Jessica
So glad you are getting relief, no one likes being on these drugs, but if they help your quality of life so be it !

How long does it normally take for you to feel better after starting prednisone? I have been on other treatment for MG but for some reason over the last couple of months it isn't working like it used to. I am thinking about going the prednisone route but am still unsure because I have had flare ups of MG in the past and it has always calmed down eventually without the use of Prednisone. This flare is lasting longer than usual so I am in a little pickle right now.

My neuro wants me to see a MG specialist at the end of the month for a second opinion on my treatment plan so I have until September 30th to decide if I want to try prednisone. I guess the hospital stay, the "getting worse before you get better" kinda frightens me a little bit as well as the possible side effects of prednisone.

I'm so confused.

Hi Shari, I would wait and see what the specialist says. If you can avoid going on prednisone that would be great. Although Prednisone can work wonders, it is Not with out dangers of it's own.
The down side to it is, once on, it's very difficult to get off. After being on prednisone for about 7 days, the body "has" to have it, as the adrenal glands shut down, and have to be slowly wake up again. And sometimes, after a long time on it, the adrednals don't want to wake up.
I've had prednisone be blamed for Pulmonary Hypertension, and of course diabetes, high blood pressure, weight gain, and although so far I'm good, it can cause bone loss.
These are just a few things, please read as much info as you can before making a decision.
On the positive side, Prednisone has given me a little of my life back. I'm not as weak, I don't collapse with fatique. I'm able to get the laundry done, and some work around the house, and most importantly, double vision doesn't happen as much, and breathing is much better on prednisone.

So, I guess what I'm saying is for me, Prednisone has put me in the preverbial 'between a rock and a hard place' . I've been on prednisone for well over five years now.
Some people don't have hardly any problems with it, others have a mountain load of issues while taking it, and many are inbetween . Unfortunately, I'm one who has had many other medical issues because of it, but I need it.
Educate yourself as much as you can.
Best of wishes to you, and please give an update on what you choose, and what the specialist says.
Love Lizzie

Thanks Lizzie,
Everything you mentioned is the reason why I am trying to do everything in my power not to begin prednisone therapy. I tend to have a bad MG flare up every four years or so but am really baffled as to why I had this one considering that my treatment plan for MG for the past 4 years has been pretty aggressive. We have increased my cellcept dosage from 2000 mg to 2500 mg daily and now have bumped my IVIG back to once a month instead of every 6 weeks. I also have increased my mestinon dosage a little as well.
It's been a couple of months now since my MG symptoms have come back and they are still hanging around so I guess I am just a little impatient about getting them under control again I tried a different IVIG brand the last couple of times and I am going back to the one I had before. The new brand left me feeling worse with side effects than my old one and it doesn't apppear to be giving me the benefits that I used to get. But prednisone really scares me because of everything you said.

I can say this, the intensity of my weakness is not nearly as bad as it was a couple of months ago so maybe I just need to relax and not worry about it so much. My husband keeps telling me to take it one day at a time as I have done in the past. I guess I just got spoiled to feeling "normal" for so long that it is hard for me to adjust to feeling like this again. I am still not as bad as many others who post on here so I am really thinking long and hard about the prednisone therapy.

I just want to get back to being able to do things with my husband and kids instead of being afraid to do anything because it might make my MG worse. I am not living right now, just merely existing.

Hi Shari! Prednisone is really hard on the body, but for ME it was well worth it! Being able to make dinner or clean my home makes it worthwhile!

I won't lie. I no longer look like myself. I have had many side effects from the prednisone. I am up to 170 lbs. I have acne and shake like a leaf, but I can get off the sofa again! I MISS the "old" me, but I am HERE and know that the side effects will go away pretty soon!

My Gram had a heart transplant back in 87 and was on MASSIVE amounts of steroids, but she DID look like her "old" self after a few years.......

You really need to weigh the pros and cons. I know that most of us feel VERY strongly about steroids.

Believe me when I say that if there was any other way for me to feel better minus the roids I'd do it, but I am pretty steroid dependant......*sigh*

Hang in there!
Erin

Hey guys,

My hematologist said that my diabetes is borderline, and I should be able to manage it with diet...He told me to monitor it in the morning and a couple of hours after a meal...So far, it hasn't been too bad...Also, I think that my neuro. might reduce my prednisone because of this, so I'm kinda relieved....Taking prednisone is kinda too scary for me, I think...There are just too many new diseases/infections to possibly contend with...At least with the MG, there's just the one...The infections thing scares me a lot...I might search the internet too much, but I'm always finding these articles about people getting brain infections because of prednisone, and it's kinda too scary!

Nicky

Nicky,
That's good news about the diabetes! Was worried about you. Even if you can't lower the pred right now, at least you know you can impact the sugar levels adequately enough through diet for now.
Sue

Forgot something......the pred made me feel better IMMEDIATELY! Granted it was prolly b/c I was also receiving MASSIVE amounts of IV IG and fluids, but really and truly the very next day my speech problems were gone! *poof*!

Hope this finds you strong and happy!

Love,
Erin

Hey sweetie! Whatever you decide about pred, please do not stop taking it cold turkey. It is really dangerous!

How are you feeling today?

Love,
Erin