Hematoma and Ruxolitinib

[MWxxxx]

Hi. I am looking for advice or reassurance. I am on Ruxolitinib and aspirin. I am also taking prescription iron tablets due to my haemaglobin being on the low side. My platelets and white cell count are the higher end of normal. In the past 3 days I have two hematomas in my hand out of nowhere. I have contacted my haematology appointment on both occasions but because my bloods were ok 2 weeks ago they dont want to do anything over the weekend. I have been told not to stop my aspirin or iron tablets and if i am still worried to contact Haematology on Monday. I am feeling really rather frightened. I have only been on Ruxolitinib for 3 months and I never had anything like this previously on hydroxy. I've also been told there is no point in going to A&E as I will not be prioritised. I'm not sure what advice I am looking for, I guess its reassurance I'm after as Monday seems a long way away.

[EPguy]

I'm on Rux + aspirin also. I recently had my left arm go all bruisy in just a couple minutes. In my case it's from other meds or supplements I take for my other condition. It's not recurred since I reduced some of those. Are you taking anything else that could be a blood thinner or anticoagulant?

[MWxxxx in reply to EPguy]

Hi. Thank you for replying. No I don't take any supplements or any other medication that should interfere with Rux. I do bruise very easily but this is something else - two veins suddenly bleeding under the skin resulting in swelling and a big lump even when i had done nothing. The only thing that has changed is taking iron tablets for 10 days -and I have been prescribed this before on hydroxy without incident.

[EPguy in reply to MWxxxx]

That is quite more than a bruise. I'm not aware of Rux having this effect, but I also relate personally to rare events. Hope others here can add more experiences.

[hunter5582]

Sorry to hear about the hemorrhage. As EPguy noted, I have not heard of this being an issue with RUX, unless the dose was high enough to cause thrombocytopenia. That seems unlikely this early on. Aspirin can cause inappropriate bruising/bleeding. This used to happen to me when the aspirin combined with platelet levels upwards of 800. It is an quirk of thrombocytosis that too many platelets can make you more prone to hemorrhage.

Given that your bloods were OK two weeks ago, this is a bit of a mystery. I am a bit surprised someone told you to keep taking aspirin when experiencing a significant bleed. It might be a good idea to get a second opinion on that recommendation. I believe you consulted at Guys a while back. Perhaps you can get a second opinion there.

Hope this situation resolves soon.

[MWxxxx in reply to hunter5582]

Thank you. They said I would need to be seen in person before they would consider stopping aspirin but that cannot happen until next week. You are right I had a consultation with Guys at the beginning of the year. I did ask for them to part of my care team but I think they have so many patients they said it was a one-off appointment and if I needed further advice I would need to go through my own Haematology team. Although if I manage to speak to someone next week I might be able to persuade them to contact Guys on my behalf for advice if they don't know what is causing it.

[Rem31]

I’m not sure my experience will help but will share it anyway. Four years ago I knocked my elbow on a door frame and it caused a haematoma the size of a small chicken egg with bruising from top of my arm and almost to my wrist. There were no broken bones but it looked dreadful and was initially painful.

At the time face to face appointments weren’t happening due to Covid so I spoke to a GP and then an Mpn clinic nurse and neither were concerned. They both said it would take a while to heal and not to stop taking any medication. I was taking (and still take) hydroxycarbamide and aspirin and they both blamed the aspirin.

The haematoma lump on the outside of my elbow soon became an inconvenient nuisance and it took 12 months to clear completely.

The following year, and for no apparent reason, I experienced a couple of subconjunctival bleeds which looked nasty but cleared in 10-14 days. Again there was no clinician concern (I’m under the care of Mpn specialist team) and I was told the bleeds were probably not helped by the aspirin.

Those experiences were bothering at the time but glad to say I’ve not had any repeats since then.

[MWxxxx in reply to Rem31]

Thank you for sharing. I completely understand how worrying that would have been. I'm glad you have not had any reoccurances. It does reassure me somewhat that these things can happen from time to time and are not necessarily a start of something far more serious - which is what is constantly in the back of my mind at the moment, so much so that I am afraid to do anything!

[RoundTheWorld]

Monday can indeed seem v far away with a worrisome medical problem out of hours.

Don’t forget the nhs 111 phone option, or the local pharmacist (actually looking at it in person) - might be a different route to a nurse triage / out of hours GP scheduled appointment if you’re increasingly concerned?

[MWxxxx in reply to RoundTheWorld]

Thank you. That is a good point. I was so caught up in the fact I had an emergency Haematology department number, I thought they would be more knowledgeable than 111. The nurse I spoke to on Tuesday was convinced I had knocked my hand, even though I know I didn't, but she did seem to know what she was talking about and I was reassured. - it was a one-off incident after all. However, when it happened again yesterday, the nurse I spoke to did not know what PV was but she did go away and spoke to a doctor, who I would have hoped being on a Haematology ward would know. But I didn't get to speak to the doctor direct so I don't know what information was passed on. Thinking back I should have rung 111 straight after as I wasn't too confident with the response I received from Haematology.