I am just wondering if anyone else has experienced Hydroxy not working as well after a time?
I have been only taking it for 2 years now and all seems to have been going well until a couple of months ago when my platelets started to rise again. I have had another visit to consultant today and they are now slightly higher than before I even started these meds 🤷♀️ which has worried me somewhat .. I did question this and his answer was … this is the way this disease just goes !! So I now need to up the meds at the weekends as trial and error .. to see what happens on my next blood test
I would be so very grateful to hear if this has happened to anyone else or if anyone may know a reason why this might happen? I do feel concerned about this now as 2 years just doesn’t seem that long for things to start going wrong ?
Thank you for any help you may have to offer me x
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Yoganana1
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My Hydroxy dosage was upped from 1 x 500mg 7 days a week after two years to 1 x 500mg Mon-Thurs & 1000mg (Fri, Sat, Sun) I've been on this dosage for about 18 months with all blood levels stable.
I have seen that some take 1000mg daily and I've also heard that some people develop a resistance to the drug after many years of taking it.
Personally, I will continue to take it for as long as possible as I don't suffer from any side effects from taking it and all of my other blood levels are within normal range. I have PV.
Saying 'This is the way this disease goes' isn't very helpful - I would ask for a more detailed explanation.
When my dosage looked like it needed to be increased my Haem first suggested I try drinking more water, he also brought my next appointment forward. It was only after he was convinced that he increased the dose.
Sorry I can't offer any real reassurance. My only suggestion would be to speak to your medical team.
Thank you very much for your reply, it’s at least reassuring to hear that this is not just me .. he was a very nice calm consultant but just kept referring everything back to me .. ‘what would I like to do’ well unfortunately I’m not the expert so I would really like some advice 🤷♀️
Thank you again for your help and I wish you all the very best going forward with your health x
I have been on Hydroxy for about 6 months now. I started on the dose of 1000 per day and that brought my platelets down to 300. I couldn't cope with the side effects, so we had to reduce the dose to 500 per day. Since then, my count has increased to 700. It was 1100 before I started the treatment. I suspect my hematologist will ask me to go back to the higher dose, which I am not keen on.
I have been told many times by 4 different hematologists that my platelet levels will vary naturally as well (within limits).
I had them jump up and down from month to month (usually within 200-300 range) even before my treatment.
I’ve been on 1000mg Hydroxy Mon &Tues and 1500mg We’d to Sun I’ve just recently been told to take another 500mg on a Tuesday because my platelets have increased slightly!! Isnt it strange we are all being told this just now!!? It makes me wonder about the actual tablets!? As it’s a strange coincidence that many are saying the same at the same time !!?
I've had the opposite response. I've been on 500mg daily for about 2.5 years. My hemoglobin & hematocrit went below normal so a couple of months ago decreased to every other day. They're now at the low normal range so trying every 3rd day. Not sure what any of this means .
Your hit the nail on the head, so I want to suggest that if you don't have an MNP specialist, [not a generalist Hem/Onc Mu may want to at least see one as a consultant.
That's what I did when my local Heme/Onc MD admitted that she hadn't seen anyone with an MPN since medical school.
...and once my dose of Besremi [interferon because I had too many side-effects from HU] has been stabilized [likely 7/24], I'll be going back to the local folks for ongoing management.
If the MD you're currently seeing has a problem with you wanting an expert opinion, they need to get a grip- it's common practice with rare diseases like ours [I have PV...]
Best wishes,
PA
PS: Please let's refocus and rephrase from "suffering from" to: living with, surviving, or kicking butt and taking names! 😎😀👍
Your concern is understandable and worth monitoring. However, keep in mind there are any number of things that can cause an increase in platelets including infections be they serious or benign. I was diagnosed with pv a little over 4 years ago and it was initially treated with phlebotomies. I've been on hydroxy for almost 3 years. The initial dosage was reduced because I couldn't tolerate it. Finally settled on 1000 for 3 days/week and 500 the other days. It has kept my numbers in a good range, and other than some fatigue late in the afternoon, hasn't been a problem. The other thing I did was change doctors and that made a profound change in how I felt. I also found out the hard way the importance of water consumption so I now drink a lot before I start my day. That has solved a lot of problems including dizziness.
As is often pointed out here, we all respond differently to the medications/treatment for this disease. The key will be to find the balance that works for you. Trust me - you will find it.
I did wonder about the fluids, I have always been so good with that side until a few months ago (find it harder in the winter) and I have slipped majorly .. not even getting through 1 litre a day so wondered if this may have been a contribution
I don’t seem to get much information from my consultant, they are oblivious of any symptoms and never give any advice eg. Water intake etc
I have been trying to change but it seems almost impossible lately
I really hope I can get the platelets settled once more without too much trouble 🤞
yes, my platelets started to rise after just over two years so I double the dose at weekends and was advised to continue on that dose as my platelets started to fall again.
