[Stellatum]

So I called my neuro to tell him I'm suddenly having much more trouble walking. My legs aren't that weak--I think it's my hip muscles. I tilt back and forth from the waist up.

The plan had been for me to get a second opinion from an MG specialist, since I'm seronegative and my SFEMG came back "borderline," before starting me on any immunosuppressants. But my appointment with the new specialist isn't until May 19.

My current neuro said he'd call the MG specialist and try to get me in sooner, but if he can't, we should start Prednisone right away.

I'm inclined to decline. I am not having trouble breathing, swallowing, chewing, or seeing. I would rather deal with my walking problems--I have ordered a four-wheeled walker with a seat--for a month if I have to, and then start Imuran or CellCept. I know these work more slowly, but I am afraid of Prednisone and its side-effects.

I'd welcome people's comments and opinions. Thanks, as always, for your kind support, and I wish you all a day of lifted spirits.

Abby

[Nicknerd]

Abby,

I don't blame you for wanting to decline...I found that prednisone increased my muscle weakness at times, and it can cause atrophic changes in the muscles...There was a patient here who mentioned that their hip muscles and shoulder muscles were a bit atrophied because of prednisone (this is what their doctor said). Mind you, that person had been on it for at least a year at a relatively high dosage, I believe...

If you feel okay coping with the weakness by using assistive devices, while waiting for another type of immunosuppresant to kick in, I think that's a good way to go! I've learned to always trust your own instincts in these matters, especially when you've been able to find your own ways of coping with the weakness, like a handy finger to move food around when you can't move your tongue!


Nicky

[Kathie Glenn]

I agree with Nicky. I was on 60 mg of Prednisone for 4 months then they tappered me down to 15 mg. My double vision came back like new so they increased it to 20mg. where I am now. I never had trouble with my legs at all (except with fibromyalgia) and now complain of my legs feeling like elephant legs and sort of atropied. The side effects I have had from Prednisone have been: lack of sleep, weight and fluid gain, bruising across my back and rashes, wheezing and labored breathing - just pant talking on the phone. I lost about 1/3 of my hair while on high doses. It now has come back and has come back curly. Never had curls! Strange! I have had skin problems where I never had them before - my face has broken out, I have dry rough places on my chest, arms and back - never had before! I got thrush while on high doses. I can't even begin to remember allt he side effects. AND - the double vision came back! I am now on 20 mg daily of Pred and 2000 daily of CellCept. I put myself back on Mestinon two weeks ago just to see what would happen with my left eye twitching allthe time (did no good to start with last year). Believe it or not, it has helped. It has been inconsistent, but has helped. I have found that working under certain lighting at the office and being on the computer more makes my eye twitch more. It is very discouraging. If I knew now then what I know now, I would never have started on Pred. I go back to MUSC this Thursday for another SFEMG to check the status of the MG and also in the arm and neck to see if it has started spreading to the body because of the breathing and the way my legs feel. Enough about me. I agree with Nick - I would be very leary about starting on Perd. Good luck. Kathie Glenn

[Nicknerd]

Kathie,

Yes, same here! I always used to say/believe that the only thing not affected by the MG was the old legs....As soon as I started prednisone (60mgs), it felt like my legs weighed a ton...Not only that, but my tongue was like a floppy dead fish in my mouth-colouress, and unbelievably weak...

Eventually, the pred. helped mestinon work more effectively for me (for tongue and such), but there are weak areas (like hips) that haven't quite recovered as I'm weaning down (now @ 20 mgs EOD)...I'm doing a lot of aerobic and weight lifting, but I can tell that it'll take time to get back to normal...Also, I have cellulite everywhere- like in my calves! lol...What gives? And I have extremely bad posture you like you can't even imagine...

I also think that prednisone contributes to these problems because, well for me, I couldn't function...My cognitive abilities, the dizziness, the heart palps., the raging lunatic feelings, excessive tiredness- just makes you feel like not doing anything, especially when I was at 80mgs....@ 80mgs, I couldn't even drive...I felt like I almost didn't know how, and I'd get these spells where it felt like I was having a heart attack- I'd start sweating profusely, and would would feel confused, disoriented...I think that was due to blood sugar because I'd be starving, and end up devouring a bagel (or anything I could get my hands on)...

All in all, at lower doses (like around 20mgs) it's bad....But at higher, it can be really bad and it just wasn't worth it to me at all...

Kathy...I can relate to absolutely everything you've said...The hairloss, the skin problems...I got ring worm on my chest! I also have a fatty torso that's very difficult to exercise away...At least if the fat were distributed evenly, it would be alright...But it's like little blobs of fat...I didn't have thrush, but i got cavities...I also have had the wheezing and such...oh, and acid reflux like no one's business...

The list just goes on and on...It's not a medicine where 10% of people might experience the following...It's a medicine where you have Cushing's disease, and get the full array of problems...

One more thing...I had a sternotomy for thymoma back in AUgust, and saw my surgeon last week for a follow-up...He says taht he believes that due to the high dose of prednisone I was on, it'll take a year, as opposed to the normal 6-weeks for my sternum to heal...I told him that I had been doing push ups and I can hear/feel my sternum sorta cracking...He doesn't think it's healed...Scary, or what? I feel mad about this, especially since I begged to not take this medicine...But that's how things have gone, and I gotta live with it!

[AnnieB3]

Abby, This is only my opinion and you need to do what's right for you but I have to say this.

