Agrylin User Reviews

Agrylin - User Reviews

Agrylin User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Agrylin sorted by most helpful. Patient Discussions FAQs


Comment from: lkschafer@aol.com, 55-64 on Treatment for 1-6 months (Patient) Published: September 02

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?

Comment from: 45-54 on Treatment for 2-5 years (Patient) Published: February 27

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.

Related Reading: liver

Comment from: 55-64 on Treatment for 10+ years (Patient) Published: January 23

I have been taking this for about 15 years. It controls my platelets. 8 years ago I had a bloody nose that would not stop and I was in the hospital for 5 dyas. Since then I stopped taking aspirin since I feel it causes bleeding in combo with agrlyn. I now have lyme disease that has become chronic and my immune system numbers are very low even when I do not feel too bad. I read somewhere that lyme disease does not mix well with the spleen. I wonder if anyone else has had this experience. Before I took this medicine I took hydroxea which made very very tired. Agrlyn makes me tired and my fingers tingle when cold. I do not take it with caffeine and I take it after meals and well before bedtime to decrease the plapitations.

Related Reading: aspirin | lyme disease

Comment from: energo, 55-64 on Treatment for 10+ years (Patient) Published: October 31

In 1998 I have been diagnosed with polycythemia vera, a blood disorder that results in production of excess red blood cells. Agrylin along with regular phlebotomy helped keep my hematocrit level under control since then. It took me several months to adjust to the drug, one side effect was palpitation. Not knowing the severity of my condition, I was fighting the treatment, skipping doses, etc. But after few months I adjusted. Also I started coumadin treatment to thin the blood and been on it since 2000. Initially I was taking two 0.5 mg. pills per day, morning/night, but around the time when I switched to generic the doctor had to increase my dosage to two 1.0 mg. pills per day. I have no side effects and feeling good. Cardiologist recommended metoprolol for palpitation, which I take rarely, but it is fare to say that these are caused by the stress in my life rather than side effects of the agrylin. I exercise a little in most days (yoga, walking), and I have good energy. The drug has been working well for me. It would be interesting to see results after 20+ years. At the time when I was diagnosed, patients with polycythemia were given 15 years to live after the diagnostic, due to high risk in blood clots, but these medicine are keeping it under control, so I have high hopes that this will not be a cause of death for me. Good luck everyone out there!

Related Reading: polycythemia | coumadin | stress

Published: March 25

I have been taking this drug for 10-12 years. Lately I have been experiencing rapid heart beats 140, with no physical activity or side effects other than weakness.

Comment from: hrivney, 45-54 on Treatment for 2-5 years (Patient) Published: January 14

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.

Comment from: lady011 , 25-34 on Treatment for 5-10 years (Patient) Published: September 02

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.

Comment from: JUREEN, 55-64 on Treatment for 1-6 months (Patient) Published: May 29

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.


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