Hydroxyurea or anagrelide

[jointpain]

Hi. Long time since my wife was having her ruptured spleen removed in France. Currently she has been on hydroxyurea at three capsules a day. This has been for a week, in which time her platelets rose from 403 to 800. The week prior she was on nothing, which showed platelets rise from 60 to 403. The week before that she was on two hydroxyurea and two anagrelide, which brought platelets down from around 430 to 60. Now as a newby to all this she is thinking the hydroxyurea is not doing anything in bringing the platelets down while the anagrelide is working well and quickly. Have any of you had a similar experience? While she was in hospital for the 19 days before, her platelets went to 1900 and only dropped after anagrelide was given even though hydroxyurea was already being administered all be it for only a couple of days. We understand that hydroxyurea costs pence per capsule while anagrelide costs pounds. Could the cost implications have a bearing on why the hydroxyurea is being pushed rather than giving her just anagrelide? Please bear in mind I am probably the biggest sceptic in the world, and find it difficult to trust any of the medics.

[MPort]

Hi,

From what i have read and heard over the last 15 years Anagrelide has been superceded by Hydrea and Interferon plus others. There is little comment about it on these forums. It is also very difficult to know the effect of these drugs in the very short term. Sometimes the changes in blood results can be caused by other reasons. It is good to be skeptical. Good look in your research and finding best options for your wife.

Mairead

[lizzziep]

I was on hydroxy for 3 years and it did bring my platelet numbers down, but not to normal levels. When I was changed to Anagrelide, because the hydroxy caused ulcers on my feet the dermatologist I saw (re the ulcers) said hydroxy is given first and foremost by haematologists because it is cheaper. I've been on Anagrelide for a couple of years now and my platelet levels have mostly been in the normal levels. Although I know some people have been on hydroxy for years with no problems, but we all react differently to the drugs.

I do hope your wife improves, she (and you) have really been through the wringer, best wishes for the future.

Lizzie x

[jointpain in reply to lizzziep]

Thank you lizzziep. I have read that hydroxyurea takes time to reduce platelet count, some saying five weeks to drop a significant number. Not read that it allows them to double in a week though, as happened this past week. Luckily her white cells have dropped to normal, but we don't know if it the hydroxyurea or that all infections have gone, which is maybe more likely as her temperature has been normal for a good while now. Just don't want her platelets to drop as low as 60 again.

As for going through the wringer, there is a bonus in that the first stay in hospital in France was all free!!! And the second when her temperature was over 40 has now been reduced from 4676 to 850 euros, a very small price to pay for my beautiful wife. Thanks again for your answer.

[stillkicking]

You certainly are having a most awful time, and I can very well understand how hard it is to put your trust in medical people, when you have both suffered so much.

The Hydroxyurea vs Anagrelide thing does interest me quite a bit as there is a chance that I may have to move from Hydroxyurea to Anagrelide myself, so I have been doing a fair amount of reading about both drugs and have looked at several drug trial results. Every trial I have seen indicates that Hydroxyurea does a better job than Anagrelide over all, and is a bit better tolerated. Of course this is based on averages, and there are always cases where an individual where the opposite is true.

I am in the South Island of New Zealand, and our health system is struggling quite seriously due to lack of money and medical staff, and hospital buildings that are having to be replaced. Cost is certain to be a major consideration in any treatment decision here, and, if the cheapest drug will do the job, than that is what will be used. In the case of Hydroxyurea and Anagrelide, I do think that the cheapest drug is actually the better of the two for most people. In my case Hydroxyurea may not be working quite as well as we hoped, so I am sure that dosages will either have to go higher, or I will have to switch to Anagrelide and see if that drug works for me. Sadly, here the cupboard begins to get rather bare after that, so I am hoping!

Your wife's platelet levels seem to jump around in a very unstable way. It is a most anxious time for you, and I do send my sincere sympathy.

Very Best Wishes to you both,

Peter

[jointpain in reply to stillkicking]

Thank you Peter. My wife is so much better today though she has a few tiny red spots/microbleeds which makes me think her platelets are now quite low and with the 100mg/ml clexane each day could be true. But we have to wait til Tuesday to see the hemp and another test.

Nearly emigrated to South Island in the 1980s but they wouldn't have me!!

[stillkicking in reply to jointpain]

Good to hear back from you. I am delighted that your wife was having a better day when you wrote. Do send my best wishes to her all the way from NZ. Spring time here and seeing the garden start to wake up after winter sleep always gives a lift to the spirits and thankfulness for the miracle of life itself. I've been in NZ since Jan 1976, when my parents decided to emigrate here from the UK. We settled first in the North Island, but my wife and I have lived in the South since the 1980s.

Kind thoughts,

Peter