[Maxwell'sMom]

Hello my favorite Myasthenics...

I was thinking that maybe we should each give our experiences and knowledge of this drug so that others can understand and help themin making the discision about using this treatment for their MG.

When I was first put on Prednisone, it was literally at the Hospital after the Tensilon. There was no mention of Mestinon to me, just Prednisone. I really new nothing about it. Not until a couple of months after being on Prednisone did I realize that it was a dangerous drug. I kept finding articles titled..Prednisone..Good Guy-Bad Guy. That's when I started really reading. Truthfully, I was so bad off, that they could have offered me heroin in the hospital, I'd probably would have thought about it. I couldn't eat, lift a coffee mug etc. it was awful. I slept all the time.

Now, Prednisone, made me stronger, I could eat, lift things, no more spilling hot coffee all over myself, I had many benefits from it......But I only seemed to get stronger to a certain point, and couldn't go any further. I had been warned by others of the bad side of Prednisone, but truthfully by that time my body was already addicted to it.

Prednisone has caused me to have type 2 diabetes, weight gain/puffiness, moon face, I may be having adrenal problems because of it..jury is still out on that one, in the middle of fully finding out what is what with the kidneys.
Once a person is on Prednisone, I think it's 7 days, your body needs it, as your adrenal glands shut down. Because the body normally make Prednisone, about 2.5 or around there. Anything higher is considered a massive dose.
Once weaning off prednisone starts, it Has to be very slow to wake up the adrenal glands, and for a few, they don't wake up, and have to take small dosages of pred for the rest of their life.

The less serious issues are, severe sweating, some crave food, and can't stop eating. I didn't get the horrible appetite problem that some get. If anything, for some reason, I went the opposite, no appetite, and when i do crave, it's for Tomato soup, or anything high in Potassium.

The neuro I see at the MDA said he hates Prednisone, and really hates to prescribe it. he's the one who is weaning me off of it. So far so good.

If you have any questions ask away, and please add, or correct anything I may have been mistaken on, or left out.
love lizzie

[littlewish]

Prednisone has also caused me to have type 2 diabetes weight gain/puffiness, moon face i have taken Prednisone for 3 years straight and then weaned off . 2 years no Prednisone but the type 2 diabetes never went away now i am back on the Prednisone and have been on it going on 2 1/2 years and the diabetes is now getting out of control also starting to have problems with my kidneys and have gained alot of weight and cant seem to take it off i wish i had never started the Prednisone but you are right it does work without it i feel i would have been in and out of the hospital it has helped me to get stronger but yet if causes so many problems

[loisba]

Good thread, Lizzie! I was never put on Pred, but another corticosteroid, Dexamethasone. It put me in the hospital in a crisis. During the week I was in the hospital, I developed every side effect possible, I think. I was unrecognizable. My face swelled up like a full moon, my ankles swelled, and I've had pitting edema ever since, though I had never had edema before the steroids. Plus I never recovered my pre-steroid level of fatigue. It was as if the steroids had 'burned out' some of the receptors, and left me with greater fatigue, especially of the breathing muscles. I would never, ever, ever take steroids again. The next time they would probably finish me off.
Hugs,

[Maxwell'sMom]

Hi Littlewish,and Lois,
You know my regular neuro, doesn't seem to mind Prednisone,and then every other doctor I've seen, has had their eyes bulge out a bit when they see how long, and how much I've had to be on Prednisone.
Unfortunately, I do think right now, it's a necessary evil in treatment, but when I look back, I'm not completely certain I would have started on it first. I would have like to just try Mestinon, or anything else. I'm really glad the Neuro muscular specailist is getting me off of Prednisone.To those who are just beginning treatment, or are on the verge of a diagnosis,...... Before getting on it,please please, read as much as you can about it. Educate yourselves. It's so hard to get off of it, once you've been on it for a while.
Love Lizzie

[littlewish]

You are so right, if i had to do it again i would not even have started ,and like you said it is so hard to get off the Prednisone people do need to educate themselfs to all the side effects of this drug

[mamalori]

Unfortunately when I was started on prednisone I was in the hospital in a severe crisis and highly sedated. My husband (now ex) was informed of the side effects and risks and decided to allow them to put me on it to help save my life. I was very near death at the time. Cyclosporine had caused my body to have an adverse reaction and caused multiple strokes on both sides of my brain. I was on a ventilator and feeding tube. I had no input in the decision. If I had known how difficult it was to get off this drug I may not have allowed them to start it. That was seven years ago and I am just now down to 10 mg/eod from 100 mg/day. I have been up and down on the dosage over the years. I initially had lost close to 100 lbs. but put it back on very soon after starting the pred. I then lost 70 of those pounds but have put back on 20 of those. Because of the prednisone I have high blood pressure, high blood sugar (but not considered diabetic), ammenorhea, tooth loss (have to get dentures now - I am only 41), and it has caused my veins to shrink and they collapse whenever they try to get blood. I have a love/hate relationship with this drug. I love that it has kept me breathing but hate all the side effects. I think the decision to go on this drug is very individual and depends on the severity of your MG.

[Mommyof2]

Thank you very much for the information. My Neuro advised me to go on prednizone just this past Thursday. He kept advising me that my Mestinon is not lasting very long, I'm taking 11/2 that only last for about 3 hrs or less. So, he said I am better off taking prednizone on top of that. I had my doubts. So I told him, I'll think about it. Over the weekend, I was experimenting with my mestinon and went up to 2 every 4 hrs. It worked, aside from a little bit of stomach cramp. I was so happy, I called him and told him of the result. He said that he still recommends the pred as taking too much Mestinon is toxic. He said that I have to stay in the hospital for 3 days to be monitored. When I told him that I can't just take off work just like that, he offered to do it as outpatient. I'm supposed to call him this Friday to see how the 2 tablets are working. I'm pretty sure, he will again suggest the prednizone. After reading what you guys went through. I know what I am going to tell him. I am forever grateful to you all!

Does anybody have positive experience on herbal meds or acupuncture treatment?

[The Canadian]

I've never heard of too much mestinon as being 'toxic'. I take 60mg q 2 hrs (waking hrs) and that's because I'm in a relapse right now, well, the last 4 yrs. Before that, I was on 60mg q 5-6 hrs. I started on prednisone in 2001 but only because I was having breathing problems. I desperately want to get off the stuff. CellCept didn't do the trick for me and now I'm hoping that I'm a candidate for the immune reboot procedure at Johns Hopkins. I'd suggest to your neuro about trying CellCept or Imuran before going prednisone.

Jennifer in Ontario

[loisba]

I've been taking Mestinon for years, and have never heard of it being toxic. Pehaps he was refering to the fact that one CAN overdose on Mestinon. the only real drawback I've noticed to mestinon is that over time your body can become adjusted to it, so that you need to up the dosage to get the same effect. I've found that coming off the Mestinon for a time, perhaps several days, lets you sort of re-set everything. Of course, with my relatively mild MG, I'm able to tolerate a couple of days without Mesty, where someone else probably couldn't.

[Mommyof2]

I talked to my Neuro on Monday, and he still suggest taking prednisone. He's saying that it's better to take a small dosage now than wait until I become worse. My real problem right now is my speech, which does not really bother me that much, just annoying at times. People I talk to understand me fine, I rarely have to repeat myself when I talk to them, just very nasal. I'm torn and I would really appreciate any feeback. I don't want to take it because of the possible complications/side effects. On the other hand, would it be better to find out now how I will react to it, than wait till I don't respond to mestinon anymore then find out that prednisone doesn't work? I have one week to decide.

Help!