Hi everyone I have Et and have been on hydroxycarbemide 9 tablets a week for the last 20 months. As my platelets have increased to 461 my haematologist is suggesting increasing tablets unless the platelets have gone down when I see him in 3 weeks time.
I am interested in trying pegasys and asking for shared care with Guys. I hate the thought of more hydroxycarbemide because of my concerns about skin cancer and more hair loss.
If pegasys works at a small dose hopefully does hair recover. Would I have to have hydroxycarbemide and pegasys until the pegasys starts to work which I understood can take quite a long time?
How long does it take for the body to be rid of the hydroxycarbemide drug?
Lastly if Guys agree to shared care how long roughly would it be after referral for that to happen?
I appreciate your help. Thank you Irene
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Glad to hear that you will have the chance to review your case with the MPN care team at Guys.
One of the issues to discuss would be your treatment goal. There is no linear relationship between the number of platelets and thrombosis risk. It is more complex than that. Some MPN experts have moved away from PLT < 400K as a treatment target. Some use 600K. Some consider the delta (degree of change) to be more significant. This is something to discuss with the MPN Specialists at Guys to ensure you have the right treatment plan for your case.
It is also important to discuss your other treatment goals. There are many other MPN symptoms we must manage. The symptoms can cause significant issues and diminish quality of life. Improving quality of life is just as important as reducing risk of thrombosis. It is also important to discuss the adverse effects we can experience with MPN treatment. These can also have significant impact on quality of life. Your treatment goals and risk tolerance are driving factors in how you decide to treat the MPN.
Hydroxycarbamide has a half-life of 2-4 hours. This means that at least every 4 hours your body will eliminate about half of the drug from your system. It will take longer for your body the recover from adverse effects once you discontinue the hydroxycarbamide. Timing of recovery depends on what the adverse effect was. It took my body about three months to restore to baseline for all adverse effects. Hair growth would take some time to recover. Some have reported permanent changes in their hair texture, though there is no way to predict this outcome.
The MPN Specialist at Guys can do the best job of answering your questions in a case-specific fashion. Wishing you all the best moving forward.
Thank you Hunter for your really helpful reply. I do hope that Guys will take me on as a patient as I’m not a very complex case. I would really appreciate their input on my treatment. My haematologist wants my platelets to be below 400 and I don’t think that’s necessary. Kind regards Irene
My platelets are around the 620 mark but I only take 100mg aspirin daily.
Are you Jak2 positive? That generally has more bearing on whether or not you need medication than just platelet count alone. I am ET triple negative.
I was on Hydroxyurea for several months but discontinued it March 2022 following an adverse reaction.
My platelets dropped by about 100k over the months after ceasing HU and are only now getting back to where they were. That indicates to me that HU stays in your system for quite a while after you stop taking it. My hair doesn't have the body it once did and it doesn't look like it will regain it's former thickness. I don't think that it's obvious to anyone else but I've noticed the difference.
Your current platelet level isn't particularly high but if you are JAK2 positive and combined with your age that would be a reason for your haematologist to want to keep you on medication.
Thank you for your reply. Yes I am JAK2 positive and 71 so need medication. I’m just hoping that Guys might agree that I can try a low dose of pegasys. Best Wishes Irene
Hunter could I ask one more thing please. It’s just been pointed out to me that I’m more at risk as I’m JAK2 positive. Does this mean that I would need to have a lower platelet target? I am a fit 71 year old. I just would like your thoughts please. Thank you Irene
People with the JAK2 mutation are at higher risk for thrombosis than those with a CALR mutation. This does not necessarily translate into a need for a lower target for platelet levels. The risk of thrombosis more complex than just the number of platelets. Your individual risk needs to be assessed by a MPN Specialist who has the depth of experience to provide individualized assessment and care plan. there are a number of factors that need to be taken into account to do this. Note that there is also more to assessing risk than age alone, though age is a factor to consider. We all age differently. Or as my former MPN Specialist stated "65 is the new 35." I really liked that doc!
You are asking excellent questions. Wishing you success in getting them answered when you are seen by a MPN Specialist at Guys.
I hope you get started with Guys, they are excellent. I doubt Guys will be concerned about your current platelet level unless you are symptomatic or have other risks, most experts won’t treat platelets unless over 1 million or as I mention above. As you probably know switching from Hydroxy to Peg can have its pros and cons, that’s a good discussion to have with Guys. Some people also have hair issues with Peg though. Not skin cancers and of course there is possibly some disease modification with Peg for a subset if tolerated although doctors have different views on whether it can modify disease. I would be inclined to agree that a higher dose of Hydroxy if you don’t need it makes no sense.
Thank you for your reply. I’m 71 so unfortunately considered high risk although I’m pretty fit. I hope that Guys will agree a higher platelet count for me so that medication can be kept low. Kind regards Irene
I am 71 years old and was diagnosed approximately 11 years ago with ET Jack 2+. I did not need to start medicating until the beginning of Covid, which was just coincidental and had nothing to do with Covid at all. in America in my blood work it considers anything 450 and under it to be normal for platelets. I hope you get to see a specialist at guys. as Hunter said it is worth it to weigh symptoms versus platelet counts. I have Always opted for the lowest dose of medication so that I can feel like myself…. this is not necessarily the right decision for everyone. I am also healthy and fit, although certainly over the last few years I have had less energy, but still out swimming or hiking daily.
please keep in mind that even if you cannot see the specialist,nthis is your body and your decision and hopefully your doctor will be on the same team as you so that you can find a Medication and dose that you feel good about.
I eventually switched from hydroxy to Pegasys, but that is because I was having severe nausea and exhaustion on the hydroxy. I was happy with hydroxy for as long as I was able to tolerate it.
Wishing you the very best. I am sure you will be able to get all of this sorted out.
There are several issues here. Sounds like you want to switch to pegasys because of hydroxy side effects. I am 71 with PV and this is an option for me as well. But all these drugs may have side effects and I am trying to assess which is the best bet. You have to try and find the medication that is right for you. As for the platelets, like other contributors, I am a bit surprised at your doctor's concern to increase hydroxy at this level of platelets and would want to see what happens over the coming months before increasing the dose. But of course I am not a doctor.
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