Hi
Specialist has stopped my hydroxea after being diagnosed withET jak + 1 month ago my platelets have gone from 1000 down to 245
I’m only taking aspirin now
I’m 52 and understood i would have to be on meds for life?
Anyone ever had this happen?
I’m due back with doctor in 5 weeks
Shall I get blood test done in between as ive been feeling really tired this past week and wondered if it’s because I’m not on medication
Can you call your doctor or her or his nursing staff and ask? They’re probably the best ones to advise you. Katie
Maybe your platelets have gone up again. How about going to your heamo and suggesting you ask your GP and asking for a blood test.
All my appointments with my Haematologist, I need blood test before seeing him. Last appointment he did say if my platelets down to normal range and keep stable then I may be able to take a break from Hydrea but still need to monitor regularly.
He meant just a little break only if blood count gets low and stable but still blood test regularly, cannot stop blood thinner at all.
Aspirin only is a common protocol for someone your age with platelet levels below 1 Million. Above 1 Million, things do shift a bit. Your response to HU is a bit unusual, but we all respond differently. Our MPNs also can present differently than the norm. For some of us with ET or PV when our platelet levels go up, it is our risk for hemorrhage that increases rather than our risk for thrombosis (my own situation). Recent research indicates that the risk of Acquired von Willebrand Disease may occur when platelet levels are in the 800Ks. It used to be thought that this only happened when platelet levels were well into the 1 millions. Hopefully your doc is keeping an eye on your prothrombin times and has done a von Willebrand Panel. If not, it is worth looking into if only as a precaution. With a rate of occurrence at 1/3000,000, MPNs are rare disorders and many docs, even hematologists, are not really on top of state of the art diagnostics and treatment. If you have not already found one, it is worth at least insulting with a true MPN expert. I found an outstanding MPN specialist from this list of patient recommended docs with this expertise mpnforum.com/list-hem/ .
Hang in there and try not to worry too much. I was diagnosed with ET over 30 years ago. While my ET progressed to PV about 6 years ago, I still have been only mildly effected. I am luck to have a JAK2 Mutant Allele Burden of only 25%, accounting for my light symptom load. If you have not had a JAK2 Mutant Allele Quantitative Analysis (or similar name), this is another test you should have done. All the best to you.
My jak2 mutant is only 2% so that’s really low I guess
Thankyou for reply it’s reassuring hearing from experiences of others as I’m not sure my specialist is an MPN specialist but will check
Hi. My husband has PV and was put on Hydroxy a couple of years ago soon after diagnosis. About 2 months later he was taken off it and he has managed fine with a blood thinner (clopidrogel) and venesections when needed. Now his platelets are rising a bit and the latest thing the nurse said is that he may need to go back on Hydroxy. So, the conclusion I arrive at is that Hydroxy need not be life-long but used when and if required. Monitoring is so important with this illness and even more important is having the right responses to the monitoring, by those with the medical know-how. We really do put our lives in their hands...and pray they get it right. Good luck with your treatment. X
A month into Pegasys, Australia …
Just had my 3 month hemo visit.. :/
Has anyone that’s prone to depression taken PEG INF / Pegasys?
Still off Besremi
The worst month ever.
