Disappointed

[sweetpea19]

After losing weight and trying to be healthy my platelets went down to 356

This blood test 3 months later has seen them rise to 579

Should I be concerned..? I have a telephone appointment next week with my heamotologist I know she will suggest increasing my hydroxy as she has hinted at it before and I’m not keen. I’m on 1,000 mg a day

I’m a little stressed about it

Thankyou

[hunter5582]

Sorry to hear about the worry about the increase in thrombocytosis. A few factors to consider include:1. It is normal for platelets to vary by as much as 100 in a single day in response to what is going on in your body. Inflammation, injury, bleeding, illness can all cause reactive thrombocytosis.

2. It is the trend over time that matters. not a single lab read.

3. Some MPN Specialists have moved the target for cytoreduction to 600. The short version is that there is no evidence to support that keeping platelets under 400 significantly reduces the risk of thrombosis. Do note that higher (>800) platelet levels are associated with risk of hemorrhage. Some people do find that they feel better when their platelet levels are closer to 400, but this may have more to do with factors other than platelet levels per se (e.g. inflammatory cytokines). silvermpncenter.weill.corne...

4. The risks of adverse effects from the HU increase along with the dose. You have to weigh the benefits of any medication against to risks when deciding when to use them and how much to use. This decision is up to you to make. Your hematologist makes recommendations. You make decisions.

You do have multiple options. One is just to maintain your currently dose and monitor providing there has been no increase in symptoms. You can also choose to increase the dose of HU is you feel that is in your best interests. You can also consider changing your treatment plan and opting for a different medication if it seems you are refractory to HU at a dose you can tolerate.

The other first-line treatment option for ET is one of the PEGylated interferons (e.g. Pegasys). There are also second-line options like anagrelide and Jakavi. In my own case, I could not tolerate HU. I found PEGylated interferons to be both more effective and much easier to tolerate. Note that not everyone has that experience. We are all different in how we respond. The choice of which medication to use, however, is for the patient to make.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Congratulation on the weight loss and healthier lifestyle. There is no question at all that it will benefit you and help with managing the MPN. This will absolutely reduce your risk factors.

All the best.

[sweetpea19 in reply to hunter5582]

Thankyou so much for your very informative reply I will discuss my options with my haematologist and maybe suggest another blood test in a month to see if there is a change in my counts

She is a little “ old school “ with her approach and doesn’t think a lot of symptoms are associated with ET and seems to concentrate on numbers a lot

I’m changing hospitals soon so hopefully will get a different opinion on things

Thanks for your help

[hunter5582 in reply to sweetpea19]

It would be a really good idea to consult with a MPN Specialist, particularly if you are changing providers anyway. Many hematologists are just unaware of how MPNs can manifest in so many different ways. They are just not up-to-date and do not have the KSAs to provide optimal care. Just in case you have not seen it, here is a list.mpnforum.com/list-hem./

[sweetpea19 in reply to hunter5582]

Thankyou For the link. I haven’t seen it before

[Wyebird]

I used to be devastated every time my meds were increased but take solace 1.000 a day is a low dose.

[sweetpea19 in reply to Wyebird]

Thankyou for your reply and support