I started at 30 mg. The big issue I was concerned about was weight gain. I must tell you, the prednisone DOES alter your hunger drive and I felt emothional changes (including the dreaded "roid rage"). I've had my thymectomy and am feeling pretty strong, so I'm now down to 10 mg a day and hoping to wean off of that.

Be aware that you cannot stop prednisone cold, and must wean VERY slowly off of that med. 25mg sounds like a good starting point, but you may have to go higher at some time. Time will tell.

I've been away from this support group for a couple of months and will watch to see how you are feeling.

Good luck

Gary

Hi there Im so glad since your last post that you are feeling better!!! I know you were going thru alot! Hope the prednisone works for you with not many or no side affects...I started on a 25mg dose also along with the mestinon..Then had thymectomy and started weaning down..Like Gary said have to do very slowly..Had to stop mestinon cause really messed up my stomache and am still suffering now with issues there...But have weaned down the prednisone to 2.5mgs over the last 3 years or so...My side affects were alot like Garys only have no appetite and gained no weight but lost...Also still have the emotional issues for sure...bad anxiety and developed OCD etc...So those have not been fun but dunno if Ill ever be off it so trying to deal..I would definately take with food like you have been and I do mine at breakfast time...I have to say though at this point for me the bad outweighs the good, they have helped and as Ive said would rather be seeing better and breathing better etc than the latter...Hope it works well for you and you as I said may get no side affects, we are all different..Good luck and keep us posted..Jacki

I started at 20 mg and had to go up to 25 mg. As I recall it took a good 2-3 wks to feel full effects of prednisone. I did have weight gain, an increased appetite tho not ravenous. Also had some minor mood swings- i cried easier with sad movies/shows. The reason I had to get off prednisone was because it masked an intestinal infection which resulted in 2 surgeries and the loss of some large and small intestines.

I am not trying to scare you, most don't go through what I did and feeling better MG wise felt soooo great!!! It also helped with joint issues I have.

25mg might be all you need , or you may have to tweak it up (per doc) a little, then again you might get to tweak it down too!!

Stay away from those that are sick...don't shake hands...wipe down grocery shopping carts...wash hands often!!!! If have to be with someone who is ill, even a cold wear mask...can find at drug stores.

Best of luck to you!!!

Hi,
I have been on the whole range of low to high doses, and everyone is different, but I only had strong side effects on 30 per day or above. When you start it it might take a bit to adjust, but hopefully you'll do well on it. (Wait...is prednisolone not equal gram to gram to prednisone? Or do you in the UK call all the steroids prednisolone? Mine was prednisone if that matters.) When I started taking it, I started on a very low dose and gradually tapered up, but I did notice relief very quickly as the anti-inflammatory properties took effect. Then, I believe my doctor said it took about 8-12 weeks for it to take full effect on t-cell production, and I did notice an additional improvement around that time.

I'm so glad it's helping you to feel better! I remember you've been struggling for a while and not getting much help from your doctors. The only other thing I'd add is, since the steroids are a stimulant, I always take mine as soon as I get up, since they peak about 8 or 9 hours after I take the pill. If I forget to take the pill in the morning, sometimes I just wait until the next day because if I take it at 4 pm, I would be wired, my heart racing, when I was trying to go to bed! You don't say you're having trouble sleeping, but if you do start to, try taking the pill first thing in the morning (with food so you don't get heartburn!) and see if that helps.

And others have said you develop a kind of reliance on prednisone (is it after three weeks on a dose higher than 20 per day? I think), because it makes your adrenal glands will stop producing. so you can't abruptly stop it, you have to taper. so when your doctor says "a month trial," if for some reason at the end of the month he didn't want you to keep taking it, just make sure he doesn't really just stop you but weans you off of it (he is probably planning on that if he's not an idiot :)

i am not an expert on the dosage. I am o 30mg and have been up as high as 60. That having been said, i am glad that they are treating you finally... so glad!!! Took a few weeks for me to truly feel better on the perdnisone, but it did put a spring back in my step. best of luck.

So glad you found some help and are starting to feel better!

I'm currently on 60 mg of prednisone, since I came home from a week in the hospital with a myasthenia crisis. At this dosage, the side effects are pretty brutal (eating like a fiend, breaking out in full body sweats, puffy, bloated, not sleeping more than 5 hrs.) but I have also been at 20mg, and at thar dose, the side effects were pretty minimal for me.

I have fainted a few times since coming home, and the neuro tells me it's likely from dehydration since the prednisone has diuretic effects (hardly seems possible when I'm so puffy!) so don't forget to drink your water to counter that effect.

