Morning everyone
I was diagnosed with et 18 +months ago. My consultant just increased my hydorcobmide pills too 2 Monday to Wednesday and 3 Thursday to Sunday
Can only one tell me if that’s a high dose. I have no problems at the moment and feel surprisingly well still working at 72 Regards instow 1
Is the consultant concerned about your blood tests?
You really didn’t give us much information. How high are your platelets? Have they been increasing? Do you have the jak 2 mutation? Doctors usually don’t increase medication unless there’s a reason.
They were 430. Increased to 560 I think I have jak 2 mutation I try not to pay to much attention Otherwise my anxiety is very bad and I had no one with me when I had results first time Thanks for replying
It’s normal to have anxiety. We all have experienced it at one time or another. But you do you learn to live with the disease and all the ups and downs that come with it. 560 is not that high. In fact, I would be really happy to be able to get to that number. I agree with EPguy that if you’re feeling OK on 1000/day dosage and your platelets are pretty stable then I don’t see why the doctor wants to increase your meds. I also agree with Hunter that it would be helpful if you found an MPN specialist.
I wish you all the best.
I don't think you're on a high dose. It's all about what you need to tamp down the problem, and how your body is tolerating it. If you're not having bad side effects and your blood numbers are good, then you're good.
I found it very anxiety-provoking when I was first diagnosed and put into this new, strange world. My way of dealing with that anxiety was to inform myself by reading all the medical papers I could understand. What I got out of that was MPN is generally a slow-moving disease. Blood tests and symptoms provide warning signs for doctors in time for needed medication adjustments. And, overall, it reduces life expectancy by about 18 months (my own generalization from many papers). But most people live normal lifespans--and, like you, they live normal lives.
All that said, I agree with the thought of finding a specialist--if only to just review what's going on and then return care to your consultant.
I hope you can find a friend or family member you can open up to. You're not invincible and neither is anyone else. Half of anyone over 60 has something going on and it goes up from there. Probably someone you know would appreciate having someone to talk to about their concerns, too.
She said she wasn’t concerned
Sorry that there is not enough information to really answer your question.
Here is the HU standard dosing for ET
*thrombocythemia, essential
[15 mg/kg/dose PO qd]
Info: titrate to control platelets and maintain WBC count
online.epocrates.com/drugs/...
We can't really say why the doc would have increased you dose in that pattern. A few key things to know. It is normal for platelets to vary by as much as 100 in a single day based on what is going on in your body. It is the trend over time that matters, not s single fluctuation in the labs.
There is no linear increase in thrombosis risk between 430 and 560. When cytoreduction targets are used, some MPN experts now use 600 as the target.
silvermpncenter.weill.corne...
The goal in treating ET is to control symptoms and reduce risks. Using the lowest dose possible to achieve these goals is good medicine as all of the treatment options do carry risks. The higher the dose, the greater the risk of adverse events. This risk has to be balanced by the benefits in each person's case. We each respond differently to the meds and have different treatment needs. That is why it is so important to consult with a MPN Specialist rather than a regular hematologist. mpnforum.com/list-hem./
If you want to do a bit more reading about your options, here are some resources.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
Hope that helps
We've seen doses from members here ranging from less than 500/day up to 2000/day, and beyond these limits too. So you are in the range of what Drs are prescribing. You say you are tolerating it well, and if this dose keeps your blood numbers where your Dr wants it to be then your current dose seems good. If your dose needs keep climbing you may want to discuss with the Dr why that is so and at some point, alternative treatments.
I started at 1000 and it worked too well and I felt lousy. At closer to 500 I felt better. As you read here, it is quite individualized.
My consultant has said he is happy as long as platelets are under 600 so maybe yours is trying to find a dose that suits you at a level they want your platelets to be. There is a lot of trial and error with medication and doses will be changed periodically as our bodies change. If you feel fine, then take that as a win and monitor how you feel with a higher dose and report back to your consultant.
What is a high dose for 1 is a maintenance dose for another. Good luck
Hi, I used to be devastef every time my meds went up. In my opinion no you are still on a low dose. My meds eventually went up to 17 Hydroxicarbomide and 9 anagrelide a week before I eventually change to Peg interferon.
As a matter of interest do you live in Instow? If so Mr Veale at Barnstaple hospital/Exeter hospital is a great Mpn specialist. I take hydroxy too. I find the department for haematology very helpful if I ask questions . Good luck with your Mpn journey.
No I don’t live in instow. But our favourite place for a holiday thank you very much for your reply
I live near Instow . Nice place to visit . Good luck with your treatment. Try not to worry too much. I try and just get on with each day as it comes. Try not to Google too much.
Your medication dose is based on weight/ platelets. I at one point I was taking 4 x 500gm caps per day. Now I’m taking 3 capsules Monday to Friday and 4 on Saturday and Sunday.
My husband takes 3 pills every day and an extra pill 3 days a week.
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Hopeless due to my MPN
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