Happy New Year to all the members of this invaluable group! Does anyone have experience switching from Pegasys to Ruxolitinib? I am considering a switch in meds since my allele burden seems to be suddenly climbing after 3 successful years on Pegasys. Pegasys has been very good to me apart from developing hypothyroidism. It has kept my blood under control fairly well, and I have managed minimal side effects (after the initial startup). I have my semi-annual appt with MPN specialist in a few weeks and collecting my thoughts on next steps.
I am JAK2+ pre-fibrotic MF, 45 years old. My thyroid went out after about a year on Pegasys - not stoked about that but I will deal. I would love to be able to get thyroid up and running again if I discontinue Pegasys.
Also wondering if Besremi would be better suited for my sluggish thyroid. Does anyone know if Besremi is a little gentler on the thyroid?
Any input on your experiences would be greatly appreciated.
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Emmyroos
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I switched from Besremi to Rux because of a severe autoimmune event in the "Not thyroid" category. Otherwise Bes worked very well. With your known risk on PEG, Bes is unlikely to be different. Both carry similar thyroid toxicity or autoimmune warnings:
"Endocrine toxicity has occurred in patients receiving interferon alfa products, including BESREMi. These toxicities may include worsening hypothyroidism and hyperthyroidism" This label says over 11% of pts on Bes had thyroid toxicity (~4% hypothyroidism):
On the sudden increase in allele burden(AB), odds are Bes would not be different, both work via type 1 IFN-α. But it's not impossible your experience with Bes could be different.
Has your Dr said the thyroid condition is reversible? That could be a very good reason to try Rux.
My AB has continued down on Rux, while I have PV Dx.
Thank you EP. You bring up some really good points. I would assume Bes and Peg would have a similar risk profile but I guess still hopeful that Bes would be an improvement. A-I issues are definitely on my radar. They run in my family especially of those of the thyroid. I don't know if Peg caused my hypothyroid or if I was predetermined for it anyways... my guess - hypothyroid was coming for me but Peg got the ball rolling perhaps a little sooner.
I don't know yet is it is reversible... I currently do not have the thyroid antibodies that determine if it is Hashimotos, the A-I version of hypothyroid. Because of that I do hold out hope it is still reversible.
I am glad to hear your AB has continued to go down with Rux. Can I ask how well does Rux control your MPN symptoms?
Thank you for the response. Your input is much appreciated!
You note:"I don't know if Peg caused my hypothyroid or if I was predetermined for it anyways" It could be both of those, as the label says, IFN can exacerbate existing conditions, so an additive effect is possible.
If your thyroid condition might still be reversible, at least a pause of any IFN could provide an improved opportunity for such reversal. Those %'s in the label are "not rare" and mean these troubles are well documented.
Are there non-thyroid A-I's in your family history? These can be a particular concern.
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We see on the forum Rux is reducing AB nicely for some members. You can see my actual AB progress in the 1st reply of this thread:
My MPN Sx have never been severe, the sides of HU and IFN were more an issue. Now with my Sjogren's overwhelming any effect the MPN might present, it's hard to judge any symptom effect plus or minus from the Rux, since I've never had Rux without the Sjo. But at least I continue to not have some of the known PV Sx.
I know someone with PV who has taken Pegasys for 18 years and has no thyroid because it became cancerous before starting Pegasys so she had to have it removed roughly 20 years ago. She takes a thyroid replacement med of some kind - I forget the name.
Fortunately, thyroid meds have been an easy fix for myself up to this point. I remain hopeful I can recover some thyroid function if I change to Rux. I guess time will tell. Thank you for your input!
You have had some good answers already, Rux is easy to tolerate and doesn’t affect thyroid, Peg often affects thyroid but is quite easily corrected by taking thyroid meds.
If AB is rising then maybe it’s a time to consider change but that’s a discussion to have with a MPN expert ideally after a BMB.
Thank you Ainslie - I agree. If my AB is on the rise (regardless of thyroid issue), it could be time for a change up. I had a BMB about 4 years ago. I will ask my doctor how often she'd recommend one. Thank you for your response. It is appreciated!
Re getting a BMB, I’ve asked a few experts about how often we should get one, most will say if no changes in counts or symptoms etc then no need but if there are changes and it’s been a while since the last one then do one. Personally I’ve been getting one about every 5 years just to see where I am.
I have ET, JAK2 positive. I switched from Hydrea to Peg to Rux. Rux is working much better for me, both on platelets, and how I feel. Felt terrible on Hydrea, and Peg, and neither got my platelets down as much as Rux. Feel much better now, but there are always side effects to all drugs. Everybody is different in how they react, but I know you know that!
I am so glad to hear Rux is working well for you after already doing HU and Peg. I hope it keeps working for a long time!! Thanks for sharing your experience.
I have had PV since 2021, started on HU and then on Besremi for about 19 months until late last Fall. I have also been hypothyroid for over a decade and prior to PV. I was tolerating Besremi well when a sudden onset of severe hives appeared and became chronic. Besremi was suspended as soon as I reported the hives to my MPN specialist. At the same time as the hives my hypothyroid became worse and I had to increase the levothyroxine for the first time in years. Not sure which came first the hypothyroid or the hives.
Lots of testing was done and the conclusion was that this is an unusual outcome and likely an autoimmune response to Besremi. I am now taking large doses of antihistamines and montelukast and this mostly controls the itching and minimizes the breakouts. I am being moved to Rux which my MPN specialist and Allergist think may help resolve the hives. I don't start the Rux for another week so I can't comment on that. While on Besremi for almost 2 years, the HCT was beginning to be controlled, but my JAK2 test in December went up from 22 (3 years ago) to 32 now, a great disappointment.
We are all different and this is a complex disease where decisions can be hard choices. Thank goodness we have MPN specialists, researchers, this forum and each other as we work our way through our individual experiments. I'll be interested in your experience and others here regardless of the direction you take. I have learned so much from others here and plan to continue to report periodically on the good, the bad and the ugly. Best of luck!
Thank you so much for your sharing your experience. What disappointment to see the allele burden jump up like that! My last Jak2 was a surprise also since it had been on a very slow but steady decline and then suddenly a jump upwards.
The reaction you had to Besremi sounds concerning. I am so glad you have Rux to fall back on.
Thank you for input. It is much appreciated! Best of luck starting on Rux. I hope its wildly effective for you and it's a smooth transition.
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