Four months ago I was diagnosed with ET JAK2 positive with platelets 689. I started on one tablet daily but after six weeks my platelets were 537 so tablets were increased to 9 a week. Eight weeks later they had only gone down to 495 so my haematologist suggested I increase the dosage again as they should be under 400. I resisted as I’m worried about more toxins going into my body so we agreed to discuss again at my next appointment in two weeks time. He did say nine tablets a week was below the average dosage. How are doing on higher dosages? At the moment I’m fine apart from a more active bowel but I am frightened of increased side effects. Once upon a higher dose is it ever decreased? I’m just looking for reassurance.
Thanks Irene
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Hi, I took hydroxycarbomide for 2 years starting with a low dose and eventually on 16 tablets per week. Side effects were similar to yours in that there was a change of bowel habits , and I had sporadic clusters of mouth ulcers, also progressively more fatigued but that might have been the illness and/or age. Apart from the fatigue I don't think the side effects worsened as the doseage increased (how does one ever know if it's the disease or the medication) and it was very effective controlling my bloods but it didn't do anything for the pruritus which was my main and most debilitating symptom. I switched to Ruxolitnib 1 year ago.
I’m taking Hydroxy every other day. Platelets slowly decreasing . Now 580 from Just over a 1000 when I started a few months ago. I’m happy to take it slow and steady and have discussed my wishes which hospital who would prefer me to increase meds.
I have regular blood tests and if needed am open to changing my mind.
Go with your gut instinct. Monitor symptoms and have regular blood tests .
I take 4 a day and I’m on 400mcg of Besremi. I just have lots of fatigue and get occasional mouth ulcers and some extra bathroom trips .I’ve been taking them for about 5 years and I’m 52 years old , hopefully will get weaned off when my platelets fall into the normal range .
Hi William indo, because my platelet count was not going down , I started Besremi in January with counts in 900’s and on three hydrox, then they climbed to 1.3 million by May so Dr was concerned with them going higher now they are in 500’s. Once they reach 400’s he will slowly remove a pill at a time while continuing to increase Besremi although I’m at 400 mcg already . I have very stubborn platelets .
Hi Soledad,I agree with you but I’m following my mpn specialist orders and this is what he is telling me to do until my platelet count goes into normal range. I had discussed with him that I should of been weaned off the hydrox pills by now but he says I can’t because my numbers were not coming down . I’m very concerned about taking so much medication but he says I’ll be fine.
Reading the Package leaflet: information for the user in the point 'Other medicines and Besremi', you can read it related to hydroxycarbamide. You should ask for a second opinion to an MPN expert. I understand you.
You are correct that there can be overlap between titrating off HU and finding a therapeutic dose of Besremi. The goal is of course to discontinue the HU altogether but it can take some time for the Besremi to become fully effective. Hopefully you will find and tolerate whatever dose of Besremi will be effective for you.
Are your other blood count (HCT, WBC) in normal ranges? HU goes after those along with PLT so they may also be decreasing. If PLT is the key target, Anagrelide is specific to that. I'm sure your specialist has opted for HU over Anagrelide for good reason.
Bes can go up to 500, as they did for some in the trials, so you've got a bit more room there. As you say, the Bes should take hold in time and allow reducing the HU.
Eventually we hope Bomedemstat will be available, this is a modern treatment that is looking good for PLT in trials.
My hct is 29.7 and wbc 3.5 , doctor says it’s ok for now nothing to worry about that’s it’s all the meds I’m on. I have been having bloodwork every two weeks since January. I hope to be able to tell you soon that I will start the weaning process, Thanks always for your great information and concern. Stay well!
That HCT does stand out as unusually low, it is clear your Dr is going hard to get your PLT down. Has Dr discussed Anagrelide or ruled it out clearly? It could allow the HCT to normalize while acting on the PLT till the Besremi takes hold. Again no 2nd guessing Dr, but we are always entitled to ask them reasonable questions.
When I was on Hydroxycarbamide, my dose would vary according to my blood test results. At one point I was on four capsules a day (this was years ago, I don't think that would happen now) but it was reduced again quickly as the mouth ulcers were very frequent. On lower doses, I had no side effects. I wasn't especially fatigued and lived completely normally, not needing to think about ET at all.
Has your Dr explained what's the urgency? Here is my PLTs after I started HU. I had an urgency being well over 1000 to start. As you can read on posts here and in reports, some Drs consider 600 to be an ok level and 450 is a common goal. It depends on whether other factors are putting you at risk, for example a sudden large increase in PLT or other health conditions. No problem on any sudden increase for you.
