still feeling worse than usual- but not in crisis- how does your doc usually treat?
 

hi all- I've had MG since 2000. I'm on Mestinon and Imuran. Had a thymectomy in 2000; crisis in 2001- improved only after 6 plasma exchanges. Since then have felt worse on and off, but it usually passes within a few wks. Its almost 3 mos now- thank goodness, I can see, breathe, swallow..but my palate is weak after not much talking, and my arms and legs are weak. Have an appt with my neuro on the 31st.
Anyhow- I was wondering how your docs handle exascerbations which are not at crisis level. I have upped my Mestinon to 90 mg every 6 hrs (helps a bit) and rest alot..have done very little for several wks. At points I've felt pretty good, try to do a little more, and backslide.. Was thinking that maybe a change to cellcept from Imuran would help? Also not sure if plasma exchanges are done in w non crisis symptoms? Have heard that IVIG works only for short periods. Any thoughts? Thanks so much!!

Most take mestinon every 3 to 4 hours, for more consistent coverage. Is there any reason in particular you are dosing every 6 hours?

I would give the doctor a call if I were you. He/she may want to see you sooner than the 31st.

hi- sorry- I meant every 3 1/2-4 hrs, 6 times a day for the Mestinon. I called mid April- this is the appt he gave me. I'm not seen as an emergency.

Swallowing is a big thing too. The docs said that if you cant swallow its an emergency. If you cant swallow your mestinon then Erma...bad...

Well, in that case, it seems you do need some additional medication support. Talk to your doctor at your next appt, keeping in mind that Cellcept, Cyclosporine, Prograf, etc take months to show any progress. Prednisone can produce quick effects and if used wisely is a very good option. IVIG and plasmapharesis can be useful as well but are much more invasive--to both your body and bank account!

Good luck with your decision.

That's not necessarily true. Cellcept usually takes 3 months to see improvement, while Prograf takes one month, maybe less depending on how severe your symptoms are.

I've taken both. Hated Cellcept because it was making me dizzy, but still taking tacrolimus (Prograf) for almost 2 years now. The brand works great, this new generic (Hecoria) I give 3.5 out of 5 stars, but can't complain since they are the only company who will give it to me for free since my insurance company are being jerks. Good luck!

Cherry said, "...That's not necessarily true. Cellcept usually takes 3 months to see improvement, while Prograf takes one month, maybe less depending on how severe your symptoms are..."

Hello Cherry, nice to meet you. :) Another person from Florida, sigh. I am going to be envious of all of you next winter when I am brushing 5 inches<<<note American measures...:D of snow from my car!

Cherry, When I read the post from 4-eyes, and yours, I see you both saying much the same thing. "Months" could be 3, could be 6, and so on. When it comes to immunosuppressants, none of us is alike, therefore, we can't say with any certainty, when these meds will kick in. All we can do is hope it is soon. Much of the stuff we read on the net is..."generally speaking..."

Susan asked, " Anyhow- I was wondering how your docs handle exascerbations which are not at crisis level..."

Hello Susan, :) I've posted a link which will hopefully, give you and others, a hand. The article was written a long time ago, but still applicable today. I met the author, Jean Rhynsburger (wonderful lady) in the late 90s, when she so kindly flew up from California to be a keynote speaker at a Muscular Dystrophy Canada Conference. I've lost track of her, but I'll always remember her!

http://www.mgawpa.org/pdfs/How%20To%...0FatigueLH.pdf

My doctor told me to rest more when I feel bad. It sounds simple enough, but it is sometimes hard to do.

My Dr. usually gives me a set of IVIG treatments. Usually 16-24 at a time.
Mike