Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal.
I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving to Ruxolitinib and stopping the Peg, which I've been taking for 9 months now and doesn't appear to be effective. I've read up the info on Ruxolitinib and am a bit alarmed at the number of possible side effects. I already have low haemo and suffer from tiredness, muscle aches and breathlessness. I'm anaemic. Would this make it worse?
I feel anxious about making the decision to change drugs. Can anybody share their experiences of this drug with me - whether you're tolerating it well or not, or any other useful info? Many thanks to all.
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Sivasi
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Switching to a JAK inhibitor given what you describe seems like s reasonable thing to try. I am wondering if you discussed momelotinib with your hematologist since it is an indication for MF with anemia. Suggest ensuring that your review all of your options with a MPN Specialist. Getting a second opinion on a major decision can be very reassuring,
I recently progressed to MF from PV. I've been on ruxolitinib since 2019 and don't have any side effects from it. After progression my dose was increased to 15mg in the morning and 15mg in the evening,along with 1 iron tablet every other day to help keep the hb from dropping too much. Hope this helps.
Hi Sivasi, I take Rux for PV and yes all the symptoms you mention did worsen, however, it did stop pruritus which was by far my biggest problem. However, the dosage was tweaked a few times and I am now fairly stable, platelets in the 400s, all other bloods low but I am leading a reasonably active life. I can still walk about 4 miles but slowly, need to rest going up our many garden steps, and housework has been quartered. I manage quite well if I can take my time with things. Hunter's suggestion re Momelotinib sounds good, No good for me because I think it is not an option for PV and the pruritus would probably return.Good luck
I switched to Rux from IFN for PV. On side effects, both have plenty with the rare worst case ones being more severe on IFN. Rux for me has been milder than IFN was.
One useful preparation you can do is get vaxed for Shingles if you've not already done that. Rux has increased risk of shingles. Also take care on sun exposure esp if you're at risk for skin cancer. A top side effect you would watch for with MF is further anemia as you have also found.
In general Rux is well tolerated based on the studies and members' comments. In PV weight gain is another common side on Rux, less so with MF in a report I just read.
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For momelotinib, it was approved in UK just a couple months ago. So you should be able to access it. Both momelotinib and Rux are similar meds, being Jak inhibitors. But from
"Momelotinib for myelofibrosis: our 14 years of experience with 100 clinical trial patients and recent FDA approval"
it suggests momelot has more sides than Rux. There is also this comment: "indiscriminate use in anemic patients with MF who are otherwise not compromised by marked splenomegaly or constitutional symptoms is discouraged since safer and less expensive alternative therapy might be available for such patients."
Your Dr may understand this consideration best.
Another side with Momelot has been peripheral neuropathy, surprisingly common in this report. Peripheral neuropathy is not a typical Rux risk.
"(In phase 1/2) 44% (of momelot) developed treatment-emergent peripheral neuropathy (primarily grade 1, but not reversible in most patients) ... compared with 10–11% of momelotinib-treated patients in the phase 3 SIMPLIFY trials .... Peripheral neuropathy was not observed in the clinical trials of ruxolitinib in MF"
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I was not aware of these trade offs for Momelot till looking just now.
Hi, i started Ruxolitinib one month ago, i have JAK2 and was told PV and MF my spleen was enlarged. I felt exactly the same the side effects sound horrific, i have had no side effects in the first month and know of people on it who say they have never felt so good. Its a slow acting drug so im waiting to see if my spleen shrinks but already my joint pain is better and i no longer take pain killers for it regularly. Good luck if you do try it
hi Sivasi, I wonder if my experience would be helpful to you.
I also was diagnosed ET, 8 years ago. I was on hydroxy for five years, then Pegasys for 18 months. I’m type one Calr, apparently Pegasys doesn’t work so well for this group.
My haemoglobin was going down, the consultant insisted on BMB at that point which then showed that I had MF Level 2, tho spleen normal.
He declared that I had now progressed to MF and prescribed Rux.
I read up about it and saw that it would lower my Hb further, so refused it and was put on EPO for two months which brought my Hb back up to normal.
I felt a lot better. But platelets were going up again, so I’ve been back on hydroxy at a lower dose than before, my platelets are gradually creeping up.
It’s since been suggested to me by a different consultant that I might have been MF level two the whole time, without an initial BMB there’s no knowing, and the treatment wouldn’t have been any different.
I’m hoping that one of the new treatments coming through or trials will be suitable for me.
hi—I’ve been on Jakafi maybe 5 years or more for PV. I was on hydroxy before that but my itching was out of control, even with Atarax and 2x week light treatment. I love Jakafi for getting rid of pruritis, mostly. I take Atarax only in summer. Anemia is my only side effect and I’m trying to counteract it with diet (oysters, nuts, green vegetables) as I don’t eat meat. As an American, I was paying thousands of dollars for it but new legislation has helped a lot. This year the rx cap for Medicare is about $3500 and next year it will be $2000. I’m lucky I could afford Jakafi after I started on Medicare. Before that, private insurance required only a $20 co-pay. I walk at least 4 miles a day, do an exercise class 2x week. I’m pretty energetic. I’m 68, female.
I am post ET MF, I’ve been taking Rux since November, fortunately no side effects. I also have two EPO injections a week. I am anaemic, I had a couple of transfusions when I first went on it but none since. My haemoglobin has to be above 80, still low but liveable with. Other blood counts fine. I had the shingles jab and was told to keep up with the covid vaccines.
