Am I becoming intolerant to hu

[millycat]

Is there anyone out there who has become intolerant to hu ? I have been taking hu 12 a week for approx 12 years but in recent months have had recurrent migraine which is now paired with hives it's driving me nuts. Has anyone else had similar problems.

[bruddery]

Hi I can definitely empathise - I have been having problems with hydroxy for quite a while. Taking it for seven years. Platelets rise and they increase but I then suffer sore mouth. ulcers. Swollen tongue . Fatigue headache incredible pain in feet and lower legs. No appetite etc. . Was taking 22 a week they have never been able to go above that due to symptoms but always reduce it to 17 a week when this happens but then platelets rise.. They were talking about transferring me on to anagralide - in fairness they've said it several times but I've been reluctant to change - better the devil you know!! However it's now becoming intolerable I see the haem Thursday and she is saying to seriously consider changing - watch this space.... Good luck

[Little-friend-Susan in reply to bruddery]

When I was taking 19 HU a week and the platelets were still going up my haem said that was as high a dose as he was prepared to use. He recommended transferring to Anagralide, which I did. The sore mouth and gums have disappeared and my hair and nails are improving. I asked him why Anagralide is not the treatment of choice for ET as it targets platelets and he said that it can affect your heart. I had to have an ECG before I began the course. Fortunately I have a strong heart and I will say I feel better now than the 6 years I took HU. So far, 9 months, the platelets are going down.

[bruddery in reply to Little-friend-Susan]

Thanks for the reassurance. The haem was very upfront with POSSIBLE side effects. So maybe its time to give it a go!

[bruddery in reply to Little-friend-Susan]

Well saw a very young doctor/haematlogist at the hospital today - it's a 160 mile round trip so no small journey. All my FBC up and I said how the consultant previously spoke of transferring me to Anagralide. She went and spoke to consultant who said yes to start Anagralide. I asked about tests that might be needed and was told nothing needed to be checked. Take the pills come back in 6 weeks get own doctor to do FBC in 3 weeks. As I previously had TIA can anyone tell me how safe it is without testing first.... Seems a bit flippant to me.

[blulou]

After all, it is a poison.

[Marie95]

Hi Millycat, have you thought of trying Interferon? some do well on and have excellent control count of bloods, others do not but you wont know which you fall into unless you try the medication. I have been on Hu about 4 years quite good control of counts, but side effects such as stomach indigestion,(even with med's) mouth uclers and generally feeling shattered can be a constant certain weeks, no pattern to it, Good luck with you decision

[millycat]

Thanks everyone for taking the time to write back I really appreciate it.