Thank you, I really hope your platelets have settled fir you now x
I feel quite anxious about upping the dose as worried how it will affect me with other bloods but seems I have no choice … it’s a minefield to make any decisions I feel
My HU dosage was increased , leading to skin ulcers, but not doing much for the blood numbers. I was switched to Rux about 18 months ago and am doing well. You should really consult a MPN specialist.
Thank you .. I have tried to get further information from an MPN specialist but it’s not so easy unfortunately … I have been on a 14 month waiting list just to see a different consultant and haven’t even achieved that yet
That's really too bad. In my experience, most hematologists don't know much about MPNs. I was diagnosed with PV in 2015, when I was 71. I went on HU a year or two later, but lack of response (i.e. still needing regular phlebotomy) led to a higher dose, which didn't do away with the phlebotomies but caused skin ulcers. I found a MPN specialist at a research hospital (180 miles away!) who told me that I should switch to Jakafi. Even with Medicare (I'm in the US), this was initially very expensive; recent changes in the Medicare laws have brought the cost down, but it's still far from cheap
Would you share the amount you spend for your Jakafi , the dose, and the name of your Medicare supplemental insurance carrier? I'm in Connecticut and travel 90 miles to go to Dana Farber in Boston. My MPN specialist says since the HU is working I should stay on it, but as I age (78 now) I am starting to have more of what I think are side effects. And, after 14 years on the drug, I am worried it is damaging other parts of my body.
I have a Medicare Advantage policy with Geisinger Health. Geisinger is a century-old company that offers healthcare to residents of Northeastern and Central PA. I have a local hematologist, but I consult with a MPN specialist at the University of PA twice a year. Thankfully, we are in the same state, so after one face-to-face visit, we are able to do televisits. On her recommendation, I switched to Jakafi in August 2022. I am now taking 10 mg of Jakafi daily. The Jakafi drug price on my latest monthly statement is $8489.25; that would come to something like $100K for a year. In 2023, Medicare Part D brought this down to something like $8K. This situation has been radically changed by Biden's Medicare drug cost limitations; my 2024 outlay for Jakafi will be about $3300, and starting in 2025, the total outlay for all Part D drugs should be capped at $2K.
Like others on here after a time the amount of Hyrdroxy I am taking has increased. I am on 3days x500mg and 4 days x 1,000 mg. It is expected that your dosage will increase. Keep on keeping on!
A lot of diseases get worse as we age. Try not to be shocked. A calm heart can go a long way in helping one feel better. As the scripture says: "a calm heart is life". Take care .🙏
I was put on Hydroxyurea in 2019 for post ET MF. Pretty soon after, I was diagnosed with COPD ( I never smoked), sleep apnea, pneumonia (hospitalized for 3 days), and other lung issues. It got to the point that I could barely take 10 steps without having to sit down, I was so out of breath. I was getting mouth sores and my spleen enlarged. My doctor told me it was time to get a transplant, and they switched me to Jakafi last summer. That was literally a life changer, and most of my breathing issues went away. My pulmonologist did a follow up CT scan of my lungs and was shocked to see how much I improved. My transplant doctor has put off the procedure now, as well.
I don’t mean to scare you, but I was complaining about the hydroxy for a long time, and the doctors thought I was crazy until I was forced to go off of it.
WOW, that's great that you don't need a transplant now.
I didn't realize HU could affect your lungs that much. I'm on my 14th year on the drug for ET. My MPN specialist wants me to stay on it saying I tolerate it well, but I'm a little leary. I have mouth sores, but my spleen is OK. I'm so tired most of the time and spend most of my day lying on the couch working on my laptop or reading. I'm starting to get short of breath, but no where near as bad as you experienced.
I've had lung issues since I was a child having had whooping cough when I was 5 and bronchitis for many years. I also have recently been diagnosed with sleep apnea. Hoping the CPAP helps with the fatigue. Do you use a CPAP and did it help?
I noticed when I moved from the US Midwest to the Connecticut shoreline my episodes of bronchitis reduced to the point that I haven't had one in several years. I'm told it is the salt air.
Wishing you continued success with your treatment.
I've been on HU for 14 years. For the last 5 years I've been taking two 500 mg capsules a day, 7 days a week, before that it was 5 days a week. That keeps my platelets in the 600-800 range. Once in a while they drop to the 500s. There is no rhyme or reason why they drop. There was one occassion where I missed a day of my medicine and they still dropped, but most times when I miss a day or two, they go up.
Over the years, I do notice that the drug has been a little less effective, but not enough to replace it with something else.
How strange that all these numbers differ to each of us? My platelets are 620 and apparently that is too high 🤔 they said they should be in the low 300’s
It’s so very hard to get any decent advice or help from consultants I feel … an MPN specialist would be best I’m sure but I feel that would be like winning the lottery here !!
I did ask about other medication but was told it can affect the heart and other problems so not good to change ?
Hi, I think a lot of us have our dosage increased. I started of one 500mg per day and then 1000mg on 2 days and 500mg on five days and that seems to do the trick for me. Good luck.
Hi, Thank you for reply and help. Hopefully it will do the same for me too. Do you take them both together or space them out? It seems a lot to do all at once so not really sure?