I think you need to back the cart and the horse way back. First, you are not definitively certain you have MG, right? Everything points in that direction but what if you don't have it? If you are on Pred, and Mestinon, when you redo the SFEMG, there is NO WAY you will know for sure. Pred will make any signs of MG disappear. Talk to anyone who has had a test on it and then off of it.

Yes, you are having significant difficulty with balance. Has anyone looked at your hips or lower back to make certain it is muscular and not some other cause? What if you have something else adding to that issue?

Prednisone is a HUGE decision. You need to write down all of the possible implications and/or side effects of it. That alone should take a month.

Can you adapt your life for a month, find out exactly ALL of what is going on and then make your decision? There's often no going back with Pred. Getting off of Pred is not easy and there are people I know who can't get off of it due to what it's done to their adrenal glands.

If you're not near a crisis and overall doing okay, wouldn't it be better to wait for now at least? Again, this is only my opinion. I know Pred is very helpful for a lot of autoimmune diseases but please consider being cautious.

I hope you can have answers about your health you can feel good about.

Annie

[Kathie Glenn]

Originally Posted by Nicknerd

Kathie,

Yes, same here! I always used to say/believe that the only thing not affected by the MG was the old legs....As soon as I started prednisone (60mgs), it felt like my legs weighed a ton...Not only that, but my tongue was like a floppy dead fish in my mouth-colouress, and unbelievably weak...

Eventually, the pred. helped mestinon work more effectively for me (for tongue and such), but there are weak areas (like hips) that haven't quite recovered as I'm weaning down (now @ 20 mgs EOD)...I'm doing a lot of aerobic and weight lifting, but I can tell that it'll take time to get back to normal...Also, I have cellulite everywhere- like in my calves! lol...What gives? And I have extremely bad posture you like you can't even imagine...

I also think that prednisone contributes to these problems because, well for me, I couldn't function...My cognitive abilities, the dizziness, the heart palps., the raging lunatic feelings, excessive tiredness- just makes you feel like not doing anything, especially when I was at 80mgs....@ 80mgs, I couldn't even drive...I felt like I almost didn't know how, and I'd get these spells where it felt like I was having a heart attack- I'd start sweating profusely, and would would feel confused, disoriented...I think that was due to blood sugar because I'd be starving, and end up devouring a bagel (or anything I could get my hands on)...

All in all, at lower doses (like around 20mgs) it's bad....But at higher, it can be really bad and it just wasn't worth it to me at all...

Kathy...I can relate to absolutely everything you've said...The hairloss, the skin problems...I got ring worm on my chest! I also have a fatty torso that's very difficult to exercise away...At least if the fat were distributed evenly, it would be alright...But it's like little blobs of fat...I didn't have thrush, but i got cavities...I also have had the wheezing and such...oh, and acid reflux like no one's business...

The list just goes on and on...It's not a medicine where 10% of people might experience the following...It's a medicine where you have Cushing's disease, and get the full array of problems...

One more thing...I had a sternotomy for thymoma back in AUgust, and saw my surgeon last week for a follow-up...He says taht he believes that due to the high dose of prednisone I was on, it'll take a year, as opposed to the normal 6-weeks for my sternum to heal...I told him that I had been doing push ups and I can hear/feel my sternum sorta cracking...He doesn't think it's healed...Scary, or what? I feel mad about this, especially since I begged to not take this medicine...But that's how things have gone, and I gotta live with it!

Nickerd....LOL....I couldn't help but laugh reading your response. You named some side effects I had forgotten about. Oh gosh! I have "the hump" on the back, but they said not Cushing's. I could hardly get out of bed and walk on the 60 mg. and when I tried to go to the store, I turned around and went back home. It was weeks that my husband had to do that chore! I was told that women my age wouldn't have a thynoma. I am 60 and was 59 when diagnosed. Can they tell by doing a chest x-ray whether you have one or not? Right where the thynoma would be I have a swollen like lump. The dr. doesn't comment one way or another. So..... I know what you feel about eating. It is like you are two different people and one of you knows you shouldn't and the other person says EAT! Depression has been awful on this stuff. I still work, but have to catch myself from being too hasty in saying something that I would want to take back. I have night sweats something awful. I wake us during the night and every morning with a wet head and nightgown. I want to exercise, but am just too tired when I get home to do so. I just want to sit. When I stand up my legs feel like they don't want to move or carry me. You take care of yourself and don't overwork your sternum! KG

[KathyV]

Originally Posted by Kathie Glenn

I was told that women my age wouldn't have a thynoma. I am 60 and was 59 when diagnosed. Can they tell by doing a chest x-ray whether you have one or not? Right where the thynoma would be I have a swollen like lump. The dr. doesn't comment one way or another.

Hogwash! I'm a 57 year old female who was diagnosed with MG last year. A chest CT scan showed that I had a thymoma. I had my thymectomy done this past December. Mine was done robotically so I have just 3 small one inch scars at the side of my right breast.

[dog lover]

Abby,
Sorry I replied to Kathie but meant you....this is the memory loss I was talking about.

[Stellatum]

Thanks Kendra, and everyone else. My doctor did call the mg specialist, and he got my appointment moved up. A week. I still have almost three weeks to wait. But I'm definitely going to wait it out, because my symptoms are getting clearer and clearer. By the time I get to the new doctor, I bet he gets some ideas just by watching me lurch into his office! My muscle weakeness seems to be settling into my hips and shoulders. From what I've read, this suggests either LEMS or limb-girdle muscular dystrophy. I'm pretty convinced that the Mestinon helps, so my money's on LEMS. Today, anyhoo.