I have Jak2 positive ET. I was diagnosed two years ago and I take Hydroxycarbamide 500 mg daily. My blood levels settled down very well on this treatment - the platelets sitting around 400. I am also taking the blood thinner - rivaroxaban 20 mg daily - as I had already suffered blood clots. I take 75 mg aspirin on Monday, Wednesday and Friday. This is in an attempt to ward off migraine with difficulty with speech. If I do not take a small amount of aspirin I readily develop one of these scary attacks when my ability to talk coherently can last for 3 - 4 hours. I discussed this with my MPN specialist and she said the decision to take aspirin would have to be mind but in view of the distressing headaches she felt the risk was probably OK.
Two weeks ago I noted petechial spots on my forearms and was advised by the Macmillin centre to get my GP to check all my bloods. The GP noted petechiae on my back and legs as well. The blood results came back satisfactory and I was told that unless the rash became more widespread I did not need to do anything. I noticed to-day more spots but not anymore widespread.
Can anyone on the site throw any light on what might be causing the rash or what I might do. I have an app to see my MPN specialist on 3rd July so I can discuss it with her then, but I wondered if I could do anything in the meantime.
Thank you
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Jelbea
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Hello. The only thing I can think of is maybe it's a reaction to a medication. I once got petechia from an antibiotic and when I stopped it it went away. I hope you can get to the bottom of things. ❤️
Thank you clubdino. I hope there is an easy solution here. It could be due to some of the medications I am taking and I hope it is not the hydroxy as it has worked well for me although I dislike taking it and it makes me very tired. By the way I love the pictures of your dogs. I have an adorable black labrador.
The picture is actually a painting of my dog that passed away that another member here did for me. She did a great job. I love labs. My dogs keep me going. There are days I know I wouldn't get out of bed at all if it wasn't for them.
I understand what you are going through with the fatigue. I only take aspirin but I struggle with fatigue too. To me it's one of the worst symptoms of having a MPN. ❤️
Sorry to hear of your struggle with fatigue and I agree it is a great downside of our ailments. Other drugs I am on also cause fatigue. I am so glad your dogs help you so much. They give total devotion and it is just wonderful in keeping you going. All good wishes
It is hard to say since rashes can have a number of causes. One of the possible causes is a medication adverse effect. Rashes are a know potential AE from hydroxyurea and other medications. I have had occasional rashes like this from Besremi. They are annoying, but not a big deal and resolve on their own. Oddly, the petechial rashes typically do not itch, which is another AE that I do experience with Besremi. Fortunately, taking Zyrtec (cetirizine) does a good job keeping this in check. I will also use a dose of Eucrisa for rashes that do itch as I have a prescription for it to control eczema. It also helps.
If the rash is bothersome, suggest reaching out to the MPN Specialist before July 3. That would be the most likely source of intervention advice given this is a potential hydroxy AE. I took a picture of the rash the first time it happened and sent it to my MPN Specialist in the patient portal. Was not a big deal and best to document it for the record.
Thank you Hunter for your detailed reply. The rash does not itch and is sparse - not widespread on forearms, upper back and on legs below the knee. As my blood levels were all OK last week and the rash is really not any worse I am hopeful it will perhaps disappear. However, I am seeing my GP to-morrow to get some AKs frozen from my face I shall let him see it again to see what he thinks, and also as I said I have my upcoming app. with MPN specialist on 3rd July. I wondered if my taking 75 mg aspirin three times in the week as well as my blood thinning medication might be perhaps causing it but if so I have been on these for some time without any bother. Who knows? Skin complaints are notoriously hard to diagnose. Thank you again for advice.
Hi, my experience of this issue are confined to my feet, ankles and legs (so far!). Heat and standing for too long are the culprits for me. I have ET, on HU and aspirin. My platelets are usually around 500. I’ve not really had it investigated but it isn’t pleasant so good luck. Xx
Thank you very much for your response. I did wonder if it might be our unusually hot weather at present. The spots have not multiplied and do not itch and as my bloods are OK at present I think it is just a "wait and see" situation. Good wishes
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