Originally Posted by tysondouglass

Annie- I completely feel you on the Accutane and Prednisone aspect, yet they do know I am on it, and when I went in yesterday, they asked if I was still on it. They said it was not an issue...so should I still call my pharmacist? I see where your coming from.

Yet this is how my appointment went..

He did the usual testing, pushed on my shoulders, made me look at his finger, etc, tested my leg strength. Then told me he didnt think the prednisone was working, but still wants me on it another month just to make sure that its not going to work. Because the plasmapheresis is worn off as of now, and im having trouble getting up the stairs, and such. -just trying to clean my room today was hard...

Yet he discussed options of Cellcept and Imuran after this next month w the pred. not working.

For the short term, so i dont go into resp. failure, he is trying to get me set up with plasmapheresis next week for 6 sessions to help w the bad symptoms that im having right now.

Hes hoping that the thymectomy works, yet as you guys know it takes a while to see.

But the thing that he said that bothered me the most was; "with some patients, they can excersize and maybe they'll have a bum leg, or eye after, for thats all this disease affects them w. Yet, you arent allowed to excersize AT ALL. No yoga, no walking, no running, no lifiting weights, no nothing, for I think its a life or death situation here, and you need to take this very seriously. If you push yourself, or even walk too much, you could without symptoms, have your lungs shut down, and not have time to get to an ER, and die. This is uncommon, yet your a patient that has to deal with it.'

So that was hard to hear, as you know I WANT TO BE ACTIVE. Its so hard! UGH.

Its so hard seeing all my friends go play basketball, and club soccer that im supposed to be on, going to all these tournorments and stuff and having to watch. And sit home and be a couch potato.

He says, usually in the patients that he treats their usually 60, and dont care about being a couch potato. But i do. im 17. I want a life. Its hard going through a regular school day. But now knowing that this disease could kill me, ****** me off even more.


Annie- about the pulmnologist, I WISH he would listen. I asked my neuro at UNC, (different than my reg. neuro) for a referal, he said no, because i didnt need one. Though my reg. neuro is getting me set up with a specialist at Duke, hopefully soon. They will probably have a pulm team to check me out at that app. Yet i dont know when that'll be..


Thanks for caring everyone. Im trying to deal with it. But its so hard.

I hope you all are doing welll