Break from hydroxy

[jodary]

Has anyone ever taken a break from hydroxy and if so were there any repercussions ? Platelets currently in 700s but were higher before, currently on 1 x500mg a day. They do want me to increase but I’ve been considering asking for a break . I have not been feeling great and they won’t accept it could be that. I want to see if I feel better if I have a break before considering changing treatments.

[Cat1001954]

my consultant told me it’s only hydroxycabamide keeping me alive that’s my story my platelets are 354 from 456 3 months ago I’m on 12 tablets a week

[Mishie14]

I cannot comment on medical right/wrong to take a break but can from practical side as HU for treating ET JAK2 ruined my quality of life. I am in the camp that reacted poorly to taking it regardless my platelets count was coming down from over 1M. Hematology said would change to anagrelide but had to reduce the HU over maybe a month—no cold turkey quit. There are options which can be tried to see if one is a better fit. My experience was to go to anagrelide next which caused cardio issues once dose increased after a month. Cardio doctor said not good for me and I totally agreed. Another short wait before starting low and slow peginterferon. Been 18 months and it’s working out well the last 6 months. It has different side effects but for me are mild and easily handled. Wish this was the first drug but perhaps it took trying the others to adapt to getting used to treatments. Whatever, you have options. Hope you have input from MPN specialist as your doctor may not be familiar with treating the MPN disorders. HU is a chemo drug. It can have serious side effects for some and not others. I had bad side effects. Don’t be afraid to speak up.

[hunter5582]

People do sometimes take a break from HU or other cytoreductive medications. Others will temporality reduce the dose. Some take a break then rechallenge when having adverse effects.

If you do either, expect your platelet levels to rise. With PLT at 700 while on HU, you may rise to the level where the greater risk will be for hemorrhage rather than thrombosis as excessive bleeding/bruising occurs at higher platelet levels. Note that there is not a linear increase in thrombosis risk based on platelet levels. There is still a risk of thrombosis that needs to be addressed however. You will need to decide for yourself whether the increased risk of thrombosis/hemorrhage is worth the benefit of reducing the adverse effects from HU.

Usually, people who are having difficulty with adverse effects from HU would have the option switch to Pegasys to treat ET. Unfortunately, Pegasys is currently in short supply. Anagrelide is another option but tends to have greater adverse effects than HU. Anagrelide is still worth considering if you need cytoreduction and cannot tolerate HU.

You need to be clear with your care team that you are not tolerating HU. The adverse effects are unacceptable and you need to consider other options. I believe Besremi was approved as a temporary alternative to Pegasys in some parts of the UK, though I am not sure if this would apply to your case. Getting Besremi approved, if that is your wish, would likely be a challenge. You would need to be clear and assertive if you wish to move in that direction. You will need to be clear and assertive regardless of your decision. It is your body - your choice about the risks and benefits of each decision.

All the best moving forward.

[RazB]

hi jodary, I recently came off Hydroxy because I had to have a course of radiotherapy. I had been on it for 15 years and dose was 18 per week. I stopped in one go (at Prof Harrison’s advise). Platelets rose from 500 to 960 in the 7 weeks I was off it. I then started back on the same dose in one go and they fell to 530 in 3 weeks which is great. You don’t say how long you’ve been on Hydroxy and how long you’ve been feeling grim? I also came off Hydroxy a couple of years ago to give Pegasys a go but the side effects for me were huge and I stopped after 2 months and returned to Hydroxy. You’ll get a lot of good advice/experiences on here but ultimately you and your medical consultant need to work together and discuss exactly how you are feeling and what can be done. It may be that if you are new to Hydroxy your body is adjusting, it took me weeks to get used to it at the beginning and my consultant tweaked the amount I was taking several times. Best of luck and best wishes x

[CLONDARA]

Hi, we are all different and dealing with different doctors . My doctor has an increase/decrease system with my. My highest number when I started on H was 800 platelets so was on 5 a week. In the intervening years as the nos decreased the dosage came to 3. When after a year, nos went back up the dosage up. And so on. I struggle when the dose goes up and then adapt to it. By now I know when the nos are going up as I feel tired and sluggish. So I hope you get it sorted, is is possible to get a second opinion? Best Valerie

[Richinspirit]

The simple answer here is - don’t do it. My hubby was on 3x500 mg a day and went through rough times . Platelet count came down from 1100 to 350. Repercussions of ‘having a break’ from it are that your platelet count will rise pretty quickly and that brings with it all the associated risks. Weather this period - it will be worth it.

[SpendyWendy]

hi Jodary

I had to come off HU 500 mg (6 times a week) on 30 Aug as my liver function tests were high - possible drug toxicity - liver ultrasound & screen all normal so as I felt well & platelets in the 500s my MPN consultant suggested a break for a few months. I will be having my bloods repeated on Friday & teleconsult with my Consultant next week to discuss a plan. I’m hoping my platelets have not rocketed so I could maybe recommence HU 2/3 times a week again if my liver behaves! Hope you get the answers & plan you need for you

[Rem31]

Before stopping or taking a break from HU it would be best to discuss it with your doctor and ask about your potential for stroke and thrombosis. I’m guessing it’s elevated if your doctor wants to increase the dose. It’s not a risk I’d want to mess with without some upfront advice. Seen too much of the life changing effects of strokes and thrombosis in just my family to stop my HU, as much as I sometimes want to.

