[Nicknerd]

Hey guys,

Oddly, despite tapering off my prednisone BIG TIME (much faster than was recommended by my neurologist), I am feeling much better lately...My regular neuro. wanted me to remain at 50mgs/0, as did the second one I got a second opinion from, but I know that it isn't really doing any good for me MG-wise...It has taken care of the arthritic and allergy problems I had gotten used to, but not the MG...So I went ahead and tapered from 50mgs to 30mgs, and I haven't noticed anything- that was a couple of weeks ago...I let my regular neuro. know about this (in case anything bad were to happen)...Some (in terms of intensity) of my arthritis pain has returned, and my allergies have come back (itchy. pimply arms), but I'm okay with that...I can deal with it...By the way, i don't recommend doing this rapid tapering...It was going against my doctors orders, so please, no one do the same based on what I've said...Most people do very well with prednisone who have MG (in terms of taking care of a lot of the sx)...I think that I'm an odd exception! lol

The dosage of prednisone I was on basically turned me into a hermit...I felt more weak from it than before I took it in many ways, it made me crazy, made me look crazy, and all the other things that go along with it...I now am super vigilant with my mestinon (which I wasn't really before, I have to admit), and this helps...i still have periods of intense weakness, but this is no different from previous times when I was at 80mgs of prednisone, so might as well get rid of 3-4 existing/possible diseases, and stick with just the one...

Anyway, I started Imuran almost a month ago, and haven't really had any problems...I've been having intense headaches, but I get them in the morning, especially when the weather's been very warm, so I think that it's from something else....I mentioned it to my neuro., and he said to just take note of it, and if it gets terrible, to let them know (it hasn't been terrible yet)...

I was wondering if I could ask a favour of you guys...Are you guys who have taken/are taking Imuran able to list when you started taking it, what dosage, side-effects, and intensity/type of weakness you experienced from MG prior to starting it, and what it took care of (in terms of the MG) at the peak of your treatment? Also, if it's worth it to you to have taken it, and so on...I'd really appreciate it!

I hope that everyone's doing well...I noticed that a lot of the usuals aren't posting as much lately...I hope you guys are doing good where you are...I miss seeing everyone's posts!

Nicky

[Melisma]

Hi Nick
Prednisone can make MG worse at first, or if the dose is too high.
I started pred 25mg and Imuran 100mg following IVIg over Christmas along with Mestinon.
Pred was reduced from 25mg to 20mg six weeks ago and will reduce by another 5mg tomorrow, tapering right off over the course of the year. Improvement was noticeable after about a month and I've been steadily improving since, able to reduce Mestinon from 420mg/day to only as required which is hardly any. I take high dose calcium with vit D to offset the calcium reducing effect of pred.
All the best
Marian

[DesertFlower]

Nicky,

I am glad to hear of your improvements.

I also have skin allergies which have gotten worse since I got MG. These are really bad right now and I am trying to figure out what to do. I have a new skin problem, I am getting bumps and pimples along my shirt collar and on the waistline of my pants. New detergent allergy? I don't know yet. I relate to your skin allergies. When I got my skin tested for allergies I am pretty much allergic to everything and I don't want to go back to the doctor for these allergies because the doctors don't have any long term help for me. Good food and sunshine seems to help more than anything the doctors have had me try.

The funny thing is that my other allergies that gave me runny nose and itchy eyes seem to have gone away, all I get is the occasional sneazing. Is it the Mestinon helping?

I haven't been posting much because I did some extra work last month to try to catch up financially and now I am paying for it with weakness, but luckily nothing serious, at least not quite. Now I am in resting mode and only working 2 days a week again until I save up more energy. Before I did the extra work I was feeling very good and went for a hike to see the wildflowers - wonderful, my first walk in the wild since last May! But now, I am back to feeling bad and wishing I didn't have to work more than these 2 days per week... And I did the dumb thing of buying some quick meals because I was tired and now I feel even more bad.

Sorry for the feeling sorry for myself stuff...I think we all go through times like this.

I hope the imuran helps.