Hydroxy

[Frankydafish]

Finaly got my script. Im on 1000migs a day is this a high dose? Jam st started it today so only time will tell how i handel the dose. Again thankyou to everybody for the support thru the sceary times over the last month ir so since i was diagnosed. Iv really apriciated it

[Pippa63]

Hi I'm on the same dose and have been for 3 years with no real issues except fatigue which is common . Wishing you well. Pippa

[Frankydafish in reply to Pippa63]

Thankyou

[stillkicking]

Hi Franky,

Some do start at 1000mgs, and some at 500mg, it does depend a bit on the hematologist as they all have their own ideas. I started at 500mg, but have built up over time, so now am 1000mg the first day and 1500mg the next.

The very first pill I took made me feel a bit nauseous for the first 24 hours, and I was worried about how I would be when I took the next pill, but it all got much better after that. Having a sip of water helped a lot if I did feel a bit uncomfortable.

I like to take my pills after a meal and to have plenty of water with them.

I'm guessing that you will be having blood tests every 2 weeks to start with to check on progress?

Good Luck!

Peter

[Frankydafish in reply to stillkicking]

Ill admit it i was a bit worried but i seem to be handling the meds quite well so far. Fingers crossed it stays that way. And yes blood tests every 2 weeks and 3 weekly catch ups

[stillkicking in reply to Frankydafish]

Glad things are going OK so far

[mhos61]

You may start at this dose to try and bring your platelets down quickly. If you respond well the dose maybe lowered at a later date.

Good luck, and I hope it works well for you.

Mary x

[Frankydafish in reply to mhos61]

Thankyiu

[Wyebird]

No I started 500 mg a day for a week that did nothing so it doubled. Anyway once your platelets drop they will lower your dose. I’m sure you will feels loads better pretty quickly.

[Frankydafish in reply to Wyebird]

Thankyou

[Searcher56]

I was on 2 x 500mg to start off with. My platelets were just over 1000. At first I did not notice any difference but after a few months my platelets came down to under 500 and then I started to get side-effects. I am a patient at Guy's and the agreement with the haematologist is that I will take 9 tablets a week and try to keep my platelets below 700. I believe that the body produces these platelets for a reason and trying to lower the platelet count too much is not good. I said as much to the haematologist. I don't have any side-effects other than mild fatigue and there could be a thousand other reasons contributing to that. I have suffered from a mild back-ground fatigue ever since I was a teenager but I still managed to go to work and raise 2 children so I am not too worried. I recently started running or trying to, more like running and walking alternately, building stamina gradually and also doing some strength exercises. I am attending exercise classes at the Therapies and Rehabilitation Unit at Guys. They have proper gym equipment there and it has been a revelation. I never been to a gym before, and I discovered that it is good to push oneself a bit.

[Frankydafish in reply to Searcher56]

Lucky for having access to a gym iv got 2 dogs that keep me fairly mobile as they just dont stop lol thankyou for the support

[Texas2018]

I was recently diagnosed and put on 1000 mg per day. To help with potential fatigue i take in late afternoon and before a meal. Tolerating it well went from 1200 count to 272 in that time. I see heamo every two to three weeks.

[Frankydafish in reply to Texas2018]

Thankyou

[Frankydafish in reply to Frankydafish]

Fir youre support