Hi, I’ve been on Ruxo for 6 months and have had no adverse side effects. The benefits have been spleen size reduction (20cm @ largest to 3cm measured last week), itching (Pruritus) has all but stopped and no more night sweats.
Difficult to quantify tiredness as am slightly in the afternoons, but with age and regular exercise, this could be seen as normal.
I am also slightly anemic but regular blood tests are showing no issues.
There are side effects shown in the accompanying leaflets with all drugs, but that is because we are all different but in the main, the benefits far outweigh the possible side effects.
Try to see the positives and wish you all the best in your journey.
Hi. I’d say , if you are offered it, give rux a go. I too got anaemic and fatigued on rux - at the moment am using EPO injections again to maintain Hb. I’ve also had occasional blood transfusions. Rux is an immune supressant, and I’ve recently picked up a sinus infection thats hard to clear.
you have had lots of good replies already. If you read any of the list of “possible” that’s possible not definitive side effects of any of the drugs we take (including aspirin) it’s enough to scare anyone from taking them. Rux is generally very well tolerated.
First thing is I wonder if your doc is giving up too early on Peg, some find it useful for holding MF where it is, 9 months isn’t long and a dose increase maybe a idea.
Some do well on the combo of Rux and Peg, it also means you need less of each drug.
Most going on Rux for MF can feel a lot better on it, I note you have anaemia, some find that Rux can lower Hgb etc initially but that it can rise again later, they can also give you various meds to try to raise Hgb if it stays low.
Momelotinib appears to help for anaemia but some report more side effects inc gastro.
If going on Rux , as EPguy suggested getting the Shingrix vaccine is a good idea as something like 6% on Rux get shingles (I did and it’s not fun).
As usual the best way forward is to discuss everything with a good MPN expert if you can.
Thanks so much, Ainslie, to you and everybody, for all the good advice. I've already booked my shingles vac for this afternoon. Will top up on my Covid jab as well.
Sivasi, so sorry to hear your progression. Thoughts and prayers to you. Best of Luck in your treatment. I am hoping this helps slow progression and provides you some relief. I am so glad you are in this group, hoping it helps you in strength and peace.
I was diagnosed with post ET MF in 2019. I became pre transplant at the beginning of 2023 while on hydroxyurea. I was switched to Jakafi last June. The first month was difficult but after that nearly all my symptoms improved, including my energy levels, night sweats, breathing issues, and spleen. by September, my transplant doctor told me I could hold off on the procedure. I take Aranesp injections to keep my hemoglobin levels up.
I have PV, diagnosed in 2015 at age 71. After more than five years on HU, with diminishing effectiveness and serious skin reactions, I switched to Jakafi in August 2022. It took a few months to find the appropriate dose for me, but once that was determined, Jakafi has worked very well for me; my blood count numbers have been stable for more than a year now. Side effects are relatively minor and manageable.
I just started Ruxolitinib a month ago and I feel better than I have in decades! Truly, the only thing I've noticed is that I'm sleeping through the night and having great dreams, I have more energy, no day-long fatigue, no itching, greater focus and ability to concentrate (so I'm reading again!), and I feel like I've had a mood boost even though I'm a happy person most every day. I just went for blood work last week and my platelets were in the normal range for the first time in years. I was on HU before this but I quit after 2 years due to increasing symptoms (mostly brain fog, concentration, confusion etc.). I'm hoping my other numbers stay stable so I can continue to feel good and remain on this drug. For now, it feels like a mini miracle. Best of luck to you!
That's really interesting. I had been on HU for 5 years and could not sleep more than 1/2 hour at a time - it was exhausting. From day one of taking Rux I was sleeping through the night - I have been on it now for 6 weeks so still early days. Being able to sleep was amazing! However, I am sleeping a little too well now and keep nodding off during the evenings. I also feel more physically tired when trying to do gardening or housework which is not so good.
I have been on Ruxolitinib for 3 years or more for PV with JAK2 and so far it is working. The dosage has been increased and decreased. My side affects include fatigue, anemia (which I got some iron infusions), and weight gain. It is an immune suppressant as I have been in the hospital twice (first time pneumonia and blood clots) and last year for the flu. Guess you have to consider the pros and the cons.
I've been on low dose rux since 2019 and then switched to higher dose 20mg bd for the last 2 years since my PV progressed to post PV MF. Initially it did great at reducing my spleen size whereas now I think it's just keeping the spleen stable as it's still enlarged. Generally I felt much better on it than my original hydroxycarbamide and it was definitely better at getting rid of the aquagenic pruritis etc.
The only side effects I've had are some weight gain and an increase in cholesterol levels as it impacts on your metabolism and leptin levels. I also have to take Epo injections every 1-2weeks to help with the anaemia and keep my haemoglobin up. The Epo is often used in chronic renal failure patients too and is generally very well tolerated.
If anaemia is an issue for you they may offer the newer momelotinib but as per some of the replies above that may have other side effects to the Rux.
MY MPN journey is now 30+ years long, and I have gone from originally starting on Anagrelide when my Platelets went over 1,000,000 (I was doing monthly Phlebotomies prior to meds) to Hydroxyurea to Jakafi to now Inrebic. I did very well on Jakafi for the most part, except for increased itching after bathing and increased incidents of Squamous Cell skin caners. Given Jakafi was known to increase that type of skin cancer incidents, and I have a lot of skin canecr issues, my team decided to move me to Inrebic. The jury is still out on whether the skin canecrs are decreasing, but I will say the itching went away and Spleen size control is solid. I am not suggesting to avoid Jakafi, but if you suffer from any form of skin cancers, I would proceed with caution (meaning seeking counsel on other options).
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