You're right 9/week is fairly low and the steady reductions you're getting with that is good.
But don't forget your other counts, HU can lower your WBC and HCT too, and if you don't need those lowered you want to watch them, esp if the dose keeps going up.
At April 2021 we reduced mine to 500 since I felt lousy on the 1000. Then I added a bit later that year. Note it took me 4 months to get it set. As Otterfield says, you can adjust your dose per your blood tests. But if I were steady on downward progress, as I was back then and you are, I would not increase dose any more absent a specific reason from Dr.
At least your Dr should explain whether/why you have such urgency or risk to rush like that.
Thank you for your reply. My haematologist says that platelets should be below 400 . My husband and I were both diagnosed with ET at the same time and we share our appointment. Dave has responded better to the hydroxycarbemide and his platelets went down to 330 six weeks ago so the haematologist might be comparing his progress to mine. I ask about my blood counts each appointment and I’ve been told they are fine. If my platelets have dropped a bit more I’m tempted to stay on 9 tablets a week and review in a few months. Kind regards Irene
You should ask for a copy of your blood test results, I get a copy in the post after every 3 monthly clinic. My platelets are around 495 and I take 1 hydroxy per day, they are not increased as my wbc level is low. Good luck with your ongoing treatment.
Yes I’m still learning about blood counts and so far have just asked the haematologist if they are fine. Thank you for your good wishes and same to you. Irene
Just for information I was told since 2016 my bloods were fine. It rose to 590 & still told fine . I discovered I had ET after asking for tests . That was March 2022. I was left with no treatment despite being over 60. As soon as diagnosed they ignored I had no symptoms & gave me HU. However I had been 7 yrs over 60 no problems. Now HU got me to 420 that seems their target. I would be happy on aspirin only if it doesn’t rise . However it inevitably will as cannot be cured it appears or helped with no drugs.
I agree your husband's progress is probably a distraction that should not read on yours. Quite a coincidence your both have ET. As long as your PLT continues downward on the 9/week, it seems you're getting the desired response, just not as fast as some others. I also agree that adding more HU to make this go faster does not makes sense in my opinion.
Incidentally my provider uses 369 as a PLT limit, that's the lowest I see anywhere. But my MPN specialist does not worry about that.
While HU seems to be working for you at a modest dose, there are good arguments for PEG, it can stop progression and reverse disease in some cases while HU is not known for that.
Hi there. I’m on 3 tablets a day, the dose having been increased gradually over the last four years. The good news is that I’m having very few side effects now - they seem to have diminished over time. Unfortunately my platelets are being very stubborn and aren’t a lot lower than they were when I was first diagnosed (in the 600s) so there’s now talk of potentially trying Peg Inteferon, although I have been warned that the symptoms from that can be rather unpleasant.
I’m glad you’ve been well on 3 tablets. I’ve been wondering about peg interferon in the future. What drawbacks have you heard about it. I thought a lot of people on this site thought it was good but took a while to work. Kind regards Irene
Every doctor that’s mentioned it has asked whether I suffer from depression as that can be a symptom, alongside fatigue and hair loss. Those were the main three each practitioner has mentioned. They did also say that most patients suffer side effects for a few months and then tend to improve so I’m keeping fingers crossed that happens to me should I have to go on it.
I’m not really, but as Hydroxy is having no effect I suspect I shall have to try. The good news is that when I started on Hydroxy I had terrible fatigue but that gradually went away and apart from the very occasional mouth ulcer and occasional bleeding gums, I have no side effects from it whatsoever. I’m hoping that will be repeated!
Good morning. I am a matching story .I started at a low dose of Hydroxy and then have risen to 11 tablets weekly. This has done the trick for about 4 years and I hold my platelets just under 400 usually. I too have reported the trouble of a loose bowel , not so easy in the mornings!!I have asked my work place if I can come in just a little later as it makes it worse if stressed. This has really helped.
Hope you are ok otherwise I am doing well, next bloods just taken and hospital appt next week. Please feel welcome to correspond. I have a lovely haem team who I can phone if needed and have bloods checked every 16 weeks.
I have ET (triple negative) and on aspirin only because I also have MDS, where my haemaglobin cells are insufficient. My platelets are coming down from about 600. I have my blood test on 15th (My partner has his podiatry appointment at exactly the same time and place - yippee - no extra driving!) I always get my results online within hours.
Feeling more wobbly than usual and falling asleep in the afternoon - blame it on pregabalin which I take for other things. I wonder whether having identified a faulty gene makes a difference to any symptoms compared to someone who has no apparent faulty genes.
