Fed up: Interferon not bringing platelets down... - MPN Voice

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Fed up

ciye profile image
ciye
5 Replies

Interferon not bringing platelets down, 135mcg, haemo does not believe that it will on its own. Adding 500mg of HU to see if that will help, urgh not happy but do have to admit after 11 months she has a point. Wasn't happy on that before.

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ciye
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hunter5582 profile image
hunter5582

I do not recall how long you have been on IFN, (just reread and saw the 11 months) but it does take longer to work than HU. If there is a reason you need to rapidly reduce the platelets, then of course of HU could be used. You could also consider Anagrelide, which more specifically targets the platelets. Regardless of what you choose, you always back off of it once you reach your target and see if the IFN will hold you stable.

Regarding your target, you might want to look at this link.

silvermpncenter.weill.corne...

Dr. Mesa et al also addressed the issue of platelet targets at the recent MPN conference. The opinions were that there is no set number for a "safe" number of platelets. It depends on the patient. There is a view that what may matter more is the delta (overall change in value) in reducing platelets rather than the actual number. This is something we need to learn more about.

I hope you have been staying symptom free even if your platelets are up. Ultimately that matters more than an absolute number of platelets. I would wonder about various combination therapies. Something added to the IFN. If you are comfortable with HU then that is fine. Anagrelide and Jakavi would be the other choices. Whatever you choose, wishing you success and s ymptom free journey.

Hope you get is all sorted soon.

Beup profile image
Beup

Anagrelide

Beup profile image
Beup

Oops- Sorry was trying to search this for posts

Pte82 profile image
Pte82

ciye, my wife's platelets stayed at 900K after leaving HU and going on Anagrelide. With her oncologist's approval she took 50mg of red palm tocotrienol twice a day. As the platelet count came down her oncologist reduced the Anagrelide until the platelets were in the range he wanted and she stopped the red palm.

NCB1983 profile image
NCB1983

It took a long time for my platelets to drop when I started taking interferon. But they did eventually. I was on 180mcg once per week. Now that they have dropped, my interferon dose has been lowered to 135mcg. I’ve never taken HU or Anagrelide so I can’t comment on that bit.

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