I was diagnosed back in May last year with MF Calr type 1 symptomatic without enlarged spleen and was started on Ruxolitinib 20mg BD, 300mg allopurinol and 75mg aspirin. My platelet count at diagnosis was 821 and over the following 8 months hovered around the 740 mark. My haematologist was keen to bring the platelet level down so added 500mg Hydroxycarbamide to the equation daily. 2 months on at my next appointment I was saddened to hear that my consultant had also fallen to cancer and would be off whilst being treated. I saw a new consultant who increased the Hydroxycarbamide to 1000mg a day. A few weeks on I was having issues with my stomach so contacted my CNS who spoke to yet another consultant who is taking over from my old one until he returns (fingers crossed) and was advised to stop all medication and that they would bring my appointment forward to yesterday. I duly attended and was told that she was not concerned with platelet levels and that she had looked at my BMB and in her opinion it was a crossover between ET and MF. She now says that I am to be on watch and wait with 75mg aspirin daily. At the appointment I was actually quite pleased but am now having a nightly feeling as I trusted my first haematologist and every one I had seen had been singing from the same hymn sheet and now we have a new choir master!!!!
I am very confused and also feeling a bit rubbish as well. I had been told that Ruxolitinib should not just be stopped but should be tapered off.
I would appreciate people's thoughts
Regards
Graham
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Graham7694
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I agree it's disconcerting and unsettling when you have such differing opinions from your medics, seems a drastic step to just stop everything at once it's quite disturbing that doctors are so radically different in their treatment plans, I'm sorry to hear you Heamo is unwell. Is there another consultant that you could see within the department? If you are not happy or unsure with the advice you were given, I think to put your mind at rest you need to speak to someone else....but difficult to do.
Maybe speak to your CNS.
Sorry I can't offer any help but do understand your concern.
Yes. Such drugs should be tapered off. I have had 3 doctors in 3 months then I went private. At least I had more time with the private one. All seemed ok, but I still. Didn’t feel really comfortable with him. I just found a new one, not private and she really takes time to listen and discuss details. She explains everything and we made decisions together. It is important to feel important, listened to and safe. That is half the therapy. Listen to your gut. Take good care of yourself.
That is my understanding too Graham, as there is such a thing called - RWS – Ruxolitinib Withdrawal Syndrome, that can occur as a dosage is reduced etc.
Under the circumstances, perhaps another opinion might be best... ?
I have heard back from my CNS and she has confirmed the diagnosis is now ET. I am not sure whether to be elated or peed off that I have been taking a concoction of medicines for the last year that I didn't need to.....
My understanding is that very tricky to dx ET from Pre MF. That you are ET CALR 1 increases the odds of being more in the MF spectrum since CALR mutation appears to speed up progression.
However the good news is that Pre MF CAL 1 has a good prognosis, much better than plain vanilla MF.
Have you discussed taking Pegasys with your Consultant? There is one camp of Hems who believe that early use of low dose Pegasys can slow progression for some people.
I’d agree with the people who,have advised you not to stop the rux abruptly, but to taper off. The hydrea has a long half life so it tapwrs naturally, so to speak, when tou stop taking it.
There are now evidence based protocols for the best ways to treat mpns -
Too late with the Rux now as have been off for two weeks! I have emailed my CNS this morning and asked for a second BMB to give a firm diagnosis. If this is not forthcoming then I will visit the go and ask for a second opinion referal
Oh Graham, I am so angry and upset reading this. I have the same diagnoses as you and have been toldthe complete opposite. It's like being blind whilst wading through a swamp. Hope you feel better/ calmer soon.
It is all to common to find significant differences in tx reccs from physicians. Medicine is not always an exact science and treatment philosophies vary between docs. Add to that - some hematologists know more about MPNs than others. Some thinking is that elevated platelets (below 1 million) do not alone raise your risk for thrombosis. Leukocytosis in conjunction with thrombocytosis is a bigger risk. I just found all of this out after about a year on Hydroxyurea (my third time on a cycle of chemo). The MPN specialist was clear the HU was not a good match for my PV profile, so I am stopping it. He also noted that I may have Acquired von Willebrand - so recommended against the aspirin as well. Worth bearing in mind that elevated platelets may actually lead to increased bleeding risk rather than clotting.
My new consultant does not feel a new BMB is necessary at the moment however has offered to refer me to the QE for a second opinion for peace of mind. I have accepted this as it should settle matters once and for all 👍 she also says that diagnosis of ET and MF has recently changed and does not just look at the bone marrow but also symptoms which I had not heard of
Did she alaborate with that statement graham? My cns is asking my haemo to refer me to an mpn specialist at the Q/E Hospital, i will speak to her again friday. Also did yours give you a name for referral as my cns knows a nurse married to an mpn specialist there! I know we do not live far apart graham and you once mentioned which hospital you attended, was it one in worcester/worchestershire where you live? You must have had a nightmare in the last year what with the first diagnosis and then now being told this,i completely emphasise with what you've been through. Best wishes, tina,🤗
No elaboration on the statement I am afraid. I have no details for the referal but guess it will come in time. I am currently at Worcester Royal but understand the QE have specialist MPN doctors so hopefully I can get some clarification. I do have a feeling I will start to feel a little better now I am off the medications ....
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