[sugrkiss]

So I decided I just cannot stay on Pred any longer. I can't handle the side effects anymore. I was handling my MG without, it just seemed to help a lot. Anybody have any tips for coming off, or things I should watch out for? I'm only on 20 mg, so I don't think it will be too bad...and I am going to go slowly. Probably 5 mg a week, or so.

Also, anybody had cosmetic surgery since dignosed? I'm severly depressed about my body, and after 3 kids and Pred. I don't have any other options. Any input would be nice.

Thank you,
Jessica

[Nicknerd]

You have my empathy, Sugarkiss...I can't stand the prednisone anymore either...I'm tapering off of mine as well, so that I'm at alternate-day therapy
(50/0)..I'm seeing a new neurologist this coming month, and am hoping to taper down from the prednisone-day too...I can't stand how it's affected my appearance, not to mention all of the other sides which are much more serious that I'm dealing with....Found out today that I have ringworm! lol...That's not very serious, but come on-ringworm-on my face, no less?! I feel like I'm plowing my soil for strange creatures to flourish...

Anyway, unfortunately, the prednisone was helping me much more than I was aware...My sx have been flaring on the lower-prednisone days (10mgs)...My sx have always flared throughout my therapy, but they are much more severe now when they happen...*sighs*...I'm pretty sure that after I see this next neurologist, I will be on another immunosuppresant, and after revisiting the severe MG again, I think that's okay by me...Even if it means getting ringworm every now and then...

What are you considering cosmetic surgery for? The moonface and back hump are probably the worst for me....I can see that the moonface will go away as people are commenting that my face doesn't look as swollen, despite still being at a pretty high dose- but the hump's still hanging around-I really hope that I can get rid of it!

I think that you'll be okay, no need for surgery ( not sure if you were kidding around about that)...The only side that I've heard doesn't go away are severe stretch marks and osteoporosis, and sorry, the eye issues (glaucoma, cataracts) too...But the other cosmetic sides go away especially quickly the less time you've been on it, and the lower the dose you're at....I think you'll be just fine in a few months, so not to worry, girl!


Nicky

[dog lover]

Jessica,
I sooo understand wanting to come off the Pred!!! I am doing the very same thing and have talked with Nicky about it too since she is also tapering off. It is so frustrating because when I started the Pred I felt like I had my life back but then the side effects started and I like you just can't handle them anymore.

I think being sure you taper slowly like you mentioned is the most important. I am down to 40 mg alternate days from 60. I go down 10 mg every 2 weeks. I have noticed that I am having some soreness that I am pretty sure is related to coming off the Pred. so you might watch for that.

As for cosmetic surgery I haven't had any. I can tell you that right before my MG diagnosis I was considering Botox and Thank God I didn't do it because now I know how risky that could have been. I have a friend who has MS which is very similar to MG and she had a tummy tuck and breast implants since her DX and recovered fine outside of it taking longer for her to heal. I was very concerned about her doing this since there are serious risks involved in cosmetic surgery even in perfectly health people. Just make sure you talk with all of your Drs and make sure it is safe for you to undergo the procedure. I think breathing issues would be the biggest concern and most likely your weaknes will get worse from the stress it will put your body under. Sorry to be a downer but please be careful. You have little children who need their mommy and it isn't worth taking a life threatening risk for cosmetic surgery unless you can be certain it won't cause more problems.
Kendra

[Joanmarie63]

I am not taking pred any longer. I went off it 17 years ago and to be honest it took me a year to wean off it. I was take 60 mg and weaned off very slowly and under a Dr's care, make sure you do this under Dr's care!

As for plastic surgery, I have not had any done but I have had back and shoulder surgery a few years back and it had no effect on my MG {but I was in remission at that time} There are always risks with surgery so just make sure it is something you really want before doing it.

When you come off the pred I am sure you will start feeling better about yourself and the surgery may no longer be needed or wanted.

Keep us updated on how you are doing

[Nicknerd]

Hey,

Are either of you girls losing hair like crazy, or did you lose hair Joanmarie (when you were on steroids)? My hair is falling out so much, that even my family is shocked...Today I tried to run my fingers through my hair, and a huge clump came out in front of my mom and bf...My hair's really dry, so I'm hoping that's causing it and not premature balding or something...It seems to be coming out everywhere, but especially around the top...There aren't any bald spots yet, but this is all making me want to cut my hair really short (boy short)- which is not a good look for me especially with the addition of moonface....

[justdeb]

Not ether of the gals who responded, but...............I have had issues with hair loss to the point of bald spots literally. So I have gone to wigs on an off. Currently back in one since the hair started falling out in clumps again. Not sure if is the pred or something else. Don't care either, anymore. LOL
Just be careful on the pred wean. Listen closely to the old body and what it is sayng as you wean. My body is addicted to the pred. can't get to below 50 without crashing and burning. Vanity is horrid here. I refuse to even look in a mirror the transformation or should I say morphing iis sickening. I would love to see my OWN face and body again one day. sighdeb

[Nicknerd]

Thanks, Justdeb...Yeah, I've noticed that the very dry hair and falling-out-episodes started when I first weaned down from 80mgs...I think that it may be from weaning off the prednisone, as opposed to the prednisone itself...Maybe I am weaning too quickly...On my 'no-prednisone-day,' I was supposed to wean by 10mgs every month, but have been doing it every two weeks (to my own detriment, I guess)...March 1st, I wont be weaning that quickly anymore- I think that it is just too stressful for the old body....

I was watching Dr. Oz yesterday, and he was saying that when there's hairloss all over the head, it's usually from trauma that happened many months prior... I was thinking that maybe this is related too because I was really anemic some months back, and also from the surgery maybe...

Who knows...You know those little conditioners you get with hairdye? My hair's so dry, that I used a whole tube of that after I took a shower, didn't wash it out, and it's still dry! lol...Feels like I have cotton candy growing outta my head...

Maybe I will have to go ahead and cut it really short...but it ain't gonna be pretty....I guess I don't call 'em my 'ugly' pills for nothin'!

When you say that you 'crash,' you mean that your MG flares, right? Or do you mean that you get lots of withdrawal sx? The joint pain in my hands is returning, but it's not too bad at the moment, I can manage it...I also see it as a sign that my wounds will start healing again, and maybe my sternum will heal more properly- it moves around all the time...*sighs*

[neutro]

Hi Jessica,
Be careful with the tapering period, I had a very bad experience end of August when I went down from 5 mg/d to 4... When tapering, 10 or 5mg/d depending on the prior level, I usually had several bad days then my body seemed to adjust itself to the new dosage but this time it lasted several weeks and finally, I was sent back to a full relapse...which, now after 5 months I'm still trying to cope with, although I had to go back up to 60 mg/d!
My personal conclusions: never take off more than 10 % at a time and for the first four days, use (100%)-95%-100-95-100-95, then 90 for at least 3 weeks
Maurice.

[Maxwell'sMom]

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

[dog lover]

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