Not taking medication

[indy22]

Is it ok just to stop taking hydroxycarbomide? I have and now worried!

I have an appointment on the 1st of May to change to rux my bloods have always been not to bad never going over 600 .

I have Mylofibrosis early stages I am 63 year old

[ainslie]

it’s not wise to stop your meds without your docs approval

[Mazcd Partner MPNVoice]

hi Indy22, you do need to check with your haematologist before stopping or changing the dose of any of your MPN medications. Don't wait until your appointment on 1 May, call the department and ask for some advice. Best wishes, Maz

[brightlys]

I agree with others, it's not wise to stop taking medication without informing your doctors. Probably a good idea to just call and let them know.

When I was temporarily taken off HU for a week in 2021, my platelets increased to 1.5 million (the level they were at diagnosis) in about 9 days. All of my symptoms that has subsided on the HU came rushing back.

If your platelets were significant lowered on the HU, you may find your levels increase again while you are in-between treatment.

[Arthandiwe]

Hi Indy22, I have early stage MF from ET and recently my doc took me off Hydroxyurea and my platelets shot up to over a million, just like Brightlys. I have been monitored the whole time, and am now on Jakafi. So I would agree with everyone else, that it would be best to contact your doctor. I hope you find the best treatment for you soon.

[brightlys in reply to Arthandiwe]

Out of curiosity, were you warned that your platelets would increase again?

I ask because the hemotologist (before I saw an MPN specialist) I was seeing when I was temporarily taken off HU did not realize it could happen and shocked 😂 so I had no warning and my ET symptoms skyrocketed!

[Arthandiwe in reply to brightlys]

So my doctor is a specialist in MPN’s (at MD Anderson, which is a cancer hospital/treatment center in the US, which I am extremely fortunate to live close enough to go to), so he did say that it isn’t unusual for my blood counts to go back up. I was surprised how fast they went up and how high they went. Are you seeing a specialist with MPN’s? I am British, and know that it isn’t always easy to see a specialist with the NHS, let alone a specialist within a specialty area, but if you can get to see one, I would recommend it as your doctor should have known that.

[brightlys in reply to Arthandiwe]

I am now! My situation happened a few years ago when I was only seeing a regular hematologist. I was just curious because I remember the regular hemo being completely shocked but then later I found out it's pretty normal for HU.

[Arthandiwe in reply to brightlys]

Yes, I found that unless you see an MPN specialist they’re pretty clueless. I switched from a regular one in 2022 as he laughed at me when I said how tired I was, told me I was only slightly anaemic and shouldn’t be so tired. He made me feel stupid. He didn’t seem to know that fatigue is the greatest complaint of MPN’s!

[brightlys in reply to Arthandiwe]

Neither did my old regular hematologist!! He also didn't know that HU caused fatigue as a side effect too and it caused issues because he kept raising my dose until I was really sick from side effects. I like the MPN specialist I see now. He fixed my HU dose which helped a lot.

[Arthandiwe in reply to brightlys]

Yes, I’m so grateful for my MPN specialist. He never makes me feel stupid for what I feel, and is fully aware of the effects of the meds.

[Arthandiwe in reply to Arthandiwe]

I’m sorry, I just realised you live in the States… it’s Indy that lives in UK, so please disregard that part! 🤪

[Cedra]

As I understand it, HU can reduce your platelet count but has no other beneficial effects. If you stop taking HU, then you should expect your platelet count to rise. That increases the risk of thrombosis. If you are stopping HU because of its unpleasant side effects, then you must balance the increased thrombosis risk against the improved quality of life. If you have a good haemotologist, they may be able to help you with that decision. I took the decision for myself against my haemo's advice but I have CALR (i.e. lowest risk of thrombosis) and am otherwise very healthy.

[DoubleF79 in reply to Cedra]

Hi. I had no idea CALR was the one with the lowest risk. This was never explained to me. I’ve asked for a face to face for my next appointment in 8 weeks as it’s been 3 years since I’ve seen anyone & it’s always a different doc who phones me 😳

[Cedra in reply to DoubleF79]

The JAK2 mutation poses the highest thrombosis risk. MPL is similar. CALR and Triple Negative seem to have a lower level of risk. There are also small differences in risk between CALR type 1 and type 2. I read a variety of papers on the subject and it seemed that CALR patients have a level of risk in the region of 1% per patient year - i.e. 1 in a 100 CALR patients will suffer a thrombosis in any one year. JAK2 is double or possibly triple that figure.

[Ebot]

Hi there

I can testify to the fact that when I stopped taking HU and went on to Rux (just went from one to the other, no break) my platelets immediately began to climb. It wasn’t an issue as they were very well controlled by the HU so were well within range and I was being monitored very closely. I definitely wouldn’t stop taking any prescribed drug without discussing it with my MPN doctors first.

Wishing you well.

[indy22 in reply to Ebot]

I am sure that's the plan for me too straight on from HU to RUX . Before I started HU my platelets were sitting below 600 and was always just taking aspirin. I feel since starting HU my quality of life has went from good to not good at all ! I have only missed couple of days taking HU so I have started taking it again . I think I might say at my next appointment to try not having any drugs accept for aspirin see how I go .

[Exeter21]

I had to stop mine due to bad reactions but still spoke with Haemotology & they monitored bloods until Interferon started. 👌

[Anag]

as far as I know with anagrelide, as soon as we stop the medication, the thrombocytes rise up to what they are without the medication, after just 10 days! May 1 is about 10 days.