Prednisone
 

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

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,

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
:eek:

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.

re: prednisone
 

was put on pred because I have so many medical issues and my dr said she was going to put me on low dose 5mg and they have helped but I read about the symptons and have not really gained the weight yet but face feels odd and get dizzy but had the dizziness before that but as bad as it is .I can work now as to before she was going to have me quit my job but still going to go and see a cardiologist next month . hope they figure out what is going on . have IBS and fibroymalgia and wheat and dairy allergies and have had hysterectomy and spleem drained and gallbladder and appendix out all by the age of 35 now 38 and still seem to have problems .

[QUOTE=princess38;99328] have not really gained the weight yet but face feels odd QUOTE]

princess38, I know what you mean, I think. As I remember back, seems like my face felt odd, too, and looked odder. Everytime I looked in the mirror, it seemed to have swelled up even more. I came out of there with a full moon of a face.

I know this is an old thread... but I had Cushing's disease which is basically too much hydrocortisone. You can get it from taking steroids (then it is called Cushing's syndrome) but mine was caused by a pituitary tumor.
My tumor was discovered in 1992. I was not heavy then. But over the years, I came within 6 lbs of doubling my body weight (as well as other horrible symptoms). I had my tumor out in 2004. It did not cure me and I had to have my adrenals out in 2006. Adrenals are where cortisone is produced in the body. Now since I am cured, I have lost about 65-70lbs, but my muscles are... wasted. We thought it was from the Cushing's. Now I may have MG (had an abnormal EMG and waiting on other tests). My own body's overproduction of steroids may have been masking this?

The first thing out of my neuro's mouth was - oh well we can give you prednisone. NO WAY. I need to lose, not gain and not get any weaker. I just got my cheekbones back.

Old thread, but the problem never goes away, does it? Rumpled, there are other treatments they can give you, other than Pred. I would never again take a steroid! Have they tried you on Mestinon, which has been the old faithful of MG treatment for years? Other than my one disasterous foray into the world of steroids, I've never taken anything but Mestinon.
Hugs,

So far, nothing as not diagnosed. I started a new thread. I will ask for mestinon though if diagnosed. Thanks for the advise!

Thank God for you all!
 

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!:grouphug:

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

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

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.

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!

Three weeks after diagnosis of mg
 

I have just recently been diagnosed after presenting at A and E with heavy pressure on my chest like I was going to have a heart attack
Ecg was fine but o2 levels were low
Several weeks previous a girl who sits opposite me in the civil service in a call centre commented "do you you know by the end of the day your right eye is nearly closed each day.I thought you were having a stroke."
I checked it on the internet as ptosis of the eye a sign of of possible myasthenia gravis.
I had to go any way as an annual check to my opticions who immediately noticed the ptosis as I entered the room.
She gave me a letter for the gp
The Gp would have on the following tuesday following my entry to hospital on the friday night diagnosed mg from the blood tests.
The neuro saw me over the weekend and started me low dose prednisolone building to mgs a day by the time I left hospital after two weeks.
I have bone and stomach protection medicine to take with it .
With this I also was was started on mestinon 60mg every 8 hrs .
Before I left hospital I was doing some walking in the main hospital corridor and found the same heavness again.
Just last night I was late with the mestinon and the chest preesure returned and my throat felt as if it was closing until the mestinon kicked in after twenty minutes and cleared it completely after an hour .
I guess my diaphram is my weak muscle in this case:winky:

60mg in the morning first thing
 

I checked again today the throat tickle starts aroung four hours fifteen minutes .
After taking mestinon recovery starts in about 20 minutes and is fully recovered within an hour .
Because I was not sleeping in hospital at night I rarely got even with a sleeping tablet more than four hours sleep.
Now feeling I cannot afford to be asleep now more than four hours .
I am going to GP open surgery first thing in the morning.
At four hours fifteen today while I was doing my one task for the day in local store at the cafe tickle started and I could not speak properly to the assistant .recovery as above .

I have been on pred for almost 1 yr. now. Some side affects diminished after a few months. (nadea, upset stomach, lack of sleep and most sweats.) But I still have a swollen face and feet. My arms are always marked from bumping them and cut very easy. I have lost 10 pounds but my gut is 3 inches larger. Not sure if this is from pred or just lack of exersize because i've become so week. I am taking 120 mg every other day and I believe my neuro is going to try to reduce it when I see him in 3 days.. He want's me off of it.

I get IGIV 2 days a month and I take 300 mg of mestinon and 2000 mg of Cellcept a day.

I am feeling better most days and seem to be getting a little strength back.

Welcome Scrubbs!


I have all the same issues that you describe with the prednisone. I haven't really gained weight, but my stomach does seem to have an extra 3" of fat on it. I also have a ginormous face, with a bit of neck fat in the front and the seedlings of the buffalo hump. I've also noticed that the hair around the crown of my face is becoming darker sorta, or thicker, hard to tell...I've also got some acne, which I never really went through before...My blood sugar also goes way up from time-to-time...

I also experience increased pressure around my sinus area...I don't know if it's from the swelling in my face, but I've noticed that when the swelling is particularly bad, I have this pressure...Could also be from my weak palate...

I'd actually really like to get off of this...I don't see it helping me much...I's helped me a lot in terms of developing Cushing's syndrome, but not much with the MG...In fact, I've noticed more muscle weakness in my legs and arms since taking this and slightly worse breathing problems, but that could just be from the flu season...

I'm glad that you're feeling a bit better, Scrubbs! In which areas do you notice the most increase in strength?

Ttys!
Nicky

Side effects
 

My doc put me on prednisone Fall 2008. Although I am not a stranger to it, since I have asthma, it was definitely a pain to get used to.

First it was the rapid heart beats, then the night sweats, then the appetite urges, then here comes the weight.

I was sleeping erratically because every time I laid down I couldn't go to sleep because my heart beating would wake me up, and trust me when I say this was aggravating because I can sleep through a hurricane. Then once I finally went to sleep I was sweating so bad my sheets would stick to me. So I learned to take my pill when I woke up so by night the pounding would stop and to ALWAYS have a fan on.

The next thing I knew I had an appetite that would put a pregnant woman to shame. I would wake up in the middle of the night wanting a hot fudge sundae or a third helping of dinner. Before I knew it I was gaining 3 to 5 pounds a week. I went from 185 to 225 in about 4 months. I got to the point where I had to take hoodia to curb my appetite.

Even though it has been about 8 months since I have been off of Prednisone and I still have another 10lbs to lose.

As far as the medical benefit, i did not see any difference so I tapered myself off the drug which seemed very long and agonizing. NOTE: If you just stop taking it cold turkey, it is not only dangerous, but the withdrawal symptoms are VERY unbearable.

Hope this helps!

Stephanie