I am on Ruxo, getting progressively poorer quality of life as my Hb drops to <100 with increased anaemia. Feel light headed, permanently exhausted, my resting respiratory rate is up, presumably due to lack of Hb/O2. My white cells are consistently over normal limits c 14 and my platelets OK. What next? Anyone any experience? I was wondering about a lower Ruxo dose, as my HB was always OK when on hydroxy? Or erthythropoetin?
Ideas please! Seeing haem in 4 weeks and want to do some prodding!
PS I am not interested in SCT
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jane13
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Hi Jane. So sorry to hear you are feeling unwell. I can't help re Ruxo or MF. But just to say I totally understand re low HB I am also <100 . I have high platelets ET. I am booked in for an iron infusion this week which I am hoping will improve how I feel. Maybe you could ask the question at your next appt.
I do hope you get some help in improving your situation.
So to hear you are suffering such fatigue. Do you know your DIPPS score and have you been tested for other mutations?
My last post was re latest research update re Interferon/Pegasys and possible benefits of combo treatment with other drugs incl Ruxo. This appears an exciting new treatment option with good initial results, especially for MF patients.
Your options appear to be BMT or transfusions/epo or new drug say Pacritinib or combo drug therapy with Inf/Peg combined with say Ruxo?
If you are considering a BMB you should check with your Hem whether too many transfusions beforehand might be prejudicial.
Hopefully your Hem can advise re combo treatment/other drugs or refer you to another Hem with access to such trials.
Hi Jane, so sorry to hear you are feeling so lousy. Personally I wouldn’t wait the 4 weeks but insist on an earlier appointment. I’m sorry I can’t answer your questions but sending you big E hugs and E flowers. 💐💐 🥀🌹🌷💐💐🌸🌻kindest regards Aime xx😺😺😻😻
Hi, my wife has Hb at 99 and has been lower than 107 since May, her platelets were down to 140 last Tuesday where they had reached 1900 at one point in June. Her white cells are now a really good 3.2 though had been up at 45 while in France. We now believe she had an infection all the time since her splenectomy on May 2, and as she had no spleen could not regulate how many white cells she had in her blood stream, which is possibly why her body temp was so high at times. Maybe you have an infection? Causing you white cells to rise? Wishing you all the best. You should be able to see or phone your hematologist before your appointed visit.
really sorry to hear of your reduced quality of life. I am of no help I’m afraid - but you certainly deserve answers and hopefully, improved treatment!
I think Paul has given you some excellent advice, he seems to be up to date on the most recent research. I do hope you have a haematologist who is up to date on the latest MPN treatment. I know you live in Wales; is it possible to access a larger scope of MPN experts within the UK, or are you limited to Wales?
Good Luck with your forthcoming appointment. I hope some treatment is offered to improve your quality of life.
I have MF and am on rux and EPO. As I also have CLL I’m not able to go in for any of the trials of rhe newer drugs that Paul mentioned, that hold out promise of not causing the anaemia that rux is notorious for.
If you aren't interested in the SCT option ( and for myself, I’ve decided that I’m not) then my own experience is that transfusions have helped with the fatigue much better than EPO.
Right now, I’d be delighted to have regular transfusions if they gave me better control of the fatigue, but my counts are too good.
EPO sounds might be worth looking at for you - hope you get some relief from the fatigue. Do keep in touch. All the best
Sorry to read of your anaemia problems. Like you my HB was relatively good on hydroxy for a long time (100+), however things did catch up with me even on hydroxy. For me the speed of change was quite noticeable and difficult to adjust to. A while ago Rachel posted (?) that a medical person had stated a similar thing when HB change is rapid. My life became quite a lot more 'normal' once my HB stabilised. However 80 is not much of a level. Though it is funny what we can get used to and how we adapt.
I have not taken Ruxo. From what I have read on Ruxo, the patient's HB gets initially hit and then climbs back. Hope your HB level will climb back also and in the meantime you can get a few transfusions to tide you over.
It will be interesting to find out what your haem has to say about EPO and other suggestions.
Hi Jane. I’m sorry to hear that you are not feeling too good. I have been on Ruxolitinib for 5 years now and I feel pretty lousy when my Hgb is below 100. I am not a candidate for SCT either but my other counts are low now too - Platelets 39 and white cells 1.9. with resulting neutropenia. I have been having transfusions for most of the time I’ve been on Ruxolitinib as my counts did not rebound. I started with them every 8 week but now down to 3 week intervals. This has necessitated treatment for iron overload. I am trying to get into Pacritinib trial and should hear more about that from my Haematologist on Thursday. I have tried EPO but it caused spleen pain which others do not appear to have suffered from. Could be worth a try at least. Unfortunately trials have a catchment area by the fact of the need for frequent testing - at least in the initial stages. It is certainly worth asking your haematologist what might be available/suitable for you
Yep Jane, that is a bugaboo with Ruxo, but having been on it for over 4 years now the body does seem to adjust. The spleen is nicely controlled as are the platelets, the white cells to rocket a bit and of course fatigue is always there. I have found that the body does adjust and the anaemia is not a problem as long as it is above 70. I have transfusions when it gets below 80. That is quite infrequent. Stick with the Ruxolitinib if you have Myelofibrosis it is saving me. I believe there is a new drug in the wings that does not have the same anemic effect it is called Pacritinib. I dont think it is available. Hope I have been of some help. Life is good and keep smiling it will get better. My best wishes....Peter
Jane I am really sorry you are experiencing the level of fatigue you describe, I can't even begin to imagine....as others have said here, this may be temporary and I really hope it is in your case, because you are really going through the wringer.... I just wanted to say you are in my thoughts and I hope you can get some answers and relief. Sorry I can't be more helpful. Susan
Hi Jane, Guess that tiredness and dizziness are just a part we have to bear. I have good days and I often not so good. Your Hb at around 100 is not so bad, mine often go below 80. So you are not necessarily in transfusion territory. As fo lowering the Ruxo, what are you on now. I dropped fro 20 to 15 twice a day a couple of months ago and my Hb stabilised around 93 which is good. The Ruxo has kept the platelets in the normal range but reducing the dose has increased the white cell count ranging betwee 34 and 44. Have a chat with your harmonica and all the best ...Pete
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