hi wondering if anyone else is coping with e.t.and crohns disease.
Was diagnosed with essential thrombocythaemia jak positive in October 24 and crohns disease shortly afterwards.
Treatment for ET hydroxycarbamide responding well and platelets reduced from 1300 now down to 807
originally had steroids for crohns but will shortly be starting treatment with “biologics”after consultation between both consultants Haematology and gastroenterology
.feeling rather anxious about starting this new treatment
Written by
westielover11
To view profiles and participate in discussions please or .
I expect there are more than a few with both a MPN and an inflammatory GI disease like Crohn's. Inflammation is the central theme. It is worth noting that the overproduction of inflammatory cytokines caused by the JAK2 mutation is a relevant issue. It is also worth noting that the inflammation in the GI system can cause reactive thrombocytosis. To make it even more complicated, hydroxycarbamide can cause GI issues, including diarrhea, constipation and nausea. It is very good news that hematology and gastroenterology docs are collaborating on your case.
Suggest that you double and triple check for medication interactions as you move forward. Include all of the meds and supplements that you take. I would also consult with a pharmacists and check myself. That is not to say that it is not OK to combine the meds, just that you need to be fully informed.
Hi sorry to hear of your diagnosis and the crohns disease.
I am fine on Hydroxy, I hope you get on well too. It does suggest you should drink a lot of water and I do that so not sure if it helps but never know.
I have to take 1500 (3 capsules) daily. Platelets now down to mid 400s so that is good.
Thank you for your reply. Glad to hear that your platelets are now in the 400s at the moment I take 500 for 5 days and a 1000 at the weekend. but with each visit to Haematology, they seem to be increasing them luckily I don’t seem to be suffering from too many side effects. I agree with you I also drink plenty of water it certainly can’t do any harm.
Hi Westi, I to have Crohn’s disease I’ve had it for 20 years and was diagnosed with ET calr about 8 years ago, I was on hydroxy then interferon but none of them really helped, until gastro put me on Humira injections every two weeks for the Crohn’s, that was about 2 years ago and since then my platelets are stable under 400 and my crohn’s is well under control. I’m currently on just Aspirin for the ET .
Thanks very much. I hope you don’t mind me asking some extra questions, What drugs were you being given before you were put on Humira by Gastro? I think my Gastro team are considering using Adalimumab.
adalimumab is also called humira , humira is just easier to say 🤣 I was on azathioprine and pentassa for my Crohn’s, I’m still currently on the pentassa as well as humira
Hi I’m 75,diagnosed last August with Crohn’s disease started steroids straight away to calm down inflammation. have now stopped steroids and will shortly be starting new crohns treatment with the ok from haematology.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
jak 2 positive
curcumin and ET Jak 2+
ET JAK2 positive
ET Jak 2+ Pegasys working well but ...
ET - JAK 2 negative
