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Blood and Blood Vessel Board Index
Pages: 1Showing 1 - 19 of 19 for agrilyn. (0.001 seconds)

... For what it's worth, was diagnosed with ET 5 years ago. I was placed on Agrilyn due to the possible risk factors involved with taking Hydrea. My Hematologist said Hydrea was prone to possible cause leukemia. ... (198 replies)
Living with PV
Nov 18, 2009
... Hi All! I have had PV for going on 15 years now. I take 1000 mg hydrea and 1mg agrilyn, two 81 mg aspirin every day and currently see my hem every two months. I went for almost two years without a phlebotomy and since the begining of this year have had 4. I go back to my hem Decmber 26th. I have very poor energy and get very nervous @ times. I take 3mg xanax and 50mg zoloft... (2 replies)
Blood removal
Feb 16, 2009
... times and sometimes a fluttery feeling. I'm on 1mg agrilyn a day, 1000 mg hydroxurea and an 81 mg aspirin. I would think the high red count is a possibility. ... (7 replies)

Jan 20, 2009
... Hi.I wonder what meds the dr has him on? I take 1 mg agrilyn,500 mg hydroxurea,81 mg aspirin.I take benedryl for itching.I'm taking 515 mg potassium which I hope is helping my leg cramps and some nights before bedtime I use a topical pain cream called Mioflex that seems to help;and then I take green tea capsules and Ibupofan.I have been polycythemic since 1995 and am 60 years... (3 replies)
... life. The biggest issue I have now is the extreme fatigue. It seems like i never get enough rest. My Dr. has me on a med called "Hydroxurea", another one called agrilyn and an 81 mg aspiring. ... (25 replies)
... Hi Amy, I'm sure its harder knowing at a younger age. My children are all grown. My Doc gave me Hydroxyurea last year for about one month. He said it was the prefered drug, but I had so many mouth sores from it and had a constant metalic taste. So, he put me back on agrilyn. The hydroxy did bring my counts down really quick and they stayed down since then. But because of... (37 replies)
... Hi Karenann Do you have any side effects due to agrilyn?Are there any long term effects to this medication? Do you know why your dr decided on this treatment and not something else.? Just curious on criteria they use overseas. I completely agree with you that we should not give much importance to the problem. However on the other hand due to my wish to have kids i need... (37 replies)
... ade sense with all the symptoms I had. I was very tired and had pain in my fingers and arm. A few of my fingers were actual purple but that went away. I am on agrilyn my platlets so far stay in the high 400's to low 500's I just started taking the omega 3 fish oil caps. ... (37 replies)
... I was place on Agrilyn with good results but became pregnant while on it and it was stopped. ... (19 replies)
... Obviously, you are getting good feedback from people with direct experience with pregnancy and ET, but jus tremember that meds are probably going to be necessary becasue of the rapid production of platletes. Phlebotomies will only help short term. Please talk with your doctor about alternatives to your current drug therapy. I am using agrilyn. Unmedicated, I'm at about 1.1... (19 replies)
... Hi, I guess I left out that I do have ET and did have BMB. I am presently on agrilyn and it seems to be keeping most everything at bay. But I don't think I was ever as bad as Adam sounds. Have you been to a vascular doc or Hematologist. ... (16 replies)
... I have the ET and get the itching and redness. Before I was diagnosed I had a Dr. tell me it was renaulds. One of my fingers were actually purple for about a week. The fingers burned and the hand, wrist and arm ached. It was a mystery to my former doctor. I haven't had the purple and painful fingers and the weird heart rhythm since I have been on the baby aspirin and... (22 replies)
... I took Hydea for 3 mos. It lowered my platelets. I took 4 pills a day. I wouldn't say it was a overly dramatic drop. But I went back on agrilyn cause it cause other discomforts. I don't think this helps much. It is just my experience. ... (2 replies)
Mar 19, 2006
... Hi, I was on Hydrea for 3 mos.. I just went off of it last week. I got sores on my tongue and gums and a strange taste in my mouth and my GERDS was really acting up. Anyway I am now back on Agrilyn. After a week I am feeling better. I take a coated 81 mg aspirin daily which doesn't seem to bother me. I do think some of the decision of whether a Doc puts you on meds has to... (13 replies)
... Hi Kawfee, I have been very tired for a long time. Mostly I just wear out by 3 in the afternoon. A lot of times I just don't sleep well. I was changed form Agrilyn to Hydroxyurea 2 months ago. My hemotologist said something about Mayo's doing a study and change opinion. I go this Friday to see how this last mo. is doing. ... (198 replies)
... It seems we all are a little unsure of our future with this ET. I think sometimes they give medication not just on the basis of how high the platelet count is but age and if you are syptomatic. My Doc said the new study at mayos says they are going back to hydroxyurea from agrilyn. I am in my 50s and they think I have had it since my early 40s because of the problems I had,... (198 replies)
... Hi SJD, I just joined this forum...I am 43 yrs, old and was diagnosed with ET when I was 29..2 years on Hydrea..then stopped and just have been on aspirin 325 mg a day since then platelets hover at 1.2 million...My hematologist thinks that hydrea is safer than agrilyn?? I hope you are doing ok and will talk to your hematologist soon. tefferturtle (18 replies)
... thus the name "essential". He is on Agrylin 1 mg twice a day. Platelet count was up to a million but with Agrilyn it is kept down to just over 400,000 pretty consistantly. Not only is the count important, but the size of the platelets. ... (36 replies)
Polycythemia Vera
Jan 29, 2005
... Hi = I'm a new user to this site and I have found more information on it than any I've read. First of all, I was diagnosed with PV about 17 years ago when I had a routine physical. I had had a ruddy complexion for some time, but just attributed it to my red hair and fair complexion. Platelet count was over 1 million. I am now 77. I wanted to relate this information to... (3 replies)

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