just some advice : hi lovely friends so I went for... - MPN Voice

MPN Voice

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just some advice

Staroftheday profile image
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hi lovely friends so I went for my bloods on Tuesday the doctor phoned me on Wednesday to say my platelets have gone hi so they have upped my dose 90mg pegsy and 45 mg the next wk to alternate, the doctor has advised me that going on another medication hydroxide I think it’s called , am always so tired have headaches and also migraines I’ve started with tinnitus also any advice xx

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Staroftheday
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hunter5582 profile image
hunter5582

Sorry to hear that the thrombocytosis is increasing. Also that the other MPN symptoms or possible Pegasys side effects are problematic as well.

I would wonder is another approach to the PEG dose might work better. Rather than alternating 45/90, try a 67.5cmg weekly dose. Some on the forum do precisely that. I have increased doses by half as well.

It sounds like the hematologist may be considering hydroxycarbamide, which is another option. There would be some information for you to review prior to making a decision.

Wishing you all the best.

ainslie profile image
ainslie in reply tohunter5582

I would agree with 67.5 instead of 90/45, if it can wait to see how the extra Peg does you may not need the Hydroxy, I have heard mixed results on how well the 2 drugs mix, how long have you been on 45 Peg.?

Hopetohelp profile image
Hopetohelp

Yes like Hunter said, 65 each week sounds a good first option. I have been on 65 for a couple of years. Worth trying that to see if it works. You could always consider adding Hydroxycarbamide in to the equation later if it doesn’t work

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