Saw my Hemo today
 

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

saw my hemo today
 

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.

Annie,

I did not mean to insult you by what I said, and I am sorry if I did. I am not aware of ITP causing a high platelet count, but am ready to learn if you know differently. just like I expect neurologists to be ready to learn from me, even though I am not a neurologist.

in the modern world, it is quite possible for a highly educated patient to know more about a specific aspect of his/her specific illness, then the physician taking care of him/her/.
there is an enormous amount of information that is available to all. I keep on saying that physicians should be ready to listen to their patients, and be ready to check what they say, and if they think it is wrong, explain why they think so. no physician is god, and many mistakes they make are not a result of lack of knowledge or experience, but out of arrogance and not being ready to listen to their patient.

alice

I'm not angry, Alice, just wanted to clarify that. Someone close to me had ITP (and they could not control it). And quite a few lupus patients get it. It's mainly an issue with low platelets but they can be high at some points too. It can be a real nightmare and hard to predict the course of it.

Even though I'm more educated than a lot of people on medical issues, from the "battlefront" and from books/background, there's no way I'll ever know more than a physician. I do trust my instincts though.

Kendra, I just don't want your docs to miss anything.

Annie,

without knowing the details of that specific patients, I can't comment of course. and you are right that in some patients ITP can be very hard to control (just like any other autoimmune disease).

although, we at least don't tell our patients that it is due to some "ill defined emotional problems" that neither them or their loved ones are aware of (sorry, couldn't help adding a bit of sarcasm).

ITP means immune/idiopathic thrombocytopenia. I believe that the elevated platelet count your friend had, was not the result of the illness per-se, but more likely due to inflamation/bleeding/iron deficiency, that can lead to increased platelets. probably, at that time the ITP was under control. in fact one possible treatment that is being considered in refractory ITP, is to mimic the situation caused by such stimuli, in order to increase the platelet prodction to overcome the increased destruction.

physicians are not always aware of the fact that patients can have more then one process going on, and that one pathological process can "normalize" the other.

I once had a patient with polycytemia, that I managed with periodical blood letting. at some point he seemed to "stabilize" and his Hgb. was near normal with no intervention. instead of being happy about it, I sent him for an emergent colonoscopy, because I realized that he has to be losing that blood somewhere.

or one of my patients with a long time anemia, was admitted to the hospital due to malaise and weakeness. she was discharged the next day, doing very well, and even her Hgb. was completely normal . when I saw her, I stopped the diuretics (started by her GP a few weeks earlier), as I realized that it made her dehydrated, on the verge of going into renal failure, and that was the cause of her "unexplained" weakness and malaise, and the "normalization" of her Hgb.

I am sure that there are occassional cases we all miss, because it is not always easy to think about everything. and that is why the patient and his family are so important, as our partners in alerting us to details we may have missed.

recently one of my patient's daughter picked up something that I have overlooked. being there with her father everyday (as opposed to me seeing him weekly, and not always recieving all the information from him).

and as I have been reading Kendra's posts, it seems that she picked up the connection between her treatment and the new diseases that she got, and fortunately her physician was ready to listen and act accordingly (as opposed to some neurologists I have encountered). possibly, it would have taken much longer had she not done that.

alice

saw my hemo today
 

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

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

Kendra,

I am so happy that you found out about the side effects of Agrylin and am hoping that your MG symptoms decrease and that you feel better.

:hug: