Crotchety - grandma aged 74 with PV

[Crotchety]

Is hydroxicarbamide and low dose aspirin after seven years failing to control my symptoms? I have involuntary weight loss, a feeling of fullness ( doesn't feel like spleen) , night sweats, sudden and unexpected fatigue. All worse. Last haematcrit 46 early May. Had gone up since February. Phone consultation. Consultant didn't change meds or 4 month next appointment . No chance to speak. Very active and busy normally. So frustrating. Anyone else had these problems with hydroxicarbamide?

[DJK12]

I had the same problems 7 years ago while on anagrelide and aspirin plus topped up periodically with HU. I'd been on HU for 15 years alone till it stopped working.

The unintentional weight loss was marked but my then consultant didn't pick it up, despite always being weighed, till I pointed it out, plus enlarged spleen which I couldn't feel. He then arranged an immediate BMB for comparison to the last one.

Telephone consultations are now the norm and sometimes difficult to get points across as they are obviously busy. None of us are being weighed at the hospital or having our spleens checked as before.

Personally I would email him/her via his secretary (very unlikely you will be given his email address but my present consultant's secretary is happy to send them on) listing these symptoms and saying you understand (perhaps in order to get him to address your concerns) these are red flag symptoms which should be reported and you need advice about efficiacy of medication before next consultation.

I would copy in your GP either by email or paper copy.

Other forum members may have more recent experience of this. I hope you get some answers from the consultant.

[hunter5582]

Hard to say what is the PV and what is hydroxy side effects. Likely a bit of both. When was your last venesection? That could also play a role. I would wonder if it is time to consider another treatment approach if what you are doing is not working for whatever reason. There are other option than HU that may work better for you.

Now more than ever, assertive patients get higher quality treatment. Passive patients do not. You may need to push to get your concerns addressed. If you cannot get an in-person visit, then definitely push for tele-video. It is WAY better than a telephone consult.