ET + Anagrelide

[Zeppelin11]

Is anyone taking Angrelide and dealing with side effects? I have ET+CALR, became resistant to Hydrea and couldn't tolerate the side effects of Interferon. Now that I'm on Anagrelide (0.5mg twice a day) my platelets are in the 600,000's and I seem to tolerate it ok. However I deal with rapid heartbeats, headaches, fatigue, mood swings and dizziness. I know the benefits outweigh the side effects but it can be very defeating. I eat good, workout, drink plenty of fluids and take vitamins. If you saw me you would assume I'm a very healthy person, but I'm trying to find energy on a daily basis. I'm a Photographer and have even thought about taking time off because of this. Somedays the side effects wipe me out. Can anyone else relate?

[hunter5582]

Sorry to hear about the ongoing struggles to find a medication that works for your case of ET. Is sounds like you have been through the medication mill. You list rapid heartbeats, headaches, fatigue, mood swings and dizziness as symptoms. Not clear if these are all side effects or a combination of side effects and MPN symptoms. I believe you have said before that some of these symptoms were prior to taking medication. Some interventions would be based on whether the symptoms are from the MPN or medication side effects.

I would suggest that an arrythmia should be considered a serious adverse effect. This is something that needs proper assessment and either treatment or a change in medication.

There are still more options if anagrelide proves unsuitable. Jakafi can be used off label in some cases. There are also medications in clinical trial such as bomedemstat. Besremi is also in clinical trial for ET.

It sounds like it is time to review options with your MPN care team. I do not recall if you are consulting with a MPN Specialist. If not, this would be a good time to get a second opinion.

Wishing you all the best.

[dbus1417]

don’t have a ton to add other than hang in there. There are many promising *curative* treatments on the horizon for our mutation.

My hem at md Anderson suggested we would go to rux if interferon quit working until one of the novel antibody therapies made it to prime time.

Never give up 💪🏽

[EPguy]

You are likely qualified for the Bomedemstat trial. It's in late phase 3. But the main trial site shows none in the US.

clinicaltrials.gov/study/NC...

While this site shows one in N Carolina, but even if that is near you it's not listed on the main trial so seems iffy on this location.

cancer.gov/research/partici...

--

Shame on the IFN, I know too well its vagaries.

As Hunter says, if you can access Rux it's worth considering, I'm on it.

[Preacherswife]

I was took Hydrea for about 6 months then had an allergic reaction to it. Hematologist put me on Anagralide. I took it for 3 days and experienced palpitations and headaches and was taken off of that. Dr, did not want to put me on interferon injections because of the side effects is he put me on Eliquis to think my blood so it would not clot.

These bodies are something else when it comes to medication. Wishing you the best,

[ts75 in reply to Preacherswife]

Wauw 3 days is nor very long! Why did the doctor take you off? I had the same but both totally went away - first the headache after about 3-5 days and then palpitations after about three weeks! I suggest to try it longer if it’s not serious heart problems…

[George1976]

Same exact thing happened to me on Anagrelide. Only suggestion I can offer is to take just enough to have the fewest side effects. Also might want to see a dietitian as anagrelide and some foods don’t go well together for example dairy.

[Zeppelin11 in reply to George1976]

Thank you for your response. I definitely notice my stomach in regards to food. Were there any other foods other than diary? I don’t really eat dairy as it doesn’t agree with me. Thanks again!

[George1976 in reply to Zeppelin11]

Can’t think of anything else. It’s been about 8 years since I stopped it. I do know I’d get extreme upper abdominal pain after being on it a while. Had all sorts of tests and nothing was ever found. My MPN doc at the time chalked it up to IBS.

[Tfinnerty]

I couldn't stand taking anagralide with the rapid Heartbeats and the swelling of my legs, feet and hands. Ive been on hydrea now for 25yrs with no side effects. But now im turning towards pv with elevated bloodwork .