That sounds very high dose. I couldn’t cope with hydroxy even though only 5 per 7 days of 500mg . After 6 weeks I looked & felt horrendous with grey skin. Also food went straight through my body. Took me off it immediately I complained . Platelets had come down to 440 but I have been left on aspirin only currently as my usually healthy body & fitness was wrecked. May I came off it & currently well fit & lots of energy. I am now trying to see an MPN expert & have researched all drugs available for ET Jak 2. I am 67. Ask for another opinion. Our bodies are all different & for me that drug wrecked my normal life.
You have certainly had a bad time on hydroxycarbemide . I’m fine up to now on the 9 tablets a week apart from a little extra bowel activity. I can put up with that. Do let us know how you get on with your next treatment. Hope all goes really well. Kind regards Irene
I started on daily HU about 6 yeras ago; platelets remained high so the does was increased to 9 pills per week and then 2 per day. This led to serious skin reactions so I am down to 3/week and will soon give it up in favor of ruxolitinib.
Irene, a steroid cream helped to heal the skin lesions. and they haven't returned with HU at three times a week. However, I am soon to replace HU with ruxolitinib. We'll see how that goes. Sincerely, Stephen
I would think that your concerns about an increased dose of HU are reasonable as adverse effects with HU are dose dependent. Unfortunately, GI effects are pretty common with HU. I experienced the opposite problem - constipation. This continued even when we reduced the dose to 500mg every other day. Due to this and other adverse effects, we discontinued the HU altogether, It took about 3 months for my body to return to normal.
Suggest reviewing your treatment goals with a MPN Specialist. There is no evidence that there is linear relationship between risk of thrombosis and a specific number like 400. Some MPN Specialists now use 600 when a specific number is used. Others are now thinking that it is the delta (degree of change) that matters more than any absolute number. Other MPN Specialists also indicate that the specific target for platelet level may vary by patient.
There is agreement that managing actual symptoms (beyond thrombosis risk) is also very important. Dealing with the risk of hemorrhage, microvascular symptoms, and secondary/constitutional symptoms is equally important.
The good news is that there are MPN Specialists with the knowledge, skills and abilities to provide optimal care for MPNs. These more specialized hematologists are more aware of the current state-of-the-art in MPN treatment. The further good news is that there are more options than HU to treat ET and the other MPNs. Pegasys is the other first-line treatment option for ET. There are also second-line treatment options like Jakafi and anagrelide. In additions, Besremi and Bomedemstat are currently in clinical trials for ET.
Suggest reviewing what your treatment goals are, defining clearly what your risk tolerance is, reviewing your primary and secondary treatment options, then deciding what your preference is. This would best be done with a MPN Specialist rather than a regular hematologist. Just in case you have not seen it, here is a list.
I’m afraid there is little alternative I in the end tolerated 17 hu and 9 anagrelide a week. You are on an extremely low dose. In my 2nd week of medication I was on 2 a day.Let’s hope your new dose will be sufficient. Once those pesky platelets are under control you might find the dose will be reduced.
Try not to beat yourself up if it goes to 14 . I wasted an awful lot of quality time feeling sorry for myself and trying to fight it. You can’t I’m afraid.
Our situation looks very similar in terms of diagnosis and treatment. I was put on 14 tablets a week after my platelet level plateaued at the 7 tablets a week dosage. I was still seeing the doctor every other week at that point and the platelet level dropped to mid 300's. but I found the fatigue to be overwhelming. I asked for the dosage to be cut back and I am now on 9 tablets and my platelets have been steady. So yes, my doctor did decrease the dosage for me.
It may be possible that the initial higher dosage knocked the levels back and then the level can be maintained with the lower dosage. but this is sheer speculation on my part. It might be worth asking your doctor if he is willing to give it a go.
Hi Irene, your post just showed again. I am 78 and newly diagnosed with ET JAK2 in June 2022. Platelets jumped from 621 to 735 first visit with hematologist. She put me on 500 mg daily Hydroxyurea. I had daily headaches so she took me off it for a month (I am already on a blood thinner for AFib). I was started again but 500 mg HU every other day.
My platelets deopped to 498 after first month and 434 after second month of every other day. Her goal for is 450 or less. hope I can continue every other day as I feel better and headaches are less.
It seems that everyone progresses at different speeds. I really understand your hesitancy.
Thank you Eileen for your reply. I see my haematologist in February and will discuss any increase in tablets then. I’m hoping my platelets have decreased. All the best Irene
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