I just had to share some horrifying information with you all. I take Agrylin for a high platelet count. I have been on it for about 6 years now and it has worked well to keep my platelets under control. I ran out about 5 days ago and had to wait for my Hemo to call in a refill. I picked it up yesterday and took 2 as soon as I pulled away from the pharmacy. Within an hour I was so incredibly weak I could hardly stand up and I felt like someone had wrapped a huge rubber band around my rib cage. It was still bothering me when I went to bed last night. Luckily this morning it is much better although now I have this feeling of weakness in my ribs but no shortness of breath or constriction. I came home and started doing some research to see if there could possibly be a connection. I found that it is known to cause unusual muscle weakness!!! That scared me in itself but then I ran across a new FDA warning saying that is has been linked to sudden onset Interstitial Lung Disease. I was horrified and about fell out of my chair. I was diagnosed with that about 4 months ago and none of my Drs. seemed to know where it came from. I have NO doubt that this has caused the ILD and am now wondering if they will soon discover it causes MG since it mentions the muscle weakness. I plan to call my Hemo Mon morning to see if I can get in and discuss options for reducing my platelets without the Agrylin. I am scared to death to take it after my reaction yesterday for fear I will go into a breathing crisis.
Luckily the FDA warning says most people improve after stopping the medication. Alice do you know anything about this and do you think it is possible that it could have brought on MG? I am furious that I had to find this out on my own and not one single Dr put this together. My Nuero, Hemo and Pulmo Drs. are supposed to send everything to each other. My Hemo has an excellent reputation and I just can't believe he wouldn't have caught this. I have not seen him since my ILD DX and am wondering if he isn't even aware of the lung problems. I just wanted to share this with everyone. I have been telling my husband that I feel like I am getting worse everyday instead of better and my gut feeling was that all the meds I'm on are just too much. Hopefully I can get off this medication and the ILD will improve quickly.
Kendra