I just wanted to update you all on my appt today with my Hemo. Overall it went well although I spent more time with him today than ever so I know he is taking this very seriously. He did a CBC which came back pretty good overall. I do have some low and high counts but he is sure they are Pred related. My platelets were up to 485,000 which is still good but quite a bit higher than last time I had them checked. I asked him if he thought the ILD would reverse itself since I am off the Agrylin and he said he honestly didn't know. This is a pretty recent finding and they haven't done enough research yet to see if it does reverse over time. I also asked him if he thought it was possible the MG was brought on by the meds and he said no. I was a little disappointed to hear that because I kept thinking if it causes severe muscle weakness maybe these people have MG and don't even know it. I guess only time will tell how much I recover from the Agrylin but he agreed I can never go on it again. If we can't keep it under control with aspirin then I may have to go on a chemo drug used to reduce platelets. My fingers are crossed that I don't need that. I tried that drug several years ago and my hair started falling out!

He also ran a mutation test to see if this has the potential to turn into Polycythemia or Mylofibrosis. I am so glad to have this test done since my mom also had both of these blood diseases. He said if it is positve he will treat it much more aggressively than if it is neg. I am scared to get the results of this but it can't be any worse than not knowing.

I know this may be off topic since this is an MG forum but just wanted to let you all know where I was at with things. I hope all of you are doing well!
Kendra

Hi Kendra,

I'm so happy to hear that your hemo is taking such good care of you.

Maybe this is stupid advice but try not to worry about the test results. There's no sense in borrowing trouble - we have enough of that already, right?

Take care and I hope everything works out for the best!

Ally

Kendra,

Thanks for the update - - your hemo sounds very thorugh and appropriately concerned.

I hope the aspirin will be all that is needed - and, who knows, maybe the MG will calm down without the Agrylin. I do hope so.

Sue

Hi Kendra,

sounds like you are being taken care of by a thoughtful Dr.
I can understand you being scared to get results, how long do you have to wait?
take care
Kate

Sounds like a great Dr. You are lucky to have him. I hope all works out well. It is sad how we with MG have so many other problems.

Hey Kendra,

I'm so glad you have such a caring thoughtful doctor. I sure hope the aspirin will solve the problem. Try not to worry to much about the test results...I know that's easier said than done. Take care and I'll be keeping good thoughts.

Hugs,
Pat

Kendra, I'm glad you are getting some answers. So many things can cause a high platelet count. Mine has been high a couple of times. Has your doctor thought about ITP (idiopathic thrombocytopenic purpura)?

http://emedicine.medscape.com/article/779545-overview

I have known people who have that and have a family history of it and other autoimmune diseases, like lupus.

It's great that you figured out what that drug was all about. I hope things get better off of that drug. It can take MONTHS to see the effects of a drug wear off. The body needs time to adjust.

I hope you are doing some fun things to keep your mind off of it all in the meantime.

Annie

Thanks to all of you for the support!!! I just love that about this group of people. Yes, I do have a fabulous Hemo who is so thorough.

Kate,
I'm not sure how long it will take to get the results. I see him again in 4 weeks and don't know if he'll go over them then or if they'll call with them before.

Joan Marie,
It is very sad that we all seem to battle more than just MG. It can be so overwhelming at times. I have to say that I always love reading your replies to everyone. You seem to be at peace with this disease and I so admire that and strive to be more like you are.

Annie,
He hasn't mentioned IHP. I think he is more concerned with Polycythemia and Milofibrosis. I should have alot more info once the mutation test comes back.
The waiting is hard but then another part of me knows I've had this for years and haven't known so what's a while longer. I keep telling myself IF this going to reverse itself it won't be overnight. I just keep trying to take it one day at a time.
Thanks again to all of you for your replies.
Kendra

I know they sound similar but throbocytemia/thrombocytosis is too much platelets. and thromobocytopenia is too little.

fortunately, in hematology, gentetic testing is not considered "out of space" medicine, and is pretty much the norm. not only for diagnosis, but also for stratification of patients according to risk groups.

I hope your tests come back normal, and that you have significant improvment of both the ILD and the MG, upon ceasation of the medication. we don't really know if it could have been brought about by agrylin as well.

it is a relatively new drug, and you may be the first to have this adverse side effect. we know that many medications can lead to immune dysregulation and secondary autoimmune disease (many which fortunately reverse upon ceasation of the offending agent), this is relatively rare, so may be missed in clinical trials, so how can we know for sure that agrylin does not?


alice

Alice, Can you clarify who you were "talking to" when you said the following:

ITP can cause a high platelet count but can also cause a normal to low one, as I'm sure you know since that is your field of study.

Just wanted to clarify.

Kendra, Is the problem you are having too much or too little of platelets? If there is some previous post about this, I haven't read it. Thanks.