Hoping you continue to feel better each day.

Tamara

It may sound like a low dose to you but I think it is medium.
I wish I would have started at 25 when I was first diagnosed because I think it would have prevented me from having a crisis.
Sounds like a great dose to me.

My doctor had me start by going up to 30 mg and taper down to 25 mg over a few weeks. I got worse before better. It took me about 3 months.

30 mg of prednisone in my opinion is an average amount however being the snowflakes we all are and your current mg status it can go up or down . Gary is 100 percent correct in NEVER suddenly stop taking pred as your adrenal glands will never be able to restart production and that is disaster .

Something I mentioned in the past is when your taking drugs especially prednisone you should have a medical alert bracelet or some other form to identifying that your taking it God forbid something happens and you can alert the Docs / nurses etc that your taking meds. The Mose information the better.

There is some current apps where you can constantly upload and keep your current meds available for medical emergencies . It was a while back that Ray had mentioned this and can be found by googling electronic medical bracelets.

Cj

Thanks everyone for you advice and thoughts. I had a good week, still tired and needing regular rest but feeling less ill and heavy bodied. I am thankful of no noticeable side effects either....so far!!

I have been keeping an open mind as I know I can have the odd better week, but have been quietly hopeful.

However, (typically) this week if all weeks my relationship hit a bump in the road and I was worried this would make me run on adrenaline for a few days and then crash and possibly cloud the picture in the job the steroids is doing?? Last night I got quite upset and just went really weak, like everything drained out of my body and I knew I needed to get some sleep?! And today, I'm not as bad as I have been but the heavy body is back a little and it's definitely been a rest day!!

It's so hard to know with this as I know stress can make MG worse but also in such early days of steroids it's hard to gague how they are working....if the improvement was coincidence etc etc!

I have another week until I have to report back to the dr....I hope for a clearer picture of things by then!! It's never simple is it?!

Thanks again everyone....sorry to rant!!x

Hubby has had MG almost 4 years! For the third time he has had to be put on prednisone for double vision! We are now in NY and being seen by a neuromuscular doctor! She put him on 20 mg and it took 3 weeks for DV to go and now on taper down to 5mg and maybe stay on that dose to eliminate those symtoms for good, hopefully! This taper she is doing will be 14 weeks! Only side effect with Prednisone is an hour after taking It his lips get kinda numb but goes away in a couple hours! I hope you do well, my friend! Barb

Hello again, my friend. I guess because I've been away so long I can't be brief with anything... lol I hope that this response doesn't end up like my last one.

So when I was initially put on prednisone, it was only 5 mg. I was kind of upset with the minimal dosage but there was an awesome reason for my neuro doing it that way.

1st
Similar to tapering off of it, titrating up gives your body time to get use to the changes it will bring. (Sweating, mood changes, etc)

2nd
It gives you time to adjust to the feeling of the extra energy plus relieve any anxiety or fears you have in taking it.

3rd
You may be solid and rebound at a smaller dose so starting out even at a mid-level dose, you might be on more than you need to be. That could be the case by only 5 mg or much more than that.

Lastly, the side effects didn't all rush in at the same time. This was the key for me. Once I was on my normal dose (25 mg) it didn't seem as bad as if I'd started it all at once. I couldn't have possibly known what to expect from it and I probably wouldn't have stayed on it for very long.

Obviously, this is just my experience with the prednisone and I don't expect anyone else to respond the same as I.

I'm happy that you've seen improvement. I didn't have the experience of getting worse before better. Perhaps that is due to the titration process that I went through. I'm not sure really sure why that is.

Please just make sure that you don't over do it when the energy hits you. It can make you feel so good that you think that you can get everything done... it's lying to you. You can NOT get it all done and you shouldn't even try. Make manageable goals for getting tasks done. Until you are more stable you have to be very careful.

I forgot to say this in my response to your other post. Your doctor not wanting to give you prednisone based on the fact that your studies have been negative is bull. Having success with mestinon alone is a positive . Many neuro docs use that as the sole basis for treating MG and worry about the other studies later. When nothing shows up on the studies but a patient shows improvement on the mestinon, that's a positive. Something as simple as an ice test can be convincing enough to begin treatment, in some cases. It sounds like the UK operates differently than the US.

Okay, that's all I have to say. I'm thrilled that you are seeing improvement. Be patient and take it slow. Please keep us all posted, as you can. Big hugs!!!

Angie