Anagrelide: Do you switch? How to cover costs?

Posted by esperanzam @esperanzam, May 17, 2023

I have seen several state here that they are taking anagralide. After 8 years of taking Hydroxyurea (Hydrea) my doctor wants me to change to ANAGRELIDE. When he called in the prescription, my pharmacy called me to ask if I knew that it would be $400 for a 1 month supply? Of course, I had no idea. I asked if my Medicare Part D was not covering it, he said that it was and that was my part. We are living on SS and a Veterans Disability and do not have that kind of money. I also have other expensive medications. So, my question is this: does anyone out there have suggestions for how I can afford to get this medication if I decide to follow the doctors recommendations? My platelets are at 795,000 and although they have been pretty well controlled in the past, he feels it is causing my red and white cells to be lower than they should be, since the Hydrea targets all three, not just the platelets.

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I was on Aneglaride for a short period of time and it was inexpensive. We live in Va and it accepts Medicaid and ACA expansion I’m not sure if that makes a difference. Also try Good RX instead of going through insurance. Do a google search and see if there are any grants. I’d be interested in what you find out.

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I looked it up on Good RX and it’s about $40

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I also looked up Good RX and you can get a free coupon to use at a much lower price.

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@milkweed

I looked it up on Good RX and it’s about $40

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I saw that and wondered if it was for real?? Another question, I am seeing a lot of possible side effects. Did you experience any of these? I already have a long history of lung and other problems and wonder if that would be a problem for me? There are few side effects of the Hydrea and I've been on it for 8 years. Just wondering if I should ask the doctor to leave me on the Hydrea for those reasons.

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@eileen11108

I also looked up Good RX and you can get a free coupon to use at a much lower price.

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Thank you so much. Have you ever used Good RX? I have seen it now and then and even had things mailed to me...

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I have used Good Rx and highly recommend it. My experience with Aneglaride was not a good one. It gave me heart palpitations, high blood pressure and a general feeling of impending death. I know that sounds dramatic but imagine my surprise when a Dr at Mayo told me that they stopped using it and used these words when describing how his patients felt! I suggest asking your Dr for other ideas. Perhaps Jakifi. I was allergic to Hydroxy, interferon blew up my thyroid, Jakifi is working well and I have no side effects., it does suppress all of the things your Dr is trying to avoid though, but still worth a try.

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@esperanzam

Thank you so much. Have you ever used Good RX? I have seen it now and then and even had things mailed to me...

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I have not used Good RX only because I am fortunate to have an excellent prescription plan from previous employer.

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@milkweed

I have used Good Rx and highly recommend it. My experience with Aneglaride was not a good one. It gave me heart palpitations, high blood pressure and a general feeling of impending death. I know that sounds dramatic but imagine my surprise when a Dr at Mayo told me that they stopped using it and used these words when describing how his patients felt! I suggest asking your Dr for other ideas. Perhaps Jakifi. I was allergic to Hydroxy, interferon blew up my thyroid, Jakifi is working well and I have no side effects., it does suppress all of the things your Dr is trying to avoid though, but still worth a try.

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Hi milkweed,
My hematologist recently suggested Anagrelide to me because I have had headaches taking Hydroxyurea. I told her I was very concerned about it because it seems some people have heart palpitations taking it. I have AFib and do not want that side effect. I know everyone is different though.

I am currently taking 500 mg Hydroxyurea on Monday/Wednesday/Friday….no headaches. Platelets dropped 100 points in less than a month to 519 so I hope that continues. I am 79 and have ET JAK2.

Eileen

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Thanks for sharing. I have been on Hydrea for 8 years and have had success with it. I am 72 (soon 73 and was diagnosed at age 64. When I was first diagnosed (ET JAK 2) I had 1,250,000 platelet count. First hematologist in Venezuela started me out at 5 capsules of Hydrea a day and gradually came down. Right now I take 2 - 500mg caps a day and two days a week I take 3- 500 mg a day. My count is up to 795 again but I had surgery so I'm hoping they will continue to come back down. Have had three surgeries since diagnosis for other issues and each time my platelets go up for awhile.

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@milkweed

I have used Good Rx and highly recommend it. My experience with Aneglaride was not a good one. It gave me heart palpitations, high blood pressure and a general feeling of impending death. I know that sounds dramatic but imagine my surprise when a Dr at Mayo told me that they stopped using it and used these words when describing how his patients felt! I suggest asking your Dr for other ideas. Perhaps Jakifi. I was allergic to Hydroxy, interferon blew up my thyroid, Jakifi is working well and I have no side effects., it does suppress all of the things your Dr is trying to avoid though, but still worth a try.

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Thanks for sharing this information. I have just about come to the conclusion to stay on Hydrea and watch things cautiously. I have had minimal problems with Hydrea. And my insurance covers the cost well.

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