I'm struggling with heavy anaemia and very very low platelets after four months of Ruxolitinib. It's not pleasant at all, and I need blood transfusions every two weeks or so. There is a danger of my ferritin levels getting too high as well.
I gather this happens a lot. I understand my Hgb levels might plateau and then improve after three months or so. But there is no sign of this with me. Does anyone have any advice or experience to share?
Hi RobinBrum, I’m also on Rux and have chemically induced anaemia. I have been on this possibly about a year. No dramas so far. Hoping you get a reply soon 👍🏼🙏🏼
I've been on Ruxolitinib for about seven months. My haemoglobin goes from mid 80s to mid 90s, depending on how recently I've had a transfusion. Transfusions are usually monthly. My platelets hovered around 100 until a few weeks ago, when they dropped to 82, then 62, back up to 82 then 77 last week. My consultant is happy with those levels and said she was reluctant to reduce my dose because of the beneficial effects I'm experiencing. I've been tested for EPO levels but apparently it takes several weeks for the results to come back. Hope this helps, Jennie
I remained transfusion dependent after 6 months on ruxolitinib. Luckily my platelets hover at 250. I give myself EPO injections every 5 days. It took a number of months and an increase to get the figures up. They did eventually and I went down from every 3 days to the 5.
The only downside has been my ferritin levels which you mentioned too. Years of blood transfusions has raised them so now when my haemoglobin levels get to about 100 I have to go in and have blood taken off so the breathlessness starts again - bit of a vicious cycle. However I have gathered from this forum that this is much gentler than available drugs and in any case apparently they aren't licensed for mpns in Scotland.
Diana
I’m not sure I understand the logic of giving you blood then taking it away. I used to live in Scotland and knew other patients on desferal. I now use desferioxamine. I tried EPO for a while but noticed increased spleen pain so I had to stop. Actually my consultant in Scotland told me quite bluntly that I would not live long enough to worry about iron chelation! We left there about 4 1/2 years ago and I’m still here!
Luckily I'm not having transfusions at the moment but I take your point as I find it dispiriting for the EPO to take me up the ladder and then go down the snake again. I've had to get the practice nurse to annotate my notes as the GPs get exercised when they see the blood results after testing and a venesection. It's considered a gentler way of reducing the ferritin but the first time, due to covid, I had to go to a community hospital miles away for it to be done where my blood wasn't tested first and too much was taken off. I was about to phone and cancel the 2nd as I still felt so grotty when the hospital did and brought me back to my normal hospital which the nursing team, off their own bat, had decided was safer. Half as much is now taken. I have a new consultant and should see him face to face in June so with what you've said I will discuss it with him - thank you. Diana
Hi RobinBrum, would you mind me asking what dosage you take. I've been on Ruxolitinib for 18months 10mg twice a day but today I've been increased to 15mg twice a day because my spleen doesn't seem to be reducing. My Hgb is 120 , with platelets 82.
Jo
Joall
I was started on 30 mg a day, but I am now down to 15mg as of ten days ago. So probably too early to see what effect the reduction has had. I am now also back on EPO shots, once weekly. And I would love to have your Hgb and platelet figures! Interesting to note DJK12's experience with EPO as well.
HiI have been on ruxolitinib 5mg twice daily for over a year now. I was on transfusion every two weeks but went to six months after going on ruxolitinib 5mg Hb 90 platelets 30. I also inject epo once a week 60000 and zarzio 3 times a week. Recently I have had transfusions more often consultant does not wish to increase dosage on ruxolitinib due to platelets. Four years ago I tried a higher dosage of ruxolitinib but this made me very anemic.
Hi, Robin, in 2019, I changed to an Mpn specialist because my previous hematologist told me I had anemia and he just couldn’t figure out what to do. I was on Jakafi and Anagrelide at the time. My platelets were in the 700 range. My new doctor took me off both medications and put me on Hydrea, Fedratinib, and EPO injections every week or two. (This was done after a BMB and bloodwork that showed I had progressed to post Et Mf.) My Hmg was at 8.7. After 4 1/2 months, my hemoglobin leveled out, and we stopped the injections. I once asked her how I became so anemic, and she said it might have been the Jakafi. I don’t know if my story helps, but I thought I’d give you my perspective. I wish you well and hope you find answers soon.
Strange how everyone's experience differs - I was heavily transfusion dependent before starting Ruxolitinib but haven't needed a single transfusion since! My Hb now hovers around 100. Very recently my platelets dipped to around 50 so I may need to reduce the Rux, which will be a shame (though if it reduces my voracious appetite, that will be a plus). 😅
Robin, watch that high iron it's a home wrecker. Ruxolitinib limits supplements that can buffer iron so check with your health care professional before using any supplements. Watch your diet for iron as transfusions push it higher and be aware ascorbic acid increases iron absorption over four times. If platelets go below 50 Ruxolitinib may have to be withdrawn.
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