Prednisone taper
 

After being diagnosed with MG in Dec. 2008 my teatments starting early in2009 have been 2 monthly IVIG's per month, 2000 mg of cellcept x2. 60 mg of mestinon x5 and prednisone 120 mg every other day. I have said before I have expieriencied everything this desease has to offer.

Fast forward to Feb. 2010. Significant inprovement. That's when my neuro started reducing my pred intake. First 100 mg EOD, then 80, ect., and last month from 20 mg to 15 mg EOD.

When I went from 40 to 20 mg EOD, I started increased fatigue. Now it is much worse and I am unable to do a lot of the things I did earlier in this year. For example, I could go out in the evening maybe for dinner or for a get together or play some cards. Now getting out of my chair in the evenings is quite a chore. My days can be like this also.

I have read a lot of posts about tapering off of pred, but no mention if the tapering resulted in more fatigue. Wondering if anybody else has had this happen to them.

Could be the reduction of pred has nothing to do with the way I am feeling but the damage the pred is has done to my body. Osteoporosis and osteoarthritis.

Any thoughts.

Tony

Tony- I too have experienced everything this disease has to offer, haha, sounds like a good thing..but no as you know.

But, the first time i was tapering off prednisone, I went from 80 every day down to 20 a day for the remaining time. I havent been off prednisone fully, just lower dosage. Yet I know as you go down in mgs, your body gets weaker, just because your used to having it there. So you reason (most likely) why your still experiencing weakness would be because your dosage is too low.

I just got off of cellcept and now am starting imuran, 2nd week. Its okay, just very weak still and being in college and being weak is annoying as hell.

I can sometimes get to class, then have to come back and sleep for 2 hours to get up to do homework. No excersize, nothing.

Its hard for sure, but just make sure get to your level of comfort with prednisone, of course with talking to your doctor first.

Im having IVIG starting next week to get me strong enough to be able to do everything a college kid should. Cant wait.


Hope you feel better.

Tony, Do you mind defining "fatigue?" It's funny, I had a doctor play a semantics game with me the first time I thought I had MG. I said, "My muscles feel weak." He said, "You mean fatigued?" To me, fatigue had always meant tired and weak meant weak! But to doctors, fatigue is a word they use for weak muscles. And if they are being an @$$, then they use it for both things to tick you off.

So, is it a case of your muscles being weaker or are you "sleepy tired?"

If you are weaker, it could be MG. I think a trip to your neuro is a smart thing to do to make sure.

If you are sleepy, it could be that you're having signs of adrenal fatigue. Going off of Pred too quickly can cause that to happen. While on Pred, in case you don't know already, the adrenals go "to sleep." Pred is doing their job for them! It can be very hard to get off of Pred due to that.

Don't assume it's the Pred withdrawal. It's always good to get an opinion from your primary doc if it doesn't get better. An endocrinologist can work with your neuro on getting you off of Pred, if that's the goal. But don't expect a neuro to be an endo.

I hope you can figure out what's going on and feel better.

Annie

Hi Tony, its great you've posted this, I've been thinking about it for a while. I can't seem to get below 15mg, as when I do I get double vision, but as its been years(about 2)since I tried it, I can't remember if I had muscle fatigue or not.

Annie, wow, I thought it was just me that had the fatigue/tired problem with Drs. My Dr almost had me in tears once over this......... Now I always say "I'm muscle fatigued, NOT tired" anyway I'd better stop here, or I will get waaaay off topic.

I tapered from 60 daily to 10 EOD and it took about 6 months. When I first started tapering, I went down 10 per day each week until I got down to 20 where I got real shaky and weak. Talked to the neuro and he said I tapered to quickly so we went back up to 40 daily and tapered 10/day every other week. This time everhthing went fine until I an now down to 10 EOD where I will probably stay for a while.

You probably should talk to your neuro about your symptoms and maybe change your taper rate.

Good luck!

Whether it's fatigue or weak muscles It's a feeling that i do not want to use the energy it will take me to get out of chair. I know I can do it and know I can also do some minor chore but it is also going to be very difficult to do.

This will happen when I am sleepy tired and I will dose but also when I'm alert and I might sit for hours watching TV wide awake.

