I read some of the posts here on a daily basis, but don't post very often -- mainly due to lack of time since I'm working full-time and trying to manage my various conditions. My bio provides the details. One day I hope to be able to participate more fully!
I currently manage my PV with an anti-coagulant and phlebotomies every 3-4 months. My platelets have been in the 700's for more than a year now. I've been contemplating for a while whether I should give Pegasys a try to see if lowering my platelet counts will improve how I feel on a daily basis. The main issues are fatigue, tingling sensations (particularly in arms), and Raynaud's. As well, I'm iron deficient with ferritin typically under 10. I'm reluctant to try hydroxyurea since I enjoy being outside and there is a history of skin cancer in my family. Also, I'm interested in the possibility of remission that Pegasys can offer.
Note that I have discussed this with my regular hematologist and an MPN specialist. They seem to be willing for me to try the Pegasys. I'm in Canada, but am fortunate to have private health insurance through work that would cover the cost.
I have a couple of questions that I'm hoping I can receive some feedback on:
(1) Has anyone with autoimmune issues been able to tolerate Pegasys (or another interferon) without any major issues? I'm asking this because I am dealing with some sort of autoimmune issue at the moment brought on by a Covid infection in spring 2022 (see my bio for details). I have also had hypothyroidism for decades but it seems to be well managed by medication.
(2) If I'm already fatigued, will Pegasys improve the fatigue or make it worse? I know this can be dependent on an individual, but just looking for some member experiences.
(3) If I try Pegasys and end up having intolerable side effects requiring me to discontinue its use, is there the potential for any long-lasting negative consequences?
Thank you for your time.
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It is of note that some of the symptoms you describe are consistent with iron-deficiency without anemia. These can include weakness, fatigue, reduced exercise performance, difficulty in concentrating, and poor work productivity, neurocognitive dysfunction including irritability, fibromyalgia syndrome, restless legs syndrome, symptom persistence in patients treated for hypothyroidism. ncbi.nlm.nih.gov/pmc/articl...
I was unable to tolerate hydroxyurea and it was ineffective. When I was treating PV with therapeutic phlebotomy the iron deficiency symptoms were worse than the PV symptoms. (reduced energy, concentration/memory reduced, cold intolerance, alopecia, reactive thrombocytosis PLT+200)This lead to my decision to start on Pegasys. I later switched to Besremi. I remain on a low dose and have achieved a complete hematologic response. My allele burden dropped from 38% to 9% in 18 months. I am hopeful for a molecular remission. My quality of life has improved significantly. I feel better now than I did 10 years ago.
We all respond differently to the treatment options. Some respond quite well to the interferons, but not all do.
In regards to your questions. 1) Cautions for Pegasys include autoimmune disorder and thyroid disease. epocrates.com/online/drugs/... 2) Pegasys can significantly improve fatigue when compared to the consequences of iron deficiency but can also have fatigue as an adverse effect. It certainly helped me. 3) While adverse effects would typically resolve with discontinuation, it is possible for there to be long-term consequences to IFNs. Some on the forum have commented on this.
Suggest reviewing all of your options with a MPN Specialist. Comparing Pegasys, hydroxyurea, ruxolitinib, and continuing with phlebotomy-only with case-specific expert guidance would be advisable.
Thanks for the feedback and well wishes, Hunter. Yes, I do agree that my iron deficiency without anemia is almost definitely related to some of my symptoms. I actually had an appointment with my rheumatologist this week and she doesn't have any concerns with me trying Pegasys given the nature of my autoimmune issues. However, I know that it is something that requires careful contemplation given some of the experiences relayed on this forum (ie. EPguy). My next appointment with the hematologist is in December, so I will be mulling over the options until then. I do know that I haven't felt like myself since 2019 and then got diagnosed with ET and then PV in 2020, so I'm thinking that if my blood counts can be addressed, maybe it will improve my quality of life.
Blue - there are a number of forum members who have direct experience with the interferons and autoimmune issues. While Peg has worked well for me, the three key areas of concern for my MPN specialist before I started taking it were:
1) Mental Health - wanted to make sure I did not have a history/struggle with depression
2) Autoimmune - inquired about autoimmune history and if were they well controlled
3) Liver - check liver panel numbers
The interferons can have negative impact on all the above so best to discuss in deep detail with your MPN specialist.
