Quote:
Originally Posted by dog lover
Alice,
I so appreciate your input. I honestly hoped as an MD you would respond. Are you a Hematologist yourself? I really hope you are right that I may be the first to have MG brought on by Agrylin. Like I said in my other post my Hemo believes the ILD was Agrylin induced but doesn't think so with the MG. I just keep thinking about how one of the side effects is extreme muscle weakness, which is basicly what MG is and how hard it is to get diagnosed sometimes. I just wonder if patients are telling their Drs. how weak they are but MG is not even thought of. If you are a Hematologist I would love to hear any thoughts you have on this possibly reversing itself or if you even think I will see improvement since the Agrylin has been stopped.
Annie,
Yes my platelets are too high. My Drs. have always been very proactive in my care of the Thrombocytosis due to my moms history. She had a stroke at 37 and was then diagnosed with Polycythemia. Around 1998 it turned from that into Milofibrosis. As the disease prgressed her spleen continued to enlarge and in 2002 she had a spleenectomy. Her spleen weighed 13 pounds! She survived the surgery but died of a blood clot 6 weeks after her surgery. My Drs have always said their main concern is that my disease could turn into one of the 2 my mom had. The JAK mutation test will let me know if that is something I need to be concerned with or not. Part of me is terrified to get he results of this test but I know I need to know even if it isn't the news I am hoping for.
I hope I answered all the questions that you and Alice asked. Thanks so much for the info. I truly appreciate it.
Kendra
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Kendra,
I personally did not like using agrylin in my patients, because I was not convinced regarding its risk/benefit ratio. the first studies seemed to be extremely promising, but the post-marketing info. was less convincing. so I do not have much experience with it. I know there are hematologists that do use it quite a lot, because it is not chemotherapy. and also it may still be beneficial in some patients. as you probably realized by now, medicine is not an exact science.
I don't have any info. that agrylin can cause MG. it's just that I don't think we can know for sure that it doesn't. so many things are/were known for sure, and ended up being wrong, that I can't ignore the fact that both your ILD and MG occured after being put on agrylin, so how can we know for sure that it did not contribute to it?
many times an adverse event of a medication will be recognized as such, only after a significant number of patients, beyond reasonable stastical chance developed it/ and or it was shown that it reversed upon ceasation of the medication. some adverse effects are reversible and some are not.
I am sorry to hear about your mother and do hope that your course will be much more benign. as your hematologist probably explained to you, we can stratify patients according the JAK2 mutation status. and those that do not have it, do tend to have less thrombotic complications. but I can understand your and your hematologists concerns.
I am or in a way was a hematologist. I keep on talking about my work, but to be completely honest, it is unfortunatley very limited patient-care wise, for the last two years, and when I talk about my patients, it is mostly the ones I had. I can't take care of patients that require physical abilities. can't go to see them in the hospital, can't put in lines, can't many things...
I try not to think about how it could have been if.... and make the most out of what I can do, which is mostly intelectual work.
sorry I can't be of more help.
alice