuse soft bones in my feet, cognitive decline, many irreversible back and neck issues, personality changes, depression, anxiety, chronic myofascial pain, headaches, massive washed out feelings of fatigue, bone decline in my gums, blurry eyesight, electric shocks in my ear area, heart rythym problems, forgetting where I am when driving, osteopenia, gastric problems you name it. I began disability in June 2020. I was in a clinical trial for 12 months of daily ribovirin and interferon injections 3x a week. Started in July 1998 through July 1999. I have absolutely no quality of life, no joy or drive to persevere. I use to be a professional in the job world and have been reduced to a pathetic existence at 58. I lost my dream job due to poor performance and every job I tried after that. I can't deal with people at all, have rage and am always irritatable and anxious. I actually am relieved that it's not all in my head, thanks for listening and I look forward to more information and discussion.

So sorry to hear you feel so bad.
I do not understand why in 2020 there is no help.for this disease.

I recently said to my doctor that I'd be curious to find out how many people have committed suicide after having taken interferon/ribavarin. That is how bad I feel too.

I'll start from the top. Currently, I have a severe rash all over my head with scabs. My head itches so bad and it is very uncomfortable. And nothing I take helps it.

It took 10 years to see any wax return to my ears, after treatment. And then when it finally returned, I had terrible earaches, no kidding.

The eye doctor told me I had the worse case of dry eye she had ever seen.

It has been mentioned by more than one doctor that there is a good bbn possibility I have Sjorgren's caused from the medicine, but I have yet to get an official diagnosis because I am a charity case and no doctor wants to see me.

I have osteopenia from taking the medicine. I can prove that it was caused by the medicine.

I also have severe leg pain and my knees are now failing me, this was all caused from the medicine frying our bones. I can prove that too from the research I have done.

Did you know every few months everyone that was on the medicine should have had a bone density test?! They should have cut my dose in half, but did'nt. The more they prescribed the more money they made.

I wake up every day feeling awful. I have to urinate 30 times a day, it is as if my body can no longer regulate itself.

My knees need to be replaced from my bones being fried. I have pain every single day and chronic fatigue.

When I requested my records they were very nervous about it and did not want to give them to me. After see my blood labs at critical levels and doing further research only to discover that my dose should have been cut in half because it was frying my bones.

Just think of all the damage that medicine has wrought on our bodies starting with the brain which regulates everything. It damages the heart and every organ in your body.

I fight every day just to stay alive. I no longer trust doctors and go to naturopaths to try and feel some semblance of normalcy, but I know there is no going back to feeling good again.

It has been 10 years since I was treated for a year.

Make sure you collect all your own medical records so that you are prepared if there ever is a lawsuit as I have done.

Unfortunately, when the doctor told me I had the bones of a twenty year old just a couple years previous to being treated, those records no longer exist, but the doctor does and she will remember telling me that because I was 49 then.

I have proof that all my medical issues I am suffering with now WERE CAUSED FROM THE MEDICINE AND NOT AGING!