Anagrelide in UK and in the USA😱

[jointpain]

My long suffering wife has been taking Anagrelide and a little hydroxycarbamide for five years now. During these five years she has endured numerous upper GI bleeds, and endoscopies, which have never found the source of the bleeds. More recently, and only since her Anagrelide has been reduced from 21 a week to 14 a week she has not had the big bleeds, but has been told she is losing blood from somewhere, hence the regular RBC transfusions and iron infusions. She easily drops around 2 points a week of her Hgb. These past few weeks she has had a number of nose bleeds, but the majority of blood lost seems to be from the sinuses and coughed up/spat out as glutenous clots. I asked at the hospital pharmacy whether Anagrelide could be to blame, as I half remember reading that it could cause a thinning of the surface membranes within the body. I was also under the impression that the USA had discontinued using Anagrelide, and wondered why. The pharmacy towed the NHS line and came up with, have a talk with the haematologist, which is pointless, as they don't really listen, and accuse me of reading too much. Does anyone have an answer?

[hunter5582]

Sorry to hear about the ongoing struggles finding answers. Your wife's MPN care team should be more forthcoming with information. Perhaps the answer at this point is to get a second opinion from a MPN Specialist. Or, perhaps, get a new MPN care team.

You are correct that anagrelide can cause excessive bleeding, including nosebleeds and coughing up blood. rxlist.com/agrylin-drug.htm That is not to say that is what is going on but it is a very reasonable question to ask. FYI - anagrelide is still used in the USA as a second-line treatment option for thrombocytosis.

I would have a number of questions. Has your wife ever been checked for Acquired von Willebrand Disease or another coagulation disorder? If there is no evidence of a detectable upper GI bleed, has the lower GI system been checked? Have they checked for occult bleeding in a stool sample? Is there evidence of the MF progressing? Is anagrelide/hydroxycarbamide still the right treatment choice or would Jakavi or another option be better?

Those are just questions off the top of my head. I am sure there is more to consider. The best answer I could give would be to find a MPN Specialist team who will actually give you answers. just in case you have not seen it recently, here is a list. mpnforum.com/list-hem./

Wishing you success in getting answers.

[jointpain in reply to hunter5582]

I'm so grateful you have replied with such a comprehensive answer, I was hoping you would. ( my brain isn't what it was, since the accident in January) we see the hematologist next week, and we hope to get him to address this bleeding.

[Scottishterrier]

Unfortunately I have never been on angarlide just Hu I sometimes have sore calf muscles but put it down to sometimes chopping and changing footwear going from trainers to boots with a small heel is your wife on blood thinners because with all the bleeding she is having sounds as if the dosage may be too high but keep your wife telling her consultant that she is losing so much blood for danger of her becoming aneamic also tell your wife to tell consultant about joint pain as if your wife has just started Hu I know they can cause unexplained chills and fever but please again ask her to tell consultant if she has just started on Hu it may settle through time don't suffer take paracetamolStay safe both of you

Scottish terrier