Looking for advice - has anyone stopped taking hydroxyurea

[tigerlove3]

Hi everyone, my husband is 28 and was diagnosed with ET CALR 2 years ago and since then he’s been on hydroxyurea and aspirin. The doctor said he will have to take hydroxyurea for the rest of his life and that if we decided to have anymore children to let the doctor know so we can plan and get him off the meds and onto a different medication. Has anyone been on hydroxyurea and stopped taking the medication and managed with just aspirin? My husband’s levels are in the 300 range right now but goes up to over 1 million.

[jillydabrat]

Please, please don’t just stop any medication. Your husband will be putting himself at risk of heart attack or stroke. Ask to see your consultant who will guide you safely along your quest to increase your family. Good luck in the baby department, I am a sucker for 👶 xx

[tigerlove3 in reply to jillydabrat]

Oh don’t worry he won’t just stop taking it! We will definitely talk to his hematologist first. Thank you so much for responding !!

[stevenjust]

Hello, I was on 1500mg daily Hydroxy for around 10 years and my platelets were between 400-600, I asked my Dr if I could come off it thinking he’d say no but he said yes of course, my platelets are now between 1000-1400 and as long as they stay below 1500 I take no medication. I am now 49 and had ET since my early 30s.x

[tigerlove3 in reply to stevenjust]

That is awesome! I’m glad you are doing great with no medications!

My husband has mentioned this to his hematologist before right now he is active duty military so he asked about not continuing with hydroxy due to the side effects and managing with aspirin however, because his platelets went up too high his hematologist didn’t want to risk it my husband would be considered non-deployable which could affect his career in the military but as long as his levels are controlled and he is doing well they said he will be fine. He really wants to stay in and do the full 20 years so it’s another thing that really affects my husband’s choices when it comes to his condition

[Wyebird]

Wishing you both lots of good fortune on your future planning.

[tigerlove3 in reply to Wyebird]

Thank you so much

[JojoWonder]

Hi Christine,Your Husband seems very young, at 28, to be on Hydroxy. Has Pegasys interferon been mentioned as an alternative treatment? It’s the gold standard in ET treatment and the preferred treatment for younger patients. With Hydroxy being chemotherapy isn’t ideal for very long term use and with your husband being so young it could mean being on it for 60 years...

I have been on Hydroxy (at age 42) and discontinued use, under the supervision of my Haematologist, and am now on Pegasys and aspirin alone. My platelets have gone from almost 1200 to in the stable 200’s. Pegasys is a slow acting treatment so in my case Hydroxy was added to kick start the decline. Your Husband and I share the same mutation Cal-R and people with this mutation tend to have much higher platelet counts than the others.

It’s always best to try to see an MPN specialist or at least someone who has experience in dealing with MPN patients. Good luck and keep us updated x

[tigerlove3 in reply to JojoWonder]

Hi! My husband started hydroxy when he was diagnosed at 26. His previous hematologist actually has mentioned interferon before but put him on hydroxy and never brought interferon up again. I questioned why they put him on hydroxyurea instead of managing with aspirin just like some of the others on here but my husband told me that since he’s active duty his doctor explained that if his platelets are not controlled and are too high they would have to mark him as non-deployable status which could eventually affect his career and he really wants to stay in the military and not be medically separated.

I’m glad you’re doing well on interferon. How did you do during the switch from hydroxy to Pegasys?

His hematologists have told him he would just have to be on hydroxy for the rest of his life, they check his platelet counts every few months and that’s that. I remember reading on hydroxy and it’s long term effects and it doesn’t sit well with me so I’m definitely going to mention interferon to him and see what he thinks.

[Townie in reply to tigerlove3]

I think interferon is very expensive. I went on it in 1992 and it was £20 a shot in those days, so goodness knows how much it is now, I’ve been on Hydroxy since 2005.

[JojoWonder in reply to tigerlove3]

Hi, I’ve had a very busy few days so just getting back to responding now.I was put on Hydroxy in conjunction with Pegasys. For I was for about 6 months taking both. I then stopped taking Hydroxy, under supervision of my Haematologist, and my platelets stayed with in the 200’s. I’ve been taking Pegasys alone for a year and a half now.

I’ve just had a quick scroll and it’s mentioned that Pegasys is expensive. This is my understanding too. I hope you help your husband to find the right treatment for him. He’s lucky to have you x

[shiela23 in reply to JojoWonder]

hi jojo are you still on meds now? hows ur platelets now? im on pegasys 5 months now mine is 400 now .. and still i lots of symptoms including bone pain dizziness squeezing pain.... have you experience that????

[Ratton726]

Hi- don't stop Hydroxea without medical advice-there are other drugs that can reduce the platelets (-I am on one of them) and I take aspirin. Ask Haematologist about alternative meds! Best wishes.

[tigerlove3 in reply to Ratton726]

Thank you! Definitely won’t stop it until he can talk to his hematologist. I’m hoping he can find an alternative! Do you mind sharing what drug you are on that helps reduce your counts ?

[Ratton726]

I take Anagrelide-(and aspirin)have been on them for about 2 yrs-seems to be okay and platelets have dropped considerably ( half of what they were)!Best regards

[Gaithersburg]

I started Hydroxurea when I was 27 for about 5 years with aspirin. Then moved to US where they said I could be on aspirin only which I was while I was there and had my children. I started Anagrelide in 2010 with aspirin and have been on it ever since which I presume is because my platelets are high ie 1500. Ask the haematologist when you see them next. I plan to as I see lots of people with ET are on aspirin alone up to 65 years of age. Always good to ask! Good luck.

[tigerlove3 in reply to Gaithersburg]

Thank you! I will have my husband ask his hematologist about other drug options or possibly just be on aspirin! I hope they can figure it all out. Him being on HU concerns me because of its long term effects

[johnnie5 in reply to tigerlove3]

What are the long term effects?