My reduction of pred has been at 2 month intervals. Last month from 20 to 15mg. but I took 20 mg yesterday and again this morning.

I got up this morning feeling pretty good. ( 5 A.M. ) So I went golfing and played 12 holes. Would have played more but It was getting warm and I knew I would pay. I took my wife to the DR. today, waited 3 hrs. and its now 5 P.M. and i'm feeling pretty good.

It is hard to believe that 5 extra mg's could make such a difference.

But I just had my IGIV infusions 6 and 7 days ago and maybe they are just starting to kick in but I am going to do 20mg's EOD. I'm going to call neuro and tell him but sure he will be ok with him until I see him next.

Extra pred or IGIV. Still a mystery. I'll keep experiencing with the pred.

Hi Scrubbs,
If you are looking for some sensible pred taper schemes, you may consult
http://neuromuscular.wustl.edu/mtime/mgrx.html
(It's the last reference in the "Useful sites for MG" on top of the page)
As far as I am concerned, I never taper more than 10 % for each step.
Before doing that, I noticed that for about a week, I felt rather dizzy (weak?) and I assumed that the step was too big (i.e. going from 25 to 20, which is 25 %...). With a 10% step, the transition has ever been smooth without any odd sensation.
My step length is 3 to 4 weeks.
Maurice.

very different
 

Hi Neutro,
My neuro took me down by mgs, not percentage. Very different.

My step length has been 20 mg bi-monthly. 120 mg EOD 100, 80,60, 40, 20.
But last visit he he took me down to 15 mg EOD.

That is when I started expieriencing excessive fatigue. I took 20 mgs 2 days in a row and started feeling better. A return call from my neuro informed me that 5mg. could make a dirrerence and to stay on 20 mg EOD til my next visit.

I do not know if I would have felt better if I stayed on 15mg.

My improvement has been slow and I never expierienced anything remarkable
like I have read on this site. Like a dramatic improvment after a infusion or after taking a single 60 mg tablet of mestinon. So this was wierd.

Annie,
In retrospect;
I can be fatigued and not sleepy tired.
I can be fatigued and sleepy tired.
I can be sleepy tired and not fatigued.
There is no doubt in my mind that it's MG and I now realize that every time I have mentioned fatiuge to my neuro he knew exactly what I was talking about.
It's just plain muscle fatiuge from the disease.
No doubt.

Thanks guys;
Tony

I'm interested in this discussion about the difference between "fatigued," "weak," and "tired." My arm muscles get tired, by which I mean they feel like they would feel if I was just lifting weights or shoveling snow or something. They have an actual sensation in them of fatigue, that I can feel even if I'm resting them.

But my side and back muscles get weak. If I'm lying down, they don't feel unusual. I can't tell until I stand up if they're working or not. And when they're not working, they don't feel tired--they just don't hold me up like they're supposed to. If I move my upper body sligtly to the side, as you do when you take a step forward, I tend to just keep going, because my side and back muscles fail to tighten up. So I have to take a step to the side to catch myself, or when I'm seriously weak, I crash into the wall.

For this reason it took months before I understood that I didn't have an inner ear problem that was messing with my balance, or some sort of ataxia. I didn't feel any _sensation_ of weakness, like I do in my arms and neck. As for my legs, sometimes they feel fatigued like my arms, and sometimes they are just weak. When they're weak, I tend to do a slow-motion collapse. They just stop holding me up and I end up on the floor, but I don't hurt myself because they let me down verrrrrry slowly. I think I must be lovely to watch.

Does that make sense to anyone? I am still trying to figure all of this out. It would be encouraging to hear that anyone knows what I'm talking about!

