I have been on Ruxolitinib for post ET MF since last August. It's been really effective at shrinking my spleen and reducing my WBC count. Hb varies and I have a transfusion approximately monthly. I'm concerned about my platelets though: after holding steady at around 100 for months, they have now started to fall. Two weeks ago, 81 and now 61. I will be seeing my haematologist on 24th March but I'm starting to feel anxious and wondered if anyone has thoughts about this. The haematology nurse thought it may be the medication but she wasn't sure. I am on 20mg Ruxolitinib twice daily.
Thank you, Jennie
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I cannot help ,but for me the Rux has lowered my H C T ,H G, which have refused to go down for 11 yrs.However my very low platelets have gone up to nearly normal for how it's counted here in Fr. I believe every country has a different method. So it's a hard management of these drugs.I hope you get a good result when you next see consultant.Must admit I sometimes wonder if they really know.I am 20 per day of Rux. Really hope all goes well,the anxiety is dreadful !I know only too well. Very Best Wishes Sally.
By the way I have had both my Pfizer vacs,& I am Ok so that's one less anxiety.
Hi, Jennie, so sorry you are going through a rough time with your illness. I’m also sorry I can’t be of more help. Even though I also have MF, my platelets kept rising this year. Our disease is certainly a strange one. I hope you get it sorted out soon. I will be thinking of you.
Hi Jennie , I recall my Platelets dropping out when I was on Rux and my dose was half of yours. We played around with it for a time say 20gms / 10gms alternate days , and after a bit of tweaking things settled. I wasn't really on it long enough (about 14 mths) to say whether it would of remained stable.
Is the higher dose responsible for your need of transfusion. You can by with lower platelets but you don't really want them very low ie below 40 or 50 in my view. Mine have been around 90 - 100 for last few years and just crept up to 117 so they can fluctuate.
Maybe just a slight tweak of your dose will help.
I had quite a number of Platelet transfusions post SCT but they didn't always put my level up much because my Hem thought my spleen was absorbing or filtering them but I don't know any detail as to how or why.
Good that the Rux helping your spleen, ,it didn't shrink mine but might have kept it in check which is one reason why I came off it.
Good Luck , I hope you get sorted and back on an even keel.
Thank you, your experience with Ruxolitinib/platelets is reassuring. I suppose I don't know enough yet to know whether my high dose is creating the need for transfusions, that's something I can discuss with my consultant. Luckily she is very approachable and open and, although not an MPN specialist, she gets in touch with the team at Guy's & St Thomas's as needed.
There's also the possibility of a twinning therapy that is to couple a lower Rux dose with something else. My local Hem at the time wasn't at all proactive in fact we called him Mr Wishy Washy 😃. I went one day after being on Rux for a time and it not being as effective as it could of been and another Hem from a hospital out of the area was visiting and I was asked if he could sit in. I had no objections.
Within a few minutes he suggested a couple of different approaches that we might try but my Hem just ummed and arred. He even said I don't know why I'm seeing you really because Dr X (another Hem in the adjoining office) knows way more about MF than I do. I said so why the heck have I been seeing you for 18 months and not him. The look on the visiting Hems face was priceless. When he shrugged his shoulders I knew a second opinion at a different Haematology centre was the only way ahead.
Perhaps not all relevant to you just now Jennie but if your treatment stalls or you feel you're being sold short then you have a choice.
Thrombocytopenia is one of the side effects of ruxolitinib. Like so many of the decisions we make with treatment for MPNs, there is a risk/benefit profile for all meds. I am really not sure how the docs will want to address this. Perhaps it will be at least some relief to know that the decease in platelets is most likely the result of the ruxolitinib.
Please let us know what you find out. Meanwhile, hang in there my friend.
Thank you for your thoughts, especially your point about risk/benefit. I suppose it might be hard to get the dose right as my WBC count has been improving and my spleen is definitely smaller. I feel reassured to know that the platelet issue is probably caused by the medication, rather than something else going going wrong in me.
As a fellow sufferer of MF, I sympathise wholeheartedly. I've been on Rux for 4 years now and it controls the disease well. But as every appointment looms, I worry about things changing - something I know will undoubtedly happen.
I know I would be struggling to wait until 24th March and wonder if you can get an earlier appointment (?).
Thank you. Yes it's that fear of change and deterioration that frightens me too. I accept that the platelet issue is likely to be due to the Ruxolitinib but then I find myself thinking but what if...?
I think I have to be patient and wait for my appointment as I have a CT scan of my spleen the week before, so she will need to see the results of that before seeing me.
Worry is a nightmare isn't it, but I feel a bit better having posted on here.
Certainly ruxolitinib is an excellent drug for reducing spleen size and platelets. It also got rid of the awful night sweats I had. However after about 9 months on it at 20g I was still transfusion dependent and the consultant felt my platelets had come down far enough so he reduced the dose to 10mg.
