User Reviews for Agrylin oral

I have been taking this drug since August of 2003. Since than, I had a sensitive pain on my left side on my spleen, which I was fearing that I may had to go for surgery, luckily I started to watch my diet intake and it healed. Now 2010, My knee, hip and wrist and fingers hurts, like if I had arthritis. I take 6 capsules of 0.5 in the morning and 6 at night with meals each time. Now my oncologist is telling me he feels that I should take less of Agrylin because I will develop with some kind of bone disease. I am wondering if anyone lived at least 25 years with this kind of disease and if I can die by it even if I do take care of myself. I believe watching what you eat, taking protien/creatine/other suppements will help me and alot of exercise will beat this disease. So far, this is what I do. Read More Read Less

Been taking since January of 2005, first two days were awful headaches, then zero other noticable side effects ever since. Have Essential Thrombocythemia, platelets went from 700/dc to 300/dc. See oncologist, not hematologist, take 0.5 mg twice a day. I test every 3 months and visit 2 x per year. No hypertension, headaches, abnormal organ function - don't know of other options or would discuss with Doc to make sure we select best options.

I am 39 years old and was diagnosed with thrombocythemia 17 yrs ago. My platelet count was 1,600,000 when first diagnosed and today it's about 700,000. I was fortunate enough to be in a case study at Yale (given agrylin before it was approved by the FDA and have been on it since then). The biggest side effect that I have experienced is a rapid heart rate and palpitations. I also feel fatigued alot of the time. I have learned to live with the side effects because some of the other treatments available for ET have been known to cause cancer with prolonged use. Read More Read Less

My platelet count went up to over a million four hundred thousand, then the agrylin kicked in and three weeks later my count was down to 700,000. But...the doctor had to up the dosage to 6 - 1mg. per day. Most days I feel yuck, some days have some diarreah. Could this be from the agrylin?

I've been on Agrylin for 9 years. I have heart palpitations and get pains in the area where my spleen is. taking it 4 times a day is a real drain for me. I'd like to start taking 2 tabs 2 times a day. but not sure if that applies to anyone on the drug?? my platelets are very well regulated. and feel overall healthy.

So far agrylin has helped my platelets go down. When I went on them my platelets were over 900,000, but in two weeks they were down to 618,000. I had no side effects.

effective,but rapid heartbeat sometie

I have been on this med. since 2005. It does a good job of keeping my platlet count down, but I have the side effect of rapid heart beat. I have been to a cardiologist who has said my heart is fine and not damaged. I also feel extremely tired even though my lab results do not show abnormal results. Lately my gall bladder/liver area has been giving me pain, which I am about to have checked out. I don't know if these are connected to this medication or not.

Have used Agrylin for ET for nearly 10 years. Do have the usual dosage adjustments now and then, but it has been effective in controlling platelet levels. HOWEVER, within past couple of years, issues have arisen with elevated white cells, chronic severe anemia and poor lab results re: calcium, etc. Is it related to long term use of Agrylin? Is it just a progression of the genetic mutations? Who knows? Sadly, no one seems to be interested in researching this rare phenomenon.

This medication reduced the platlet count, and was easy to swallow. However, everything I have read and the experience of my husband taking this drug, I am surprised it's still on the market. My husband had a massive stroke. When life flighted to UC Davis the Hem. doctor told me he should have never been placed on this drug. It was probably the cause of his bleed. When I looked it up on the internet, it showed that during an Agrylin study of 89 people, 57% of the people dropped out due to serious complications. This was on WebMd dated July 5, 2005. In fact, it stated that their findings were so astonishing that they halted their study to publish the results. I continued my search and found that several doctors have found that Agrylin is not a suitable choice for ET. I continue to research it and continue to find more and more. I have contacted the FDA and have received no response other than they would check into it.Read More Read Less

This medication was prescribed for the treatment of thrombocytosis. It replaced the drug hydroxyurea when that drug began to decline in effectiveness. After taking Agrylin for about two years, I was diagnosed with hypertension. Hemotologist treating me did not attribute the high blood pressure to the drug but after getting a second opinion was told that it does in fact cause hypertension. When I switched back to hydrea, my high blood pressure went back to normal. In addition to the hypertension, I had irregular heart beats, severe headaches, and swelling of my ankles. Feel much better since I was taken off and returned to hydrea which began to work again after being off for two years. Read More Read Less

Use of Agrylin has resulted in acceptably lowered platelet counts over several years for essential thrombocytosis.

so far doing ok on medication