when i was first on predisone my neuro said it would make my life so much better and after 4 months he said my double vision would also get better
and it did last was the double vision it is so much better now i just didnt know the price would be so high for me i was put on imuran that was my one big hope that i could once again lead some kind of normal life but it didnt hapen i had a bad reaction to the imuran so my neuro said to come off the preds so after a year i did thou i have started to have (a high risk of )Gloucoma im hoping that it will inprove now that im off the preds my blood presure became much worse i also started having swollen feet and legs and hands then my little bit of psirisis went out of control not to mention the weight then the severe knee pain has come back may soun bad but im happi that i can manage with out any drugs at all and the preds did make my life so much better i'm not sure how long i can go with out drugs i will just have to see and what my neuro thinks my new goal is to loose some weight
and that takes time
alan

Hi sweetheart! I'm so very happy you were able to get off of the pred - it is brutal but necessary sometimes....

The weight WILL come off. Don't over do it and hurt yourself...I know I'm a HUGE hypocrite but I care about you!

Before you know it you'll be jetting off to see that beautiful grandbaby of yours and hold her for the first time - oh what a feeling!

I am so happy for you!

Love,
Erin

I am so glad you are off the pred, I know it helps but I used to say I didn't know what was worse, the MG or the pred side effects..LOL

The weight does come off but it takes time, just remember not to over do it and you will see.

I hope all continues to improve!

Hi Alan,

I'm so glad that you are doing pretty well drug-free! I'm sure that the weight will come off in no time, your body just has to do all its readjusting. The body's a resilient thing, so that'll hopefully be very soon!

I wanted to ask you something...I know that I'm a bit obsessed with the moonface, but it really is brutal...Anyway, is yours gone now? I heard that's one of the first things to go...Also, how is your wound-healing? I get cuts and scratches, and it seems like an eternity before they heal, in fact, they tend to scar. What are the main side-effects that you've noticed have disappeared since you stopped?

Ttys and keep on keeping on!
Nicky

Hi Erin
yes thats my dream to fly to Australia this year but first i'm going to have to loose a lot of weight its 17.3 but im not going to starve just continue to eat healthy and exercise as much as i can my body is very good at telling me ive over done it i do listen like you do ha ha !!!!!!!!!!!
the preds do their job but the side effects are hell !!!!!
nicky the moonface went first after 6 weeks at last looking in the mirror wasnt a nightmare felt good ive never had any problems with cuts just a huge tummy and tomorrow i find out whats wrong with it from my Dr
after stopping the preds i got my knee pain back thats worse but can be sorted latter i never thought it would be possible to manage with out any drugs and weight lost will be helping me i'm hoping!!!!
alan

After being on pred for a very short time (october 12 ), to christmas when I reviewed my situation and decided to stop the pred and all its accompanying drugs I synpathise with your situation.
I am not due to see the neuro until mid march.
Since coming off my blood pressure has returned to 125/80 ,my blood sugar is on its way back at 6.0 now from its highest at 17.6
My thigh muscles last week had pains but are now gone .
This week it has been my upper arms and shoulders .
Feel 100% better with no neck,shoulder and back pressure.
I am returning to work next week I feel that much better.

no more prednisone for me either.I'm new so hope this is the right thing to do...I'll learn and I'm so glad to have folks to vent to...

Hey Alan,

So happy to hear you're off the pred. I hope you continue to do well without the meds. The weight will come off slowly but surely. Take care and please keep us posted.

Hugs,
Pat

Alan, I hope you will do okay off of the Pred too. Can they try other things for you like IVIG?

Sodium and no sugar are great for losing weight. The other thing that really helps is high fiber/low fat. Can you eat beans? Fabulous food and there are so many kinds of them. Like garbanzo beans in hummus.

Little things like using hand weights or those rubber bands a few times a day and only for a little while each time really does help.

I hope the weather over there has settled down. You guys had some bad snow there for a while. It's been godawful cold over here.


Annie