Abby

i know EXACTLY what you mean Abby. i am having the beginnings of a crisis right now. the doc reduced my IVIG from 5 to 3 days because i have been doing so well but he also has been reducing my prednisone in preparation for my thymectomy and i am currently going by 5's and am at 10. i started with hand weakness and leg weakness and shortness of breath. he had to get me into ivig urgently--in under 24 hours. today will be day 3 and i am starting to do a bit better already thank goodness.

the situation started with my legs feeling wobbly and like i might fall when i went down the stairs. when my husband checked them with a straight leg raise from the couch, there was zero resistance. they felt like they had 40 lb weights attached and they were just totally gone. in the past, when i have problems walking, my knees just give out and i start to fall, no warning and no sense there is any weakness or fatigue at all.

my neuro was stunned by my weakness. he checked all the muscles in my fingers with his 3 residents there watching how to do all this and i just had no strength. again, no sense that there was a problem. the only way i knew was that i couldn't open a bottle with a pull tab that day but i had the day before.

in regards to the prednisone, my doc wanted me off for surgery but my MG turned on a dime so now he thinks i need to get in ASAP as soon as i'm strong enough. the surgeon said she'd operate on 10 or less and he is bumping up my ivig to hopefully cover me. i finish ivig on the 5th and start again on the 12th for 5 more days!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


debra

Fatigue
 

Abby;
It has been more than 8 months since I have fallen down or crashed off of walls. My muscles are stronger now but I am still conscious when I walk most of the time. Once in awhile, I realize I have been walking and I was not even thinking adout it.

To me, being fatigued, is when all the musles in my boby are sore. This causes me to be weaker than normal. It takes an unusual effort just to get up and get the remote control that's just 4 feet away from me.

I still do not know if anybody else with MG feels like this sometimes.

Tony

Abby, I know what you mean. I get all three of these feelings

TIRED (lacking energy)
"Tired" has not been on my list of symptoms since I started taking the Methyl B12 tablets that dissolve on your tongue, I recommend them highly (and I can't stop thanking AnnieB every time I say this...thanks AnnieB!!!!!). With MG until recently, I generally went to bed early (6 pm), slept in late and took afternoon naps quite often.

FATIGUED (weak due to overexertion)
If I do one activity for too long, the muscles I use get fatiqued and stop working. Stress does this as well and I get general fatigue within minutes of getting stressed. I have had this same "slow motion collapse" as you describe as a reaction to stress. I am told that it looks like I am doing it on purpose, that it doesn't look like I am falling at all. From my point of view, my muscles slowly give out and I am doing all I can do guide my fall so I don't get hurt. If I am lucky I feel it coming on and I can make it to the couch or my bed before collapsing. I hate stress and I hate it when I collapse on the floor.

WEAK (lacking physical strength)
Weakness for me is usually cured by Mestinon. After I overexert myself in a way that causes fatigue, I have general weakness for 3 days to 4 weeks and Mestinon won't help it (although I am sure Mestinon keeps my symptoms from getting worse). I've tried taking more Mestinon when I feel like this but then I get overdose symptoms. I have learned that I can't overexert myself unless I am prepared for up to a month of doing nothing except basic taking care of myself(showering, eating, brushing teeth, etc). I am like you in that I can't tell I am weak until I try to do something.

If I don't overexert myself I do have full strength for a short time and don't feel weak. Every day I play the game of judging just how far I can push myself without getting fatigued.

I wish you the best.

Thank you so much, Tony and DesertFlower! It helps me so much to see that what I'm experiencing isn't just me. These days I'm convinced I have MG and that I'll get diagnosed eventually.

DesertFlower, I especially appreciated your description of the slow-mo collapse, and how it looks from the outside like you're doing it on purpose. That is exactly how mine feels. That was, by the way, the first symptom of MG I ever had, and I couldn't understand what had happened, because I wasn't dizzy or light-headed, and I didn't have a feeling of muscle fatigue. I just went down.

My experience with Mestinon is like yours too. Twice now I've decided it doesn't do anything for me, because it can't handle overexertion or random bad spells. So twice I took myself off it. And twice I slowly declined over a period of a few weeks, and immediately improved dramatically when I started taking it again.

What Mestinon can't do (for me, at least) is fix me when I'm in the middle of a bad spell. What it can do is keep me from getting that bad, if I'm also careful. (It also can't cure stupidity, but I don't hold that against it!)

I always have a bad day on Sunday. I wondered what the psychological reasons for that are--do I hate church subconsciously or something? But it hit me, today (duh) that Sundays are always bad because in my schedule, Fridays and Saturdays are especially busy days for me.

Thanks again. This is so very encouraging for me! It's not that I want to have MG--I know everyone understands this--it's that I want to have a diagnosis.

Abby