I was still needing transfusions - and ferritin levels were rising - so was started on EPO injections. We are all different but has that been suggested or looked into? They took a while to work and had to be increased, but for 18 months my red blood count was almost normal, and injections were decreased, though unfortunately it looks on the slippery slope again.
If your rux dose is decreased just raise the question of it being done gradually I was dropped from 20 to 10 in one day. A couple of weeks later I was in hospital for 2 days with a very high temperature and infection - probably from catching an ordinary cold off a visitor. The consultant on duty, an MPN expert, thought it could have been sudden withdrawal syndrome and it should have been done more gently.
Hope you get an answer soon about the platelet problem. I've been lucky as rux stabilised them at the first normal level for 30 years.
I am sorry of i didn't understand, but did you say that rux stabilised your platelets for 30 years??? Or because of my English I didn't get the sentence? 😀
No I didn't put it well - my platelets have been stabilised at about 250 for last 3 years while on rux. Before that they had sat at between 550 - 600 while on hu and/or anagrelide, having started at 1600. Pegasys actually brought them down for 6 months but I had a very rare reaction to it and had to come off it.
Thank you for your thoughts. I have been tested for my EPO levels and my consultant might prescribe it if necessary at my next appointment. In a way, I would be glad if I needed it as it would be great to need fewer transfusions.
Thanks too for the warning about decreasing the Ruxolitinib too quickly, I will definitely push for a more gradual approach.
I'm not surprised you are anxious and hope the consultant comes up with a good plan. Oddly a previous consultant tested me and said EPO wouldn't work but the subsequent one who put me on it encouraged me to persevere when it didn't seem to be working.
The trouble is that rux affects us all differently. I've been so lucky and my platelets stabilised, but like you I couldn't shake off the transfusions. I haven't put on the weight I lost and although my spleen shrank my appetite is not brilliant. However not having the night sweats is a huge bonus - have the occasional one but not the previous nightly ones. So exhausting from both being woken up and the constant washing!
Hello rux does lower platelets I have been taking rux for nearly 5 years my last platelet count was 8 I went from 297 to 80 to 59 and now 8 it’s not the first time sometimes they suggest a break or adding something in or just simply lower rux for a bit to give you a chance to increase but i understand your feelings and I wish you well iam on 20 twice a day to have you had any other factors spleen growing struggles eating sweating
Leigh, my wife's oncologist put a hold rux when platelet count went below 50 and removed it when the count remained below 50. She was then started on three fedratinib caps a day which also resulted in low double digit platelets. She is now on one cap every other day without seeing an improvement. Replacement platelets are given at a count of 10. Your count of 8 is seriously low with a possibility of internal bleeding. This link shows appropriate rux dosage levels depending on platelet count. I hope your doctor is taking appropriate action.
Leighcox85, label dosage for rux shows a hold for sub 50 platelet counts. My wife was moved to fedratinib from rux because of low platelets and it is lowering platelets too even with one cap every other day. I've read papaya or papaya extract has a positive effect on platelets. I have not found anyone with MF reporting their experience.
Thank you very much for your information it’s very helpful I have an appointment for face face tomorrow I spoke to my team Monday and they wanted an urgent Appointment which will be tomorrow hopefully I will get some plan I have portal vein thrombosis and bleeding veins in throat so bleeding is a problem for me iam also on high doses of blood thinners so it’s worrying I could bleed they did mention fedratinib on the phone but a lot of trials are on hold with covid at the minute so iam just hoping it will be ok
Thank you, that information is reassuring. At diagnosis my spleen was enlarged, I was becoming alarmingly underweight, had some night sweats and the itching was unbearable. After a few weeks on Ruxolitinib all of that was sorted out, so on the whole it's been really positive, even if now I've reached the point where the dose needs adjusting.
Glad the Rux has reduced your spleen and WCC. It think your team will likely do cautious reduction on your dose. Hopefully bloods should pick up a little then but it is a balancing act when you do lower dose as sometimes less effective on spleen size. Haematologists are usually quite relaxed about low platelet levels and only monitor more regularly in general population when dip below 50 and then don't tend to intervene unless you get more to below 20-30 range.. Useful to keep an eye out for any unusual bruising or easy bleeding which can be sign of your platelets being low.
Thank you. After having ET it's strange to get used to the idea of having low platelets. I understand what you mean about the balancing act - I really don't want a very enlarged spleen again as it became very uncomfortable.
After years of ET in which the aim was to reduce platelets to within the normal range and maintain them there, now you have to worry about platelets falling too low! This is the crazy world of MPNs ...
All the best for your next appointment and I hope that your medical team will find an approach that works for you.
Yes big spleens aren't nice. Mine shrank really well with the rux but had to reduce dose due to getting bit anaemic etc so feeling spleen bit more again now-such a balancing act.. Good luck
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