[ainslie]

as always always check with doc before changing anything, I am not suggesting this and you must agree with your doc but if you were to consider coming off to see how you feel you could consider reducing dose slowly eg one every second day and monitor and the every third day , then every fourth day etc etc, haems often won’t agree to such fine tuning but maybe worth asking. And of course it is worth considering a different med such as Peg, last but not least if your doc is not helping it’s maybe time for a second opinion from a MPN expert.

[Cja1956]

I would not do anything until you spoke to your doctor. 700 is still pretty high. When I first got diagnosed with ET 16 years ago, I started taking hydroxy and my platelets went back to normal and I decided on my own to stop taking the medicine after trying to reach my doctor several times. I ended up having to take an ambulance to the hospital because I have such terrible pain in my chest. I thought it was having a heart attack and I couldn’t even stand up. I platelets went from 300 to 800 and I had an enlarged spleen. My platelets have never been normal since. On the other hand, our pills can lose their effectiveness on their own after a while. You just unfortunately, have to rely on your doctor or get a second opinion if you’re not happy.

[Alliswell4me_]

Was Dxd with ET Jak2V617f in 2000 & was on aspirin for 11 years.

When I was Dxd with breast CA in 2011, hem/onc prescribed, since I was 60+, 500mg hrydrea once daily. Platelets stayed in 300-400 range. But I had troublesome mouth sores develop about 5 years ago so went to the Hydrea once every other day and mouth sores subsided,

Now Dxd with colon CA in Aug 2024 & have chronic anemia and platelets in 700s. Have had 3 transfusions of prbcs since June. Had colectomy, no stoma, and starting chemo Dec 4 with colon cancer specialist for high risk stage lll colon cancer.

So far I’m still on every other day Hydrea. See the MPN specialist at UM on Dec 2 to learn if I need to adjust Hydrea again.

Best wishes for you as you determine what next step to take. I had very good results for 6 years with Hydrea daily until the mouth sores became unacceptable for me and I went to every other day, All was well for another 4 years every other day, and platelets stayed stable until this year.

Again, wishing you all the best.

Chris

[dogsandhorses]

My prior Hematologist got frustrated with all my complaints of side effects from Hydrea, that she said, " just quit taking it." My platelets were around 600 as I had already reduced the dose of Hydroxyurea to about 2 or 3 a week. When I quit, my platelets went quickly up above a million. I found an MPN Specialist in another city, went for a consult, and started Pegasys with a new Hematologist. That drug lasted about 6 months, and platelets came down pretty quickly to the 600s, but side effects from that as well. So now, am on Jakafi, and it has the least side effects of anything so far. Platelets dropped to 217 in 18 days on 15 mg. twice daily! Now taking a lower dose since my response was so dramatic, and very few side effects. Haven't felt this good in years, except I do have fatigue that isn't normal for me. Also have a little dizziness and slight chest pain right after I take the tablet. Hemo sent me to the cardiologist for a check up on this, but says I may have to tolerate some side effects as trade off for controlling the platelets. Holter monitor was worn, and did not reveal any serious heart issues.

[azaelea]

Hi Jodary, I have had two occasions when I have stopped my Hydroxy 500 mg. daily and I did feel better,. It was with the Haematologist’s permission and she would only allow a month or six weeks off it. My Platelets did go up slowly and she didn’t want them above 600. I felt fine coming off with no side effects. I was recently trying alternate days but platelets started going up again so I’m taking 500 mg Mon to Fri and none on Sat and Sun. Will have blood test and Telephone consult mid December. Good luck with your decision.

[eladhil]

hey. I switched from h.u to peg. No problems. I didn’t have any side effects on h.u and not on peg

[Stargaye]

I have struggled with Hydrea since I started taking it July 2023… mainly digestive .. discomfort in varying forms/ bloating/ nausea/ just that gnawing pain in my upper abdomen… some days it’s more so than others. Also joint pain , tingling/numbness in my hands and feet. A month or so ago I just decided to stop taking it for 4 nights.. I was fed up…(reckless maybe my plts were 447 so I felt comfortable with doing it ..) but the difference in my overall wellbeing and just feeling ok was unbelievable even in those short few days. I felt normal. I was soon back on it again and dealing with the side effects and discomfort again until my next Haem appt in new year when I will hopefully change over to Pegasys and give it a try. For the moment I will tolerate Hydrea and its side effects.

I hope you can find a more favourable option too… it’s awful when we just don’t feel right.

[jodary in reply to Stargaye]

Thanks for replying, have been on it for 5 years although a very low dose and very slow increases up to 8 a week currently. Always just a vague feeling some days if not being well. But over last few months more so and have just declined a further increase . Platelets stay in 700s . Am reluctant to try Peg because my long term under active thyroid is so unstable and I can’t risk upsetting it as Inteferon will do as I battled with the drs to monitor it properly but have ended up having to do it myself.

[Stargaye in reply to jodary]

I didn’t mention I was originally put on 1 tab per day..platelets didn’t come down so haem upped it to 2 per day.. that was for a few months.. platelets were then in low 300’s but I felt awful plus all of sudden very low iron and the fatigue so debilitating. My GP actually suggested cutting back which helped over all. Plus I’ve had weight gain. . I’ too am hesitant to try pegasys also because of its own side effects.. but then some breeze through without any or very mild. Unfortunately I have reacted to a few medications over the years… but guess won’t know till I try.

It is hard when you have other underlying issues to deal with on top of MPN.

[Planting]

hi

I have just taken a break for 7 weeks but my case was to have chemo radiation. My bloods were taken weekly and went from 475to 720 and then back to 620. Due another blood test soon. The reversal was thought to be due the chemo I was taking for the cancer. It seems your reading may well go up. It needs discussing with your team. All the best

Planting