Follow up: Hi, I had my second monthly test with... - MPN Voice

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Follow up

Kelly2
Kelly2

Hi, I had my second monthly test with Hydro 500 daily (except weekends this month), and platelets went up from 281 to 520! So not so good idea to change the successful first dosage so soon. Very disappointing. On Monday I will contact the doctor for further instructions. Someone asked in here recently whether he should lower his dosage after reaching good counts. Well after my experience I would be more careful.

5 Replies

Yes, there is an element of ‘if it ain’t broke, don’t fix it’! So tempting to (wishfully) equate ‘successful’ drug treatment outcomes with disease resolution. Unfortunately for us MPNers it’s all about management. Clearly there are times when long term use or symptom burden can prompt a conversation about downward dosage changes but generally I think we have to take the long view.

Interesting, I was stable when on 12 x500 a week . Platelets 450. I wanted them lower as I was walking around as if wearing a lead suit. A reduction of one tablet a week slowly led to a platelet rise of over 500. 2 years on and I’m still not stable. I’m now on 17x 500 of hydrox plus 14 of anagrelide a week. I’m being monitored closely.

Kelly2
Kelly2 in reply to Wyebird

It seems to be getting worse instead of improving. Really discouraging. 😢

Hi kelly2, don't get to despondent,when i was put on hydrea, my counts continued climbing & i really did feel awful, to the point i really believed i was actually dying & i'm a pretty strong person! But within a few months of being on hydrea i started slowly to get some relief from the symptoms. I notice from your last post you had a bit of a cold,anything as insignificant as that can have a negative effect on our blood counts. So try not to worry too much. If you do have any concerns,get in touch with your haemo nurse specialist to put your mind at rest. Atb,tina.🤗

Kelly2
Kelly2 in reply to Tico

Thank you Tina. Yes I still have not totally recovered from that cold in fact I feel that I got it in my chest but I am trying by resting not to take antibiotics. I am away from my usual surroundings at the moment and will be back in a few days so I will ask advice on that. It was disappointing as I was thrilled with the first results so soon after I started Hydro. I didn't know that it is such a fragile balance or I would have listened to my other doctor who said I should continue with the daily dose. I feel as if I have lost this month for nothing and the nuisance of the blood draw for that matter. Well now I know better. (The whites were normal strangely) Thanks again.

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