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

This information is on the drug insert. Here it is on Rxlist.com

http://www.rxlist.com/agrylin-drug.htm

You have to click on each page, as they do not have a separate addy.

There are cardiac effects, which you might have experienced by taking 2 tablets to start.

You should definitely talk to your doctor.
The lung issues are claimed to resolve when the drug is withdrawn.

This drug unfortunately does not appear at Patientsville.com where post marketing reports are revealed. I was hoping it would be on that site for further information for you.

Hey Kendra,

That's scary...good thing you checked it out! Maybe not only will the lung problem get better, but maybe your MG will as well...just a thought. I hope your Dr. will be able to prescribe a med without such serious side effects and it's compatible with your other meds. Maybe you can double check and ask your pharmacist too. Good for you for finding this!

Hugs,
Pat

Mrs. D,
Thank you for this link. I have read through it am convinced this is the root of my lung problems. My heart raced all day yesterday and I am just hoping I don't have any permanent heart damage from this med. I was glad to see that it usually improves once the medication is stopped. That is very encouraging.

Pat,
Thanks. I too hope the ILD and maybe even the MG will improve once I am off the meds!!!
Kendra

Just for the record here.... another common drug used by MILLIONS has shown to be a cause of interstitial lung disease--

Statins to lower cholesterol. So if one is taking one of those and then adds on another med with some risk, the result would be larger I would think!

http://www.ncbi.nlm.nih.gov/pubmed/18689579

Let's hope discontinuing this drug for you, helps. But then the question of your elevated platelets, remains?

Mrs. D,
I am hopeful my Dr. will let me at least try taking an aspirin everyday even if it means having to have labs done every couple of weeks. I have read that as long the platelet count isn't over 750,000 some hemotologists prefer that treatment method. Last time I had mine checked they were 417,000. When I was DXed they were around 600,000
Thanks,
Kendra

Kendra,

Great discovery!! Wouldn't it be wonderful if there is only a 'chemically' induced ISL and MG and you could find another treatment for the platelets!!

Sue

Hi Kendra,

I've been looking into ILD too. It's really scary! You really, really need to find a cause and eliminate it! I hope you've just found the answer.

The reason that I've been looking into it as that I've developed some sypmtoms that make me wonder if I've got Sjogren's disease. It's another auto-immune disease which in some people can cause ILD. If removing this drug doesn't help you, you might want to google Sjogren's and see if it rings any bells. The other reason I've been wondering about Sjogren's is that my air diffusion tests came back abnormal. If you don't mind my asking, did you get tested for that? Is that what first clued your doctor in? Did you have a lung biopsy? I'm only just beginning to learn about this, so anything you could teach me would be great.


Also, my (shallow) understanding is that ILD is a sort of umbrella term for many different lung diseases (eg pulmonary fibrosis, for one). Do you know if I'm right about that?

I'm really sorry to hear you've had such frightening experiences. We really have to check and recheck everything ourselves, don't we?

Hang in there!

Ally

Sue,
YES that would be wonderful!!! I am so hoping I can find an alternative to taking the Agrlyin and that some of my symptoms will get better soon.
Thanks,
Kendra

Kendra,

I totally second Sue's comments. If you get off of this medication, and your ILD/MG go away, that would be a very happy day! I hope that happens. It sounds like you'll at least get rid of ILD which I'm sure would make you feel MUCH better!


Nicky