July 24, 2016

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: 65-74 Female on Treatment for 2-5 years Published: January 17

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

Comment from: happyone, 45-54 on Treatment for 10+ years (Patient) Published: June 14

I have been taking Agrylin for 12 years. Side effects of palpitations and shortness of breath are tolerable. I take propanolol as needed for the rapid heart beat. I am surprised to read about 1 patient on this site who said she is taking 6 x .5mg twice a day. Read the Dosage Instructions. I believe the maximum dosage at one time is 2.5mg. I find that a dosage of 1mg at a time dramatically reduces the side effects.

Related Reading: palpitations

Comment from: Sue, 35-44 on Treatment for 2-5 years (Patient) Published: May 14

When I was diagnoised w/high platelets, they were at 1.4million. 3 yrs later, it is still around 600,000+, should be under 400,000. I have rapid heart rate after each dose, lasting about 30min. I take 3 -.5mg/day. I am tired a lot, but feel better than I did at 1.4million. I exercise several times a week and this has had an effect on my platelets also. So, taking my rx, asprin a day & exercise have helped me stay between 600 to 650,000.

Comment from: campbell, 35-44 on Treatment for 10+ years (Patient) Published: January 06

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.

Related Reading: cancer

Comment from: cammitoo, 55-64 on Treatment for 10+ years (Patient) Published: February 06

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.

Related Reading: anemia

Comment from: dkb, 45-54 on Treatment for 5-10 years (Patient) Published: November 19

I started out using Hydrea until I could no longer obtain it. My doctor switched me to Agrylin which I have been using for about 8 years. I do have rapid heartbeats and some hair loss but nothing I can't live with. I take .5mg 4 times a day. My platelet count has come down from 1.5mg to 400,000mg.

Related Reading: hair loss

Comment from: rhenac, 45-54 on Treatment for less than 1 month (Patient) Published: December 27

I am a 46 year old female who was recently diagnosed with ET, I started taking the Agryln about 3 weeks ago, I am very sick at my stomach frequently and have back pain constantly. But, it appears to be lowering my counts, so I hope the sickness goes away soon. I will continue this review as it progresses. Does anyone else around my age have this disease? I would really like some input.

Comment from: Gabriel, 35-44 Female on Treatment for 5-10 years (Patient) Published: January 23

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.

Related Reading: arthritis

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