I have read several posts about the positive experience from peg-ifn therapy (whether Pegasys or, more recently, Besremi) , as more of us MPN'ers are switching to these biologics. The research available is supportive wrt long-term survival and remission and I would like to give Pegasys or Besremi a shot. I was diagnosed with PV three years ago and am 60 yrs old.
My issue is that I suffered throughout 2020/21 from a granulomatous dermatitis (diagnosed as cutaneous sarcoidosis, an inflammatory condition ), which eventually, after cortisone therapy and going on HU, subsided. This means that in my case ifn is considered risky, as it may trigger a flare-up of granulomatous activity (n.b. this can affect also organs other than the skin , esp. lungs and also the heart).
Has anyone here been told they cannot take Pegasys or Besremi because of a similar situation or an autoimmune disease? Have you tried anyway?
So far, I have been on HU for almost a year and it is working well. But I am concerned about the future and my options. One course of action could be to go on IFN and also on hydroxychloroquine, a second line drug for sarcoidosis. I have not discussed this yet with my MPN haematologist, but the dermatologist suggested it .
Unfortunately this is the combination of two rare conditions, with very few cases known.
Thank you for any input you may have
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Aldebaran25
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I was diagnosed with p-vera in December 2020 and have been taking pegasys since March 2021. I am 69 years old. I also have autoimmune conditions, specifically in 2012 through 2014 I had Graves disease (hyperthyroid), Primary Scholerosing Cholangitis (liver duct system) and frozen shoulder. All of these I believe are interpreted as autoimmune conditions. When I started the pegasys, we talked about it as a potential problem, but my MPN doc thought we should go ahead anyway. Meanwhile we have monitored thyroid and liver through blood tests. I guess we thought the positives outweighed potential negatives and we would keep an eye out.
I have not seen any increase in my blood tests for thyroid or liver and havent noticed anything else that indicates autoimmune reaction in the approximate year of monitoring. It might be worth noting that pegasys is offspec for p-vera and the study data was for hepatitis I believe and I think for higher doses than is given for MPNs. I have mostly been on a dose of 90 mcg but recently upped it to 135 mcg and 90 mcg in alternate weeks as my hematocrit had risen (probably as my iron recovered). Mostly I've done ok with the pegasys although I get some side effects sometimes (fatigue, vision, satiety)
I would think this is a very individualized thing - it seems to be working out for me. The MPN centers that treat alot of people must have some experience with this.
It is tough to have two rare conditions that may in some ways affect each other and the treatment needs. I think you are correct that you would need to proceed with caution. I have one friend who does have an autoimmune condition who did decide to try PEG. She is using a very low dose. Unfortunately, I think the only way to find out is to try.
Hopefully you can review this with the MPN Specialist soon.
Thank you Steve and Hunter, I feel encouraged to experiment and give it a try. As we know this is all very individual but as long as the supervision is attentive then it feels safe to try. My reference department is Guy's Hospital in London, under the supervision of Prof Harrison. They certainly have a lot of MPN patients but apparently no one else with sarcoidosis. My next appointment is very soon: time to discuss! Good luck with your treatment, hopefully one day we will all share our remission experiences!
ET JAK2. I have been on a low dose of Peg (45MCG) every other week for about 7 months. I also have psoriasis, a known autoimmune disease. My hematologist (an MPN specialist) and I discussed the possibility of Peg acerbating the psoriasis (which up until them had been very mild) but he did not believe it would be a problem at a low dose. However, shortly after initiating Peg my psoriasis did flare up. I decided to continue with the Peg at a low dose despite this and it has been lowering my platelets (from around 800 to 488) at the last test and I feel better in general with no other side effects. I am continuing to see a dermatologist to treat the psoriasis and am using UV light treatment which is keeping the psoriasis under control. It is a balancing act to be sure. I am willing to do this because I believe that Peg has the best chance of keeping the ET from progressing. Also, my doctor does not want to use HU because of my previous treatment with chemotherapy for another cancer.
I am considering trying Besremi now. I too have auto immune/inflammatory disease that I am already on a separate biologic for. I discussed this with my MPN doctor and we would begin on lowest dose., and monitor. Wishing you the best!
Just a quick up-date on my post. Had the visit with the MPN consultant today and came out buzzing! A team member I had not previously met and he was all for going on Pegasys! Yes!! Besremi is not yet available on the UK NHS, so we start with Pegasys and eventually transfer. He corrected me on my former understanding of the situation. He does not consider cutaneous sarcoid a contraindication and already has other patients with autoimmune diseases on Peg (plus other drugs when necessary). In his experience about 10% of MPN patients have an autoimmune condition. The plan is to start in September as I have some travelling to do before then. Very excited with this news.
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