Anagrelide

[Purplelisa]

How many of you take Anagrelide, I do 8 a day, I'm 43 have ET since 2012, I hear so many stories about this drug it's very worrying, hydrea made me severely poorly, I felt like I was dying taking it, it rot my gums badly, I couldn't move without going dizzy, my whole body was hurting, moving an arm was a chore xx

[eastwood1932]

I think you mentioned this at the break out meeting on Saturday. I have recently moved from HU to Interferon and although it is not a walk in the park I think it is well worth looking into as an alternative. At least they don't need to BMB's with it. I had a really mental block with the idea of self injecting but have found I have gotten used to that quite quickly. Like all the drugs there are side effects and the list for INF looks horrendous but I don't think anyone gets them all, but it is a case of trying INF for a few months and seeing. If your Dr does not want to 'go there' as I think you described it then I would ask for a change of Dr to look after the ET as there a plenty who will 'go there'.

Best of luck. Janet

[Purplelisa in reply to eastwood1932]

Hi Janet, thank you for reply, there are 3 doctors at the hospital and they all meet up Mondays to discuss our case, the main consultant was the one that said I will more than likely get MF and that will be it, the lady consultant was the one that said we won't go there re interferon, the other doctor he is around my age he is great I get on realty well with him but it's pot luck who is in clinic the day I go, he did mention ruxolitinib to me, fingers crossed I get him on 23rd July, I will ask on that day whomever I see. unfortunately we cannot state which doctor we would like to see. which lady where you, where was you sitting when we went into groups.

Thank you

Lisa

[eastwood1932 in reply to Purplelisa]

Hi Lisa

I was sitting with Diana from Southport, about 2 or 3 rows from the front on the right hand side if you are stood at the back of the hall. Blonde, walking stick, maxi skirt

Why did the consultant say you would get MF, if have not heard of them predicting who would convert from ET. I actually thought that fibrosis was one of the side effects of Anagrelide which is why they do repeat BMB's. Which hospital do you attend?

Thanks

Janet

[Purplelisa in reply to eastwood1932]

Hi Janet, I was the one in purple top talking to you and Diana when we first went upstairs I though it was you, the main consultant said I would more than likely get MF through prolong use of Anagrelide as after Anagrelide there's nothing else for me to take, it's quite disgusting really that he said this.

I attend Sandwell hospital West Midlands.

Lisa

[eastwood1932 in reply to Purplelisa]

You are right, that is a terrible thing to say, even more so as it is just not true!

[Little-friend-Susan]

I am in the process of changing from HU to Anagralide. I was diagnosed with ET 6 years ago and have been taking HU in increasing doses since diagnosis. My platelets are continuing to rise even on the maximum dosage my haem was prepared to give me ( 17 a week ) so he suggested going over to Anagralide as my heart is in good condition. I am now taking 2 Anagralide a day and 2 HU a day. There have been no side effects from the Anagralide as far as I know except a possible sight problem. This only came on after I began take Anagralide but I do have other sight issues so there may not be any dierect correlation. I am 71 years of age and apparently Anagralide is not the first choice for the older person because of heart issues. Since beginning Anagralide - 3 months ago - my platelets are coming down. Hope this helps.

Sally

[Purplelisa in reply to Little-friend-Susan]

Hi Sally, thank you for your reply, I was told they may mix the two but I said no as hu made me to poorly. When I was on hu I went up to 4 a day for afew weeks then 3 on weekdays and two weekends, I was never told that I would take so many Anagrelide and do worry about getting MF, long tern use on Anagrelide they say is not good, I will ask in clinic next month if I get the chance, I feel the doctor my age is the only one actually interested in listening to me.

I was told I was one of the problem ones where platelets just won't stop fighting and keep retaliating to the drugs. Nice Isent it.

Lisa

[ourlife]

Hi purplelisa, I am 45 and on 8 Anagrelide a day for ET, I take 4 in the morning and 4 late evening. I was on HU for 10 years and then the side affects got worse and it was not controlling my counts so I swaped to AG, the side affects are different for everyone I occasionally get the palpitations and some gastro problems, but tolerate the AG quite well, I have been on this med for about 2 years. I wish you well, ourlife

[Purplelisa in reply to ourlife]

Hi our life thank you for replying, where you told you need regular bmb, every two years after being on Anagrelide after two years, and being young and on ag for a long time you will most likely get MF. This is what worries me.

Lisa

[ourlife in reply to Purplelisa]

Hi Lisa, try not to worry, (I'm a fine one to talk, it took me years to come to terms with this!) it is my understanding that regular BMB are a tool to best monitor us . I also belive that progression to MF can happen with ET or PV on any med, it may never happen. We have a condition we have to live with worrying about things like MF will not help, I will cross that bridge if I get to it, be positive and have fun, ourlife