Roller Coaster: I was diagnosed with ET February... - MPN Voice

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Roller Coaster

Chris3875
Chris3875

I was diagnosed with ET February 2016 with platelet count just over 2000. Onto Hydrea, dose slowly increasing to 3x500mg capsules 3 days a week and 2x500mg capsules 4 days a week. With a few ups and downs, count gradually decreased to just over 600, but all of a sudden, for no obvious reason the count shot up last month to 998. I feel well in myself, but can't help also feeling frustrated and a bit depressed. Dose has now been increased to 3x500mg capsules 5 days a week and 2x500mg capsules 2 days a week with further blood test in 3 weeks. Fingers crossed.

8 Replies

That is so annoying to think progress is being made then wham!! Still am sure it will go down again. I was 1450 and on 1x 500mg for past 3 weeks now down to 1350 - quite slow. How long did it take you to get down to 600??

You are like me - I feel fine other than ringing in my ears wakes me early in the morning.

Hope you get it sorted quickly

Took about 20 months. Oh well, onward and upward. Haematologist doesn't like increasing the dose much because it can have an affect on haemoglobin which can cause fainting and other nasty stuff.

Tico
Tico in reply to Chris3875

Hi chris3875,i can relate to your concerns regarding low Hb, 2 months ago mine was at 11.2,which is a tad low as for a female i think it's around 12.1-15-1. When i had my bloods done wednesday,platelets had jumped from 666 to the lower end of the 200's but haemo more concerned about another drop in my Hb which as gone to 10.2. Platelets never a concern as such because i have big drops & big jumps in them,haemo only worries when they go near the 1000 mark because of my history. The low Hb, does though explain the more frequent headaches & breathlessness. Think i will have to forego the brussels sprouts with my turkey this year & fill my plate with iron rich spinach!!!... Atb, tina.🤗 p.s.only joking about the sprouts, wouldn't be xmas dinner without them...

Have you done any flying with the high platelets- I am supposed to be in the Antipodes but looks like I might have to go through an English winter brrr - haven’t done that for a while

Yes, done quite a few trips since diagnosis - mostly short hops Melbourne to Sydney return, but also across to Perth and up to Darwin - no detrimental effects and Haem was not concerned. We are having a late icy blast here in Victoria only a few weeks before Summer officially starts !! Snow on the mountains.

Am hoping to head to Aus and New Zealand Jan/Feb fingers crossed

Chris

Have you considered switching drugs? It seems some people do best on HU, some on INF/Pegasys. Bit like Harry Potter and matching wands to wizard!

If your Hem can offer Pegasys (weekly injections and better tolerated than the regular INF) I’d definitely discuss this with him/her. Not good for people prone to depression or autoimmune issues.

Best

Paul

Chris3875
Chris3875 in reply to Paul123456

Hi Paul - thanks for reply. Haem doesn't seem overly concerned at the moment but I will keep your suggestion in mind should this increase in Hydrea not produce the results she is hoping for. Trouble is, I feel so damn fit - no side effects from either medication or condition.

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