I have been taking Pegasys for little less than a year at a fairly low dose. I had some warning signs of migraine (painful to move head) a few times, which I attributed to dehydration, but then had a vicious migraine for 2 days within 7 days of a Pegasys injection (45 mcg). I had never had a migraine before this. I lengthened the time between shots and had no subsequent problems. A few months later my hematologist wanted me to increase the dose to reduce platelet level, which was in the 700s. I stupidly dosed at a much higher level (about 80 mcg) and within 5 days had a bad migraine for 7 days, which is still continuing although I am recovering.
My migraine was severe and included sore hips and toe joints. Since I have suffered from psoriasis in the past, I believe I am at risk of autoimmune reaction to Pegasys. I know some of you have stopped Pegasys because of autoimmune risk, and I am wondering if anyone has experience they would be willing to share. All input is appreciated. Thanks so much.
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Smithjoa
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I have the most extreme experience in this area, you can see my posts since last year. This was on Besremi, triggered by a flu vaccine. I also was on for a little less than a year. It's the 1st two years where a bad reaction is most likely to show up.
Your reaction could be just normal IFN dose effects, but you're seeking our immune experiences. I also had mild psoriasis which got slightly worse on Bes. Maybe as you suggest that inclines one to deeper immune reactions.
IFNs have FDA black box warnings for irreversible autoimmune risk; this is the most severe risk level. Luckily it is rare.
My two top mistakes were agreeing to a larger dose than I should have, and taking that last (reduced) dose while I had warnings. I now have permanent and debilitating Sjogren's.
You are getting possible warnings. If it is autoimmune for most pts these are reversible if the IFN is reduced or stopped in time. Good news is you are recovering so a 2nd chance is on offer.
You should get a full rheum workup to check and track any markers. Examples include blood tests for (Rh, ANA, CRP , ESR, SS-a and a long list of others) In the meantime you should discuss with Dr whether to take a dose reduction or break from the PEG, while monitoring all the autoimmune conditions. Your blood counts should hold for a while you keep track of all. (mine did for three months)
I did ask my neuro about that when my vaccine reaction was all neuro troubles. Sjogren's can have bad neuro issues. But my neuro condition slowly improved so he felt not worth the risk. Most avail Sjo treatments address nerve pain and the like.
I now know Sjo can present at 1st with neuro and progress to its other evil doings from there. For example I now apparently have COPD, usually seen in smokers, (I'm never smoker) but also common in Sjo.
So far I've been intolerant of every conventional, and marginal, treatment we've tried.
Pegasys is known to exacerbate autoimmune problems. In my case it pushed me toward Celiac disease. Fortunately, I knew what it was and caught it before that happened. I completely stopped eating gluten. It affected dairy a bit, too, so for awhile I stopped dairy. I've been off all the interferons for a few months (now on Jakafi) and am able to consume a little dairy, but gluten may be permanent.
That's good you stopped in time. I see in your posts one reason you stopped was lack of efficacy for your spleen. Good timing on both counts.
You're right about the known effect, it's actually in the most severe level black box warning on the label, image here.
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In at least one PEG study I've seen, 4-5% of pts stopped therapy bec of immune troubles. Considering how common it is and how severe this can be Dr and pts should be way more vigilant. I think regular immune panels should be part of IFN therapy just as liver counts are. Also the label should have more guidance on immune symptoms to watch for. The label makes it seem that there is plenty of time to act, I can say that's not always the case. MPN or Haem docs won't normally help here.
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My final warning was very suddenly increased malaise and fatigue one night, not specific to any autoimmune. But the preceding neuro vax reaction in hindsight was a mssg to "withdraw therapy" per the label.
If I had seen replies of the sort I have been doing lately I would have stopped the IFN in time.
Migraine is doseage related. On 45 weekly I had migraines. MPN advised 30 monthly & migraines went . Now 45 monthly no side effects & platelets continue to reduce.
I also drink plenty of water daily & walk a lot . Peg has been good since adjusting doseage it’s not a quick fix to reduce platelets I have taken a year of adjusting doseage to reach 340 currently . Julia 👍
I started on a low dose of pegasys of 0.25 once every two weeks and gradually increased the dose slowly over nine months to 0.50. After a month or two on that dose I got a headache several days after injecting for two months in a row. I then decided to drop the dose back down to 0.45 and I have had no trouble since then. One thing I definitely recommend is increasing and decreasing doses slowly so that we can avoid extreme reactions. I wish you the very best of luck, and the best of health.
Hi you are most unfortunate. So sorry it doesn’t seem to agree with you. Have you considered peg with other medication? I know it can be done. That way you can stay on a low dose of it. It’s given me my life back
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