hi
I just wanted to warn patients who might be experiencing a SEVERE reaction to interferon to speak to their haematologist as soon as possible for advice.
It can cause autoimmune diseases ranging from rheumatoid arthritis to lupus.
Rare but it happens.
A severe reaction has caused gluten intolerance for me.
Interferon is a great drug - if it suits you.
Louise
Oh heck Lou, I'm sorry to hear of your severe reaction. What happened in your case? I hope you are recovering now you have stopped taking interferon?
I m fine thanks. Now on Rux.
I don’t want to frighten anyone into either not taking interferon or stop taking it - but just to be aware if they have multiple side effects and feel really rotten. ( I couldn’t walk to the loo without hanging on to something!!) am now fine but am quite severely gluten intolerant. Bit of a pain but can live with that!
I recall you had a bad reaction. It's good to know you recovered from the most extreme effects. For those not familiar with my interest here check my post "Last Dose".
I agree fright is not warranted, but attention is. I also agree, IFN can do great stuff, my counts were flawless VAF down etc and the infrequent dosing is great.
You're referring to this black box warning on "rare but happens". The good news on RA and Lupus- both are well known and usually have decent treatments. Lupus is on its way to being likely largely curable in one session. (I can provide the trials for those interested)
But IFN has a particular, still rare, propensity to Sjogren's, the common (similar prevalence to Lupus) and Evil autoimmune life wrecker few know of and which has no treatments. This absence is about to change fortunately, but better not to "catch" it in the first place.
Loubprv is right, watch for any signs. My last chance warnings were not even severe- sudden but vague extra fatigue. Then a single, even reduced, IFN dose can tip it over .
Yes your right about the side effects I've had to stop due to neuropathy.I also have auto immune issues namely aero neg arthritis
Heavens poor you. Neuropathy is horrid. I had peripheral neuropathy as a result of Nitrofurantoin. GPS tried to pass it off as Erithromelalgia silly beggars!
Hi,
Can you be more specific about the neuropathy, where in your body?
Thanks
Hands and feet were effected.Hands have gone back to normal, but still getting problems withballs of feet and toes( it like you can't feel the floor for me not so much the pins and needles)If I had been seeing Guys at the time they have said it wouldn't have prescribed because of the AI established issues
to Spanelmad
I understand the can't feel the floor. I've had the sensation of a 6 inch block under my foot, so real that I looked for it. One of the many gifts of Sjogren.
Interesting that the Euro label says "Do not use Besremi: if you have or had an autoimmune disease"... The US label is similar if less specific.
Anyway I never had any A-I prior to the Vax-Bes.
With the feet it's not just the toes?
Interesting that Guys would not recommend inteferon.
Thanks
to Jamesxyz
The Bes labels advise against use to those with "serious" A-I history. Neuropathies are often a subset of A-Is or one symptom among others within an A-I.
So if no neuropathy history, but some after taking IFN,
What would that suggest?
James, no one on this site is a doctor!
May I suggest that you consult your haematologist……?
Loubprv is right re the medical advice. But we can offer our opinions and thoughts on what to ask our Drs. In my opinion we are collecting real experience (we are an informal phase 4 trial) that can help each other, ours Drs, FDA, and the drug Cos. In particular these rare IFN outcomes were not caught on the Bes trials, and my MPN specialist had no 1st hand info, so our experience is important. Same on my flu vax outcome, rare and not caught on its respective trials.
With all those qualifiers, in my opinion if one has a new possibly A-I connected event while on IFN, it requires an urgent call to your Dr. Don't send an online mssg like I did, call the office.
I agree with your warning of Pegasys. After 3 and a half years I had to recently stop Pegasys due to sudden psychotic onset. Terrible anxiety! Adrenaline flying constantly around the body. Made correlation with shoulder, neck ,head pain all due to Pegasys. Pain has gone. I cannot tell you how scared and out of control I have been in my mind. Still having problems. Thought I would answer your post as easier as I want to warn people too but can’t face doing my own post right now.
Please no downside or discouraging comments as I have to try and stay positive at the moment. Never had mental health problems before and have always been a strong person. My hope is that with the support groups and help I am given, I can get over this as soon as possible.
I relate to the mental health troubles, esp anxiety and wishing you calm waters. Mine is common for Sjogren pts, so it's more indirectly from the IFN.
That is surprising to have that happen after doing ok so long on the IFN. It is one of the known rare risks unfortunately. Good to know you have found supportive help.
Also quite good that the physical troubles have improved. I'm hoping for some of that, it's a big step to healing.
Thank you EPguy x
gosh how horrible you poor thing.
Suggest you speak to Maz about being referred to someone at guys who can help.
Louise x
Thank you . I might well do after my haematologist appointment next week
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