Posted , 7 users are following.
I’ve seen some people have said they have been taking hydroxicarbinade capsules for 15 years what the longest people have taken them ? I’ve been on them for 4 years so not long at all yet, with no side effects .
Busy Bx
0 likes, 10 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
harrishill1 PO32_6AP
Posted
Hi po32. I don't know, but I've been on Hydroxy for ten yrs. Alma said 15 yrs, I believe. I just began to have blood blisters inside my mouth after 9 yrs, and I put up with it because I hated to change meds. Now that I think it is the Hydroxy that is causing my lead legs, and cramps. It started almost three yrs ago. I gradually stopped going to curves, and going for my walks every day. I have decided I will probably change to another drug. I have asked my hematologist, but he is having me take one capsul per day rather than two. That will probably not control a rise in red blood count, but I am trying it. We willsee if this makes my legs gain the strength I once had. Meantime, I am also interested to see how many others have been on the drug for many years before having these symptoms of blood blisters and leg weakness. harrishill
peter98873 harrishill1
Posted
Hi Harrishill,
You seem to be following the path I took with Hydroxycarbamide. Same symptoms and effects too. I'd say that you would be better off with Ruxolitinib for sure but the cost can be a draw-back. You need a sympathetic haematologist. Best wishes.
Peter.
justin23294 peter98873
Posted
Peter. I've asked in the past if anyone has lost their food taste while on hydroxyurea. after 6 months taking 16 - 500 mg per week I started to loose my food taste. My hematologist and other doctors did not think it was form the Hydroxy. But I wanted to try a different drug to find out. About 3 weeks ago I convinced My Hematologist to let me try Anagrelide. Well! After 4 days taking .5 mg twice a day may food taste started to improve. It's still not 100% but I'm enjoying my life again. I may not have to take more than .5mg twice a day. My platelets last week were 455. A little high. But My hematologist said to continue 2 per day. I know the side effects of Anagrelide . I don't have a heart condition. So; I'm willing to take a risk. So; Here is the prove. Medications affect different patient's in a different way.
margo82957 justin23294
Posted
Anagrelide was not good for me. Too many side effects. I was on Hydroxy urea for 3 years. No side effects. I am now on Jacafi 5mg twice a day. So far so good. This is my 2nd year on it.
Have a great Thanksgiving!!
justin23294 margo82957
Posted
Lucky you Margo. I tried to get Jakafi but ,I could not even get a starter package. Not eligible for any discount . $35,000.00 per year is way out of my reach. No side affects yet. Just a little jittery and a little light sleeping. But regaining my food taste is the most important thing in my life. I'll keep you all posted. Happy thanksgiving to you too!!
niloc47 justin23294
Posted
yes i lost my taste, on hydroxy since october 2017. also get weird blocked nose. keep clearing it and get blood spotting from nose.
peter98873 PO32_6AP
Posted
Hi PO32,
I suspect it was a comment of mine that alerted you to my use of Hydroxycarbamide, which I took for some 15 years before I was prescribed Ruxolitinib (Jakavi).Four years is quite OK but the problems arise if you are required to take larger doses over longer periods. Keep an eye on these aspects and do discuss any doubts with your haematologist. Some people seem to be unaffected by Hydroxycarbamide, but we are all different. If your blood counts start to rise then take account of your dosage. Best wishes.
Peter.
margo82957 PO32_6AP
Posted
hi peter
i also was on hydroxy for 3 yrs. now on jakafi for 2yrs.5mg twice daily.
i am tolerating it so far.dr.says i am stable. praise god.
margo82957 PO32_6AP
Posted
hi peter
i also was on hydroxy for 3 yrs. now on jakafi for 2yrs.5mg twice daily.
i am tolerating it so far.dr.says i am stable. praise god.
justin23294 PO32_6AP
Posted
I was on Hydroxyeurea for 3 years no side effects. Just lost my food taste. Asked my hemotholagist I I could try Anagrelide. I've been on it for 3 months and my food taste has dramaticle increase. My platelets are in normal range 350. The only side effects is that my sleep is on the light side. I'm taking 12 -1mg capsules per week. Hopefully I can reduce the dosage in the coming weeks. As I understand Anagrelide is specifically for Essencial thrumbosominia. (ET). The only problem it may give you heart palpitations. Luckily I do non I do not have a heart condition.