Skipping days !

[indy22]

Was told to reduce days of taking medication, instead of 7 days at one Hydroxycarbamide a day I have now to take one five days is this normal procedure? My platelet levels are normal and red/white seem to be behaving themselves , still suffering side effects though !!

[Mazcd Partner MPNVoice]

hello Indy22, yes, the dose regime can be changed, particularly if you are getting side effects, to see if a change of dose will help. Best wishes, Maz

[hunter5582]

Mazcd already covered it re. the dose. We are each different in how we respond to HU. Different people need different doses. Some tolerate it fine. Others do not. I did not. I experienced significant toxicity even on the every-other-day dosing. I had to discontinue it. The good news is that there are are other options. I have done much better on PEGylated Interferon. All hematologic target met with no adverse effects at a very low dose. Not everyone responds to PEG as well as I have. We are each different in how we respond to PEG too. This is part of why it is so important to ensure that you have a MPN Specialist rather than a regular hematologist monitoring your case.

Hope you get it all sorted out ASAP.

[indy22 in reply to hunter5582]

Hi thanks for reply , I have never seen an MPN specialist!

[hunter5582 in reply to indy22]

MPNs are rare disorders. Most hematologists do not have the KSAs to provide optimal MPN care. It is worth doing whatever it takes to consult with a MPN Specialist. Here is a list.mpnforum.com/list-hem./

[Penpal21 in reply to hunter5582]

Thank you for posting this link.

[Jennytheb in reply to indy22]

Hi, I have never seen an MPN specialist either, have an extremely efficient haematologist. Thanks, once again, hunter for your info. See my nearest specialist is 4 hours away in UK. Why so few specialists I wonder.

[hunter5582 in reply to Jennytheb]

MPNs are rare disorders - hence MPN Specialists are rare. My MPN Specialist is 2 hours away. I also have a wonderful local hematologist. I travel 2x/year to consult with the MPN Specialist who consults about my care. The local hematologist handles the on-going care. This arrangement works great.

[RCBr in reply to hunter5582]

Hi Hunter,When you talk about the HU toxicity, what exactly did you experience? I'm currently on 8 per week, but still experiencing problems, especially with parasthesia and fatigue

[Oscarsboy in reply to RCBr]

I too suffer with the parasthesia most of the time. Tried increasing the aspirin on recommendation, but that in turn has itw own issues.

[hunter5582 in reply to RCBr]

I experienced a compromised intestinal endothelium (constipation), raw bleeding ulcers in the mouth, return of canker sores after a 20-year absence, thrush, leukoplakia (dyschromia of the tongue - tuned it white as snow). These adverse effects continued despite dropping the dose to 500mg every-other-day. HU also did not do a good job controlling the erythrocytosis and I had to go to phlebotomy every three weeks for about 5 months. Then we overshot the mark and I ended up with HCT = 32%.

It took about 3 months for the adverse effects of the HU to clear. My tongue never returned completely to normal. Now have geographic tongue,

The MPN Specialist took me off HU immediately when I saw him. He had a concern about the mutagenic potential. I also have NF1, which increases my risk of leukemic progression. Since secondary leukemia (long term use) is one of the listed adverse effects of HU for people with MPNs I decided that HU was not in mu best interests.

I would note that in your case fatigue and paresthesia can both occur because of the MPN. They can also occur because of the HU. This makes it hard to sort out. The best clue is when the symptoms began. Was it before or after the HU? Does reducing the dose reduce the symptoms? Does discontinuing the HU eliminate the symptoms? (Note that it can take a while to see a change with some adverse effects).

I would suggest reviewing you concerns with a MPN Specialist. The good news is that if you cannot tolerate HU there are other options.

Hope you get this sorted out ASAP.

[indy22 in reply to hunter5582]

Wow that's a lot to digest ! I got mouth ulcers and my hematologist said she might change my medication , I have heard that she has now left so next visit will be someone new again so it will be interesting to see what will happen next..........or will it ?!! 🤔

[hunter5582 in reply to indy22]

Well interesting would be one word to use. Most Hematologists do not have the KSAs to provide optimal MPN care. If they have assigned you someone new then suggest you be sure to treat it like a job interview. The doc does after all work for you. "How many MPN cases have you treated?" is a reasonable starting question. Do not assume the doc has the optimal MPN KSAs that you need. Unfortunately most do not have the knowledge you need for optimal care. That is why it is so important to consult with a MPN Specialist. Here are some lists just in case you have not seen them.Worldwide mpnforum.com/list-hem./

USA-only pvreporter.com/mpn-speciali...

Regarding the mouth ulcers, they should no just be ignored. They can be quite painful. In my case it started with the ulcers then progressed to thrush and leukoplakia. I became concerned with the risk of oral carcinomas which can occur with HU just like dermal carcinomas. Not to say that will happen, just that it is a known risk.

The good news is that there are other option. We each benefit/tolerate the meds differently. Hope you find the right choice for yourself ASAP.

[indy22 in reply to hunter5582]

I see an MPN in my area do I have to pay to see him privately? It looks like he goes to a private hospital not NHS!

[hunter5582 in reply to indy22]

Not sure about that as I am in the USA and our insurance works differently. From comments others have made, some MPN Specialists work in the NHS while others are in private-pay practices. What some (myself included) do is consult once or twice a year with the MPN Specialist to make a care plan and have the care plan executed by a local hematologist. This arrangement works quite well for me.

[IrishHiker]

I am now down to Monday, Wednesday and Friday. This is to reduce my side effect of shortness of breath and it is working plus so far my platelets are good.

[threedog]

Hi, I also am down to 3 HU a week from 2 twice a day.

[nightshadow]

I am glad to see people being able to reduce their HU intake! Hope your levels stay good with the lower dosage.