Yes. The same thing happened to me so I had an increase in dose. You can talk to your provider about what the range is and why people may switch to something else.
Thank you, oh really it seems to be quite common by the sound of it but I was so really hoping I wouldn’t have to increase my dose. These pesky platelets seem to have a mind of their own unfortunately
Have you consulted an MPN . I was on Hydroxy did not tolerate it & consulted MPN & tried on Peg Interferon. It has been brilliant . Energy returned platelets & other bloods etc in range. Good luck . Julia . 👌
No I haven’t had much luck with getting to speak to anyone else it seems to be such a trial I’ve tried to change hospitals where there are consultants with more MPN experience but I’m on a 14 month waiting list on our NHS 🤷♀️
Thank you for your reply though and I wish you all the very best
You can search online for MPN Drs & send emails. I had to email as my MPN is 250 miles away . Consultations are by phone I have not seen them in person . My local Haemotology were not forthcoming for me to consult anyone else so you have to just do it. I now have shared treatment at local hospital but with decisions made by the MPN by phone consultations . But only the MPN are experts as most on our Forum will repeat after their experiences. . Good luck Julia .👌
I started on 1500mg a couple of years ago but now see my platelets on the rise. Im guess my specialist will suggest an increase in dosage on my next visit.
Here‘s my story which may give you one or two tips:
I was diagnosed with ET JAK2 after a slight stroke in 2013 when my platelet level was around 560. I was put on Hydroxy plus (importantly I believe!) Aspirin, initially 500mg HU every second day and 100mg ASS daily. As I‘d read somewhere that a good fluid intake is advisable, I trained myself to drink 2 lt of (mainly) water a day. I noticed no side effects from the HU, but at intervals we had to increase the dosage to keep my platelet level down to around 450 which was deemed to be the target in those days. (I understand it’s now raised to 600). So in 2022 I was taking 10g a week. My instinct told me I‘d reached the upper limit! On my request my Haematologist put me on Anagrelide with the consent of my health insurance. Anagrelide is supposed to target platelets, and in my case it certainly did: it brought them down to 252! Unfortunately after a year the side effects were too much and I went back on HU while I considered what to take next. Members of this Forum were very helpful with advice on Rux and Interferon. I started Rux (Jakavi) in February and am hoping for some encouraging results soon…
My Haematologist is not an MPN Specialist but is in contact with one as necessary. He‘s also very open-minded and will listen. I do believe it‘s desirable for patient and doctor to work together. Could your GP perhaps help you to be taken on by an MPN Specialist at some stage? Meantime I‘d suggest you prepare for the next consultation by jotting down your questions beforehand and then sitting tight until you get proper answers! And remember: Drink plenty!
Good Luck in feeling your way forward and take care!
Thank you for your information, it’s very helpful to hear how others are getting on and how they are managing this condition as I’m sure we all feel as though we are the only ones sometimes 🤦🏼♀️
I do feel with the hospital I am under that if I speak about an MPN specialist they look at me as though I am making a fuss about nothing so I haven’t had a lot of luck in that department so far
I will definitely do as you suggest and make notes to try to get some answers but as I said previously the last answer was just ‘this is the way this disease goes’ which isn’t really an answer at all
I have been on Hydroxy now for 17 years and its always a balancing game re platelets and red blood cell counts ie both will go up and down. I have Polycythemia Rubra Vera and Thrombocytosis. I know for me it is the nature of the beast and life in general re our physiology etc
Oh really, I still feel fairly new to all this even after 2 years … did they ever change your Hydroxy dose to represent the changes in your bloods? This is where I feel a bit confused with all this ? I took 1000 last night with a slight gap in between and have been sweating profusely in the night which isn’t a nice feeling
hi,i have been on hydroxy for 3yrs 6months. Et with mpl mutation.my platelets have risen during the last 8 months hydroxy in creased from 1 mon friday 2 sat sunday to 2mon fri.3sat sun.platelets still not in normal zone. Waiting for next blood test and appointment to see where i go from here..
I have been on HU for 15 years , on a large dose for a while now [1500mg x 3 a week , 2000mg x 4 days a week] and whilst its Not my favourite drug and does not control things perfectly, so far trying anything else has not been a success. interferon made me weep and have just come off a drug trial due to adverse side effects making HU seem an attractive option!
I crept up to this dose level over a number of years, alongside venesection. it is not perfect and I too have lung issues that they say are unrelated, but has kept me going all these years.
I still seek an alternative within the UK NHS, but for now am glad to be back on 'the old faithful'. Hope this perspective helps.
Hi, I have to say me too! I've been taking hydroxycarbamide since June '22. Initially 1 x 500mg tablet per day. Then 2 x 500mg per day. Last year I noticed that the tablets are now branded Hydrea ( the American version). Just this year I'm now taking 2 x 500mg Monday-Thursday and 3 x 500mg Friday-Sunday. Platelets are still going up after being stable for 2 years. It does make me wander if the tablets are somehow weaker.
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