Hi Jessica, First things first I've been on Prednisone for almost 6 years, never been off, but have tried to taper. Many times I cried, cause I couldn't even stand to look at myself, as I feel like my cheeks could be mistaken for my other set The side effect may have cause me Pulmonary disease, Adrenal disease, and it has caused me to have type two diabetes. So boy can I understand you wanting to get off of it. As It has caused me a host of other problems, But, it has helped me breathe, walk, chew, and do some things I wasn't able to do before treatment. Of course I'm on other meds for MG as well. CycloSporine, Provigil,Prednisone, Mestinon, and I know I'm leaving one out, can't think.

Anyways, to your question, Be very very careful to wean with the help of your Doctor. I have found from talking with many many people who have come off of Prednisone is that it didn't seem to matter the amount, but how your Adrenal glands react to waking up again, if they wake up. It can be very life threatening if you go off on your own. So Please please please do so with your Neuros help.
I know of a person who had such a hard time getting off, and waking her adrenals that she had to use a razor to shave off a tiny bit off the pill once a month to get off of it, and even then she was having problems. It took her two years to come down from something around 7mg.
And truthfully, I've heard that in varying degrees from several different MG'ers.
So Please be careful.
Ask a lot of questions, read up on prednisone, adrenal crisis etc.
God Bless You I really understand, and wish I too could get off, but my body won't let me.
Much Love and Prayers
Lizzie

Lizzie,
I so appreciate you sharing your struggle with the pred. I am determined to get off this poison but after reading your post have decided to slow it down a bit. I am terrified of going into a crisis and coming off of it too soon just isn't worth the risk.

Nicky,
I have just recently started noticing the hair loss. I think you are right that it is connected to lowering the pred. Mine seems to be worse when I'm washing my hair. I am also noticing that it seems drier which is something I have never had before. I like you condition all the time. Does anyone else on here color their hair and if so have you noticed that your color seems to either grow out or fade at the roots quicker than before? I have colored once a mont hfor years but am noticing I really need to do it every 3 weeks to keep the roots from showing.

I had to laugh about the moonface everyone describes. I have noticed the last couple of weeks when I look in the mirror I look like I have chipmunk cheeks. Of course the weight gain is something I am really struggling with! I have gained 10 pounds and it seems like my jeans get tighter everyday. I bought a treadmill and have ordered a yoga DVD. My Dr told me it is hard to lose the weight while still on pred but to try and maintain where I'm at. I have gotten lazy about exercising and hope that will help.
Kendra

Kendra,

What you describe with the hair colour not sticking to the hairs is something I've read about on other boards discussing prednisone side-effects. I think that the hair just gets so dry from it, and thin, that it doesn't absorb colour well.

I definately am going to have to cut my hair. It's breaking and falling out in hugh knots like crazy!

Nicky

Nicky that is crazy!!! I thought for sure it was my imagination but I guess not. Just another good reason to hate the pred!

Oh I can't imagine how stressful it must be to watch your hair fall out in chunks! Maybe once you are down to alternate day only pred this will get better.
Kendra

Nicky, I have never taken Pred, so I can't speak to that. But, I have gone through the hair problem you are describing and I was devastated. It was a long time ago, but I had very long healty hair and in no time at all it became so dry it felt like hay and was falling out like crazy. I had to cut it very short and it was so thin from all the fall out, but seemed to stop as fast has it started. It did grow back in, but not quite as full as it was. The only thing my doctor could contribute it to was a sudden rise in my TSH levels. I'm sorry this is happening to you, but it did help getting it cut short so I didn't have to go through that horrible feeling everytime I saw the handfuls of long hair I was losing every day. I really feel for you, but try to take some comfort in knowing it will grow back...easier said then done, I know. Take care and keep us posted.

Big Hugs,
Pat

Thanks, Pat!

I was thinking that I should maybe get my TSH levels checked again.

When your hair was falling out like that, did your scalp really hurt too? I have had shedding episodes before over the years, but never to this degree. Everytime I've had them, my scalp really, really hurts. Like even moving a few hairs kills. It's like there are needles in my scalp. Last time this happened, I had to cut my hair really, really short too at that time, and it seemed to help a bit. But again, it has never been this bad. My brush practically needs its own hairdresser...lol

I think that you may be right about the TSH thing. Mine was a bit more than 2before starting the prednisone, then afterwards (when I started it), it got down to 0.75 (I read that steroids suppress our pituitary glands), and I have antibodies to my thyroid. I was thinking that maybe as we lower the prednisone dosage, our TSH starts to go up again, and maybe this makes the hair fall out.

I'm going to let my doctor know about this.

Thanks for your reply, Pat!

Nicky

Nicky, I don't remember if my scalp hurt that first time, but over the years I too have had that shedding many times and YES my scalp not only hurt, but just lightly pushing on my hair felt like needles...what do you think causes that?! I know as the hair starts to grow in you can feel the prickly stubble when you run you fingers lightly over the scalp, but this is different like you said and it hurts. I never mentioned that to my doctor or anyone for that matter untill now. Guess I thought I was the only one! So glad you mentioned it, thanks.

Hugs,
Pat