update...Rituxan...and such
 

Hey everyone, just wanted to let you all know I'm still around. Lol, Saw my neurologist last week and I guess he said I am still weak, but ever so slowly improving. He said that Rituxan could take up to 6 months to show full benefits. Lets see, my swallowing has def! Improved.
Speech is, eh on and off still.
My eyes were wide ' will talk about that in a sec'
vision, doing good. no double since Rituxan.
Neurologist ordered 5 more IVIg's for next week, each day.
Side effects of the IVIg will be well worth it...

Now he is having me taper, wanted me to taper 10mg of Prednisone...But I decided on my own to do 2.5mg taper which I started on Sunday.
Now thing is here, I do alternative days. 50/10mg and I tapered on my Big 50mg day...Even with that small dose of taper I can feel the effects of tapering. where before I wasn't so weak feeling It just hits me...So totally weak feeling right now. Yet thank and Praise God I still have my swallowing and speech today...
My eye is drooping again. My ears feel clogged...
and o my am I feeling exhausted. Like boom! Total exhaustion. Wanting to sleep all the time.

I simply cannot wait for the IVIg's next week! Plus hoping he continues the Rituxan because It is working. I actually am gagging again when using the tongue scraper. I hadn't had that in soooo long! Its now the Taper thats bringing me downhill.

Quick question for everyone that has tapered Prednisone...
How long did the effects of tapering last? A week, a few days? Longer?

Thanks for reading.

Lisa

I have been led to believe that if you taper to fast you have to start all over. I am down to 15. it's taken me over a year to get to 15 from 80.

Lisa, How long have you been on Pred?

I believe it's very important to do it 1) surely but slowly and 2) and tiny baby mg's down everytime.
My neurologist said to me: you can try to go take off 10 mg immediately, not even alternative days! (after over 2 years same dosage!) I said, thank you but not really interested in an Addison crisis meets MG crisis situation.

If you're on prednison for a long time, even a tiny step down can cause multiple feelings of bwaaauuuhhh. As long as it's not the MG kicking you down, you'll have to give it a few weeks and hopefully your body will adjust. But, please keep in mind to take it slowly (like you're doing), and if you're having bad MG symptoms call your doc. It's kind of hard to see if what you're experiencing is "just" overall weakness and exhaustion as a reaction of less prednisone, or if it's really MG taking his chance.


I hate prednisone taper. My hardest was around 15 mg (17,5 -> 15 mg) never been lower, and I guess if I can it will be even harder.
For me it's always a few weeks a hard time.

Oh, and are you on any diabetes medication? I have steroid induced diabetes, and had to think of it myself to taper down diabetes meds too. Surely, hypoglycemia doesn't really help.

Good luck and take care.

Thanks for the responses. I have been on Prednisone for about a year now, I tapered down from 60mg daily to the alternate days of 50/10mg...They tried to get me to do a 0 day but man It took me down so bad that I needed the IVIg's because I was sooo terribly weak. So we are trying the bigger day taper, he did want me to do 5mg taper but I decided myself to do a 2.5mg taper because it was soo vary hard last time.
Not diabetic, they just tested my sugar levels last week again. I really haven't gained a lot from Prednisone. Just a moon face, and the mood swings among a few other side effects.

Today, is the 5th day of the alt. day taper and I feel a wee bit better. I think the beginnings are the hardest. Of coarse a taper is going to flare MG a bit, I think anyway. Just hopefully not to the bedridden or Crisis point. With my IVIgs coming up I am def going to taper another 2.5mg next week or the week after depending on how I am feeling....the constant ups and downs...we all know how that feels.

:hug: to ya all.
Lisa

Hi Lisa,
I felt the tapering effect for about a week whatever the pred level was.
I have been sticking to my own tapering rule :“Never more than 10 % at any one step“...
Good luck to you!
Maurice.

Got really nauseated last night and totally weak last night.I couldn't even hardly put my house coat on. Couldn't press my lips together again. Couldn't talk... It just hit me, like bam! This happened last time I tapered Prednisone, some nights I would be okay other's that would happen. Also even with Rituxan I am relying on Mestinon due to the Taper I believe. Before I started the taper I was doing okay I thought. But I guess it's worth it, getting off Prednisone. I survived with MG without it for 2 years before my aspiration Pneumonia hit. Then they pumped me full of steriods...Ugh, been on it for a year now.
The nausea and bad weakness last for 1-5 hours...Then it tapers. So strange. Anyone else get that?:eek:

Lisa, It sounds to me as though you're a person who has to do a snail's crawl taper. You are having what sounds to be an adrenal crisis any time you taper too much. It might fool you into thinking that it's MG weakness. You get weakness from an adrenal crisis, too.

You should speak to your doctors again. You can't push this. You might have to resign yourself to the fact that it could take a year to get off of Pred. Even when the Rituxan kicks in, you would still have to have a slow taper because this isn't about MG, it's about the adrenal glands.

That "zero day" BS they try to do is insane! That literally gives you a drop from 50 to nothing. It could kill you. I wish doctors would stop even thinking that's an option. They nearly killed one of my friends doing that.

I'm really sorry you aren't feeling the effects of Rituxan yet. It shouldn't take 6 months to kick in! Again, the weakness may be from the Pred withdrawal and not MG.

Do you have droopy eyelids? Is there a way to physically check if it's MG or adrenals?

I really hope you can work your way to a remission. I hope you'll be okay!!!

:hug:
Annie