i have to respond to the prednisone,,,,for so long i have tried to tough it out with out taking the pred., i would feel so bad at times, just so fatigued,,,i finally talked to my neuro. he put me on 20mgs a day until the cellcept kicks in and then we will taper off on the pred. ive been taking the 20mgs for the last 3 days,,,i feel like a new person,,,i actually have a lot of energy too......i wonder why i waited so long to start taking it, i could of had some great relief along time ago,,,i was reluctant to take the pred, because of the side affects, my local dr. really didnt want me on prednisone either,,,my quality of life was really suffering without the prednisone, i feel great, at least 3days in a row now,,,i will be very careful to watch myself on the pred. the side affects can be nasty,,,i do have a heart condition, and suffered a heart attack 4 years ago,and 4 stints, the males in my family have very bad genes,,,,i can look back growing up and my dad died of a heart attack and he took the nitro pills every day, thus my neuro. and local dr. caution me with the prednisone, but when the quality of life gets so bad, a person has to try something ya know..im also on mestinon,and i really dont have any worry with headaches with anything i take,but we are all different SO SORRY ABOUT THE BIOGRAPHY I WROTE, BUT IM SO HAPPY TO FEEL GOOD FOR A CHANGE,,,,,,,MAY GOD BLESS

TERRY.....I HOPE ALL WORKS OUT FOR YOU

How much prednisone? Some doctors taper it up very gradually and some just start you high. I went very gradually from 20mg to 60mg and didn't have any headaches at all. Mostly my sleep gets messed up at the higher doses, but it sure dose make a difference making my MG better.
Of course, prednisone does have lots of other side effects and is different for different folks. I would advise starting low if you haven't already -- maybe 10 mg -- what my doc first suggested before I pushed to try 20 mg trying to get a quicker effect. It did take me two months to get to 60 as I was monitoring my increasing blood sugars worried about being pushed from pre-diabetic to diabetic.
Good Luck

Thanks for the info. Taking about 20 mg. So do the side effects go away?

variable blood pressure, lower heart rate, higher blood sugar, problems sleeping, and sort of a wired feeling were all present at higher doses. I tracked the things, adjusted to a diabetic type diet and we were considering blood pressure medicine and sleeping pills when I was able to start tapering down--and the problems decreased.
The prednisone also seemed to make me hungry and I am battling to keep from putting on extra weight.
However, I much prefer the prednisone problems to the mestinon problems and to MG problems. With prednsione my double vision and worst weakness went away. I am still not normal, but certainly much better off than a few months ago (I found out I have MG in May, deteriorated rapidly for a month and then with Mestinon first and increasing prednisone am much better).
Good Luck. There does not seem to be a cure, just trying to find a balance of symptoms and meds.

I couldn't even take 20mg from the start, so I stayed on 10mg for 8 months and was weaning off due to side effects. My new neuro woulnd't let me go completely off so he change the way I took it. I am currently on 7.5mg every other day because it causes less side effects. Will continue to taper completely off since the Imuran has kicked in.

Everyone is different and many here have had no problems taking higher doses. Looking back now even though I had side effects, I can say even the low dose improved my eye sight and gave me more strength. Good Luck!

Debbie, like you I have recently fallen off my remission horse. booo! I was good for about 10 years - well much better, I would get tired, but I did everything I wanted and stopped taking meds in 2002 or so.

I started on 30mg of prednisone and 60mg of mestinon about 3 months ago now. Today, up to 60mg prednisone and 60mg mestinon 4x per day. The prednisone gave me a headache for about a week, but that was it. I really notice little to no relief without the mestinon in combination with the prednisone. Each time I increased the prednisone I noticed some symptom, headache, shortness of breath, etc., but each was short lived. Well, that is my story, everyone is different. Are you taking mestinon also?

Family doc didn't want to give me the mestinon till I saw the neuro. When I was first diagnosed at 14 mestinon was all i took. At 19 I was using about 10 to 15 tabs of 60 mg a day so that is when I had my thymectomy. After 10 years no meds. Now 20 years here I go again. Thank you for the help. All new meds out there. Back then my neuro said that you have to be the one to decide what you need & he would decide when it was to much.

I had a bad week last week & almost went to the ER. My Neuro increased the mestinon 30 mgs 4 x a day along with 1 Timespan in the AM. I also take 20mgs of Predisone going on 2 weeks. I am feeling so much better this weekend from last!! It is about finding the right balance of meds. I too like a lot of people was resisting taking Predisone. I was diagnosed in April & I was stubborn I didn't take it until now. I suffered for no reason. I haven't had any side effects that r really bothersome. I'm just glad I don't have dble vision, droopy-closing eyes & difficulty eating& swallowing & breathing.anymore!
Good luck!

Good for you, Sue!

So true how we just HAVE TO hesitate to consider these toxins, and later we look back and know we suffered due to being stubborn.

It is human nature. Someone says take a poison and make you feel better. We go "what??? NO WAY!!" LOL

I simply had to as my condition worsened. I suffered for a few months and didn't need to. Sometimes I wonder if I had started to push the disease back sooner if I would be in remission now. I can't dwell on it though.

Have a great day everyone!

Troy

The scariest part of MG is that the antibodies attacking our muscle receptors actually can lead to permanent damage. Meds that lower the immune system activity, like prednisone, can prevent the damage while keeping MG at bay. Mestinon doesn't stop the damage, just helps the symptoms.
So, when MG is severe, like mine is, I choose prednisone and its problems over losing muscle receptors. While muscle receptors seem to grow back again if the attack is stopped, there is a point where they may not according to the reading I have done.
So--as my mother who has been taking prednisone for 30 years (and turns 91 in December) says, "It beats the alternatives."

Russ, I agree with you about treatment. Given the context of my life and all its variables, I see no reason to use Mestinon as a "treatment", when is merely masks symptoms. Furthermore, my neuro stated that prolonged use of Mestinon could weaken one over time, so I am going to ask if he can provide me the source of that information. I have seen a few places where you have mentioned permanent damage resulting from not targeting the root cause of MG. Would you happen to have a link to something on that? If so, thanks. I like to get my hands on as much pertinent info as possible, but the Internet is a vast place, even with Google.

Unfortunately with prednisone any side effect you get is a "normal" side effect as it is completely promiscuous in its pharmacology. However, start up headache usually go in a couple of weeks or so. At 20mgs the main early side effect is bone loss and that can be stopped by calcium , vitamin d and alendronate. Ask you doctor if these are appropriate for you. They need to be considered from the start as bone loss begins immediately.

Pred at 40mgs every other day put me into remission so I am very in favour of it but that does not mean that its side effects should be ignored. be If you use it the other thing to do is to very strict about your salt intake (down to less than 1.5g daily) and to keep calorie intake below the level where you put on fat. A strict 40% protein, 40% carbohydrate and 20% fat diet (just like the muscle builders use) will avoid wieght gain and help avoid any problems with high blood pressure, sugar, cholesterol or muscle loss.

The sort of muscle loss that has been mentioned is partly becase prednisone reduces blood flow to the proximal limb muscles (there are relatively few muscle surface recepts that are particularly adversely effected by prednisolone) so that any excersize you can take (not easy with MG) will help. I lost some thigh muscle when on the high dose even though I excersized regularly but it was not much. It has come back since I can now excersixe properly without the MG.

Remember that half the people who use prednisolone end up without symptoms so keep motivated.