Thank you for outlining those 3 areas of concern, Solyesh. I actually had an appointment with my rheumatologist this past week and she doesn't have any concerns with me trying an interferon given the nature of my autoimmune issues. Both my long-standing hypothyroidism and post-covid autoimmune issues are currently well-controlled. I'll still need to mull things over -- I'm not in a big rush. Just looking for a better quality of life, as many of us are.
I have MS which I found out after I knew I had PV. Now MS is an odd autoimmune disease and responds to beta interferon. So I was able to start Besremi. It then caused hypothyroidism which I was already subclinically high anyways. I am now on thyroid medication and working on that which was likely to happen anyways. Despite the thyroid which can be managed and everyone was ok with that I have been doing great! This was a trade off which to me was worth it. My labs look good and it could possibly control my MS. I am an odd duck. The only one on this forum I know of like this. But I just wanted to point out somethings can be managed if the benefit outweighs it. And I know others with thyroid issues on this site on interferon and they just manage it. But just talk to your doctor. Good luck
Interesting note about your MS. Hopefully the interferon can help with that too. I have had hypothyroidism (Hashimoto's) for 30 years which is and has been well-controlled. I get fairly regular bloodwork for this and will need to make sure that my levels are closely monitored if I go the Pegasys route. I appreciate the feedback and am glad to hear you're doing great!
Do you have a full autoimmune blood panel? It's clear you do have a spectrum of autoimmune conditions. A virus or vaccine are known triggers of these conditions so it's quite possible Covid was one of yours.
It's good you're getting response with plaquenil, I'm intolerant of every thing I've tried so far, and Sjogren's is largely untreatable anyway.
1- Odds are you will tolerate PEG ok. But you'll want to ready to stop treatment asap if any autoimmune is increasing. Track all the immune symptoms and blood markers just as you do CBC's etc. The autoimmune effects may be just subtle signals not seen in CBC's CMPs (mine showed nothing) . My too-late signal was passing out and hitting my head after that last fateful dose.
2- Bes worked perfectly while I was on it, all blood counts looked like no MPN at all and the mutation went down nicely. But it did cause me malaise/fatigue while I was on it. I think my dose was too high. If you try IFN, my suggestion is to use the absolute smallest dose that holds the blood counts. This seems to becoming a more common approach.
3 -If you lose the autoimmune lottery then yes, the worst case is permanent damage. This risk is in the labels for PEG and Bes, (see image) and in me. But this severity is very rare esp if you stop IFN upon seeing the early signals. But once immune effects have reached "intolerable" it may be too late.
If you get any multiple vaccines while on PEG, there is not much guidance on the spacing of them other than "same day" or "not same day." From the little info I've seen, same day or more than 2 weeks is safest. My 1 week spacing was the worst option.
If you have access to Rux, it is not associated with these rare worst case immune reactions. I am on it now. Rux can also reduce the mutation as discussed in posts this year. But I did like the infrequent dosing of IFN.
Thank you for the reply, EPguy. Yes, I have followed your story and am so sorry to hear of the issues you've had to deal with.
I have had a full autoimmune panel at various times over the last few years. My ANA is always at a titre of 1:80 with a speckled pattern and all other markers are normal. I personally believe that Polymyalgia Rheumatica (PMR) is what was triggered in me by Covid; however, my rheumatologist doesn't agree because I had hand/wrist involvement. Otherwise, everything else is textbook PMR. I also follow the HU PMR forum and there are many on there with hand/wrist involvement but unfortunately it's not something that my rheumatologist is open to hearing about.
I appreciate all of the pointers you've provided based on your experience. From what I've read on this forum, it does sound like starting at 45mcg is a good starting dose and evaluating progress/symptoms when needing to increase is important. I'm not one to get many vaccines for various reasons, but when I do, I always make sure to spread them far apart.
Rux is something we've looked at too, but thinking of trying Pegasys first. That could change. As I said in an earlier reply, I'm not in a big rush and am taking my time weighing all of the options.
Wishing you all the best and am very appreciative of you taking the time to respond given everything you're dealing with.
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