My husband is diagnosed with ET and PV back in 2018, he is 42y. His migraine is getting worse over the years, at this point he can't work because the pain and fatigue.
His MPN is under control bij medication, butt the doctors can't get his migraine under control. We are from Belgium, i am looking for solutions...
I just want to found something to make him better, getting him back
I am so sorry . I have heard that one of the side effects are awful migraines along with E.T . I have had the side that has fatigue and I couldn't work no more. A lot of people that I have got to know through mpn have the aura migraines. I know the pain has been also dreadful for them. I hope that your dr and consultant can find some relief for him soon x
Every sympathy - migraine is hard work. You don't say what medication he is on. I had an increasing number of migraine aura in the few years before I was diagnosed with PV. These have stayed over the last 18 months after being prescribed low dose aspirin, later swapped to clopidogrel.
He´s on Jakavi, aspirine 80mg. And Ajovy, this are injection´s for migraine patients.. his migraine episodes have increased thro the years since his dainose
Ask about Besremi in combination with the Jakafi. Do you know what his allele burden is and whether it has gone up since starting the Jakafi? The migraines also may not be from the ET. My daughter gets migraines, but after some testing they determined she just needed vitamins. It's been remarkably effective.
The problem in Belgium with Besremi (interferon) is, it's very expensive and als patiënt you have the pay it yourself. And it's only availeble when other medication doesn't work any more. The episodes of migraine are the same as before the Jakavi
Is there still a shortage of Pegasys? That is more similar to Besremi and I think it is covered in Europe. If there still is the shortage I think they said it was supposed to end fairly soon, I want to say May?
I just looked it up-
The shortage is expected to continue for some time, with estimates indicating it may last until the second half of 2025. Manufacturers are working to increase production and address the supply issues.
Still worth asking about and to see if it would be covered. I think Peg is what is routinely covered in some of Europe. However I have seen a lot of others here who have said that because of the Peg shortage a lot seem to be getting transferred to Besremi. I would definitely ask about that-
Sounds like they are trying hard to resolve them. Sorry not to be able to offer more advice. Hope you get a better solution.
Hi
I can only speak of my own experiences.
Migraines (aura migraines) were very disabling for me prior to my diagnosis a number of years ago. I would suffer from at least 3-4 per week & sometimes have a run of back to back migraines. It was awful.
Once I’d been diagnosed (ET J2+) & prescribed medication the migraines have all but gone. I probably only get a few per year at most.
Im currently taking; Interferon, Peridopril & aspirin.
May be worth asking the consultant if a change of meds might help.?
All the best,
Mark
So sorry to hear that. I had migraine auras frequently for the decades I had high platelets. On rare occasions I had strange brief "black outs," which was like a black curtain quickly closing and opening again--some docs think this was related to the migraines. This was before any medical person tested me for ET or PV. I was told the migraines might be a separate issue from the platelets. However, since diagnosis of PV, Besremi has reduced my HCT and platelets, & I rarely have visual migraines. I wish your husband help!
Actually how sure are you that his MPN is under control?
What are his platelets?
What is his HCT?
What is his WBC count?
What is his RBC?
What is his MCV?
Has anyone had a bone marrow transplant who has PV? 
ET related fatigue
Post ET MF - Advice Please
How long ? 
