Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Background: I am about 8 months newly diagnosed with ocular MG. My symptoms were managed until a month ago, when I had a relentless week of constant double vision. Felt like I was walking around cross eyed. My daily dose of Mestinon was doubled to 120mg 3xs a day. It only lightly suppressed the issue. And so I began my first ever course of prednisone. I am barely 2 weeks in, on 20mg a day for the foreseeable next 30 days.
Like most people, I have a very bare understanding of Prednisone. In my minimal research, I did learn that Prednisone can help the possibility of it generalizing. That benefit alone should be enough.
But in my minimal research I came across far more about the contraindications that makes me nervous about being on this drug (typical internet). Bad for your bones (I take 5,000 ius of D), can make you bloated, maybe nutty or jittery, hard to get off them, cushings, psychosis, moon faced, the list goes on. And I have a (perhaps) baseless fear that I am going to be on a revolving door of, off and on again prednisone treatments for life because they are difficult to get off.
I have to do whatever it takes to maintain a quality of life with this disease. I just hope through shared wisdom I can get a better understanding of this drug and in turn feel better about taking them.
My Questions:
-I was hoping some of you could share your experiences with prednisone. I know there are other medical options, but I want to hear about this drug specifically.
-How long did your courses run and what was the dose? What was the outcome?
-Did your doctor provide an exit strategy? I understand that symptoms may reappear in full force even when tapering off. So my confusion is, I can't imagine you should or can be on corticosteroids for life. How did you and your doctor know when to take you off?
-Do you get off a course and it's like two steps back one step foward? Bad for a time till your body re-adjust to own natural productions?
-It is my meager understanding that Prednisone at best should "calm"/reset our out of whack immune systems? I am hoping that someone could help me understand how it addresses an incurable disease. (Please explain it like I'm in 6th grade)
-I do run 3-4 miles 2xs a week, and unenthusiastically work out 4xs a week at the moment. My diet is maybe a 7 in terms of healthy, 10 being like an organic only macrobiotic dedication. Never gonna happen. But is there anything you've done to help mitigate the bloat that I still seem to be experiencing? Or anything you've done to counter any of the typical side effects that you could share?
-Is there anything you wished you knew about before you started taking them?
Feel free to answer any, all or none of my many questions. I greatly appreciate any experiences people are willing to share! Thank you!
welcome to the group, i am a mg generalied patient for the last 11yrs, i am 83yrs old, my treatment is 3mgs. daily of pirystigamine(generic for mestidone)
and 5 mgs. of predinisone every other day for the last 1 yrs,
when i got inoto a relapse i have gone higher on the doses but allways came down, that as allow me to manage my intake of meds, adjusting how i see fit for my management of my mg.
predisone is the least of the troublesome inmumno suppressants. our body produces 5 to 7 mgs daily, as i am in low dose, i every so often i go off prednisone with out any problems as i come back 2 to 7 days later.
as all drugs prednisone gas its own, but this is when taken in high quantities for longer period
1 change of moos
2 high blood pressure
3 gain waitt
and others, but no problems if you can keep it at the low doses.
even do i am old, i am a person to keep mouving constantly, walk untill reasently 3miles in the morning and 2 in the late afternon, eat a consentious diet, free of the gmo.s no red meat whit hormones, lots of fish, fruits low on soda but drink electrolates. swim as i see fit in response to my body.
and the most important i do not allow my stress to take over as it is the ultimate damage that you can do to yourslef.
in oyher words. control your stress, control your activities, that you see you become tired, take a breack
i have posted for manny years how to control and mange yourselfs with mg
i would sugest that you take aa peack
best of luck to you, nd also i have got my 2 shots and at this time i am getting back to my rutine
Andre
I appreciate your insight. It seems like prednisone hasn't set you back in life, or caused you too many complications, which I am happy to hear!
And I will be sure to check back! Glad you're getting your shots!
I've been diagnosed for only 18 months or so...........64 y/o male
Prednisdone 20mg/day - about 6 months, then decreased to 15mg/day for a few months and have just reduced again to 10mg/day. The target that I have acquired is 10mg every other day. For maintenance.
I have heard all of those things about Prednisdone as well. For me, I only experienced hunger so I gained some weight that I now must loose.
I think that those kinds of reactactions mostly apply to larger (40mg/day or more) for long periods of time. I might be wrong.
Early on, I believe that my bouts with double vision were resolved, probably, by the Prednisdone.
My Doctor has not provided me with and exit strategy as of yet. I am not sure that there is one. We either have MG or we don't. I have been Stable for the last 6 months, but that does not mean that I am symptom free. When I get too stressed or overtired the MG digs in and causes extreme fatigue and sometimes I become a bit disoriented. If I continue to press I get worse. I would think that if I continued to press a Crisis might be near.
I congratulate you an your level of activity. Before MG hit, my wife and I were biking 14 to 20 miles 3 to 4 times a week. Today, I don't think I could walk a mile. Well that's not true, but I will take a couple of rest breaks
I have not gotten Off Course yet. My Neuro keeps telling me to be patient... He says I am getting better. My wife agrees. That said, I am better today than I was last year at this time.
Certainly there are degrees to this disease. I understand that it's different for everyone.
I do not wish to mis-speak but, Andre, who posted above, has a pretty good plan. He and others here have found ways to deal with this thing. I am a newbie to this forum and MG, at large, and am still trying to learn.
I presume that others will be posting and trying to answer your questions.
- Got my first shot, will get the second next week-
Good Luck,
Scott
I had much the same experience as you did, first on only Mestinon (6-8 per day as needed) and then prednisone added.
Prednisone at 60 mg per day completely brought my MG under control. I started at 20mg per day with some improvement in a few weeks, but as I wanted to function better immediately (my wife was undergoing stage 4 cancer treatment and I was her chauffeur and care giver and I needed to function) my doctor and I agreed to push the prednisone higher. We wanted short term improvement regardless of the side effects.
My most pressing side effect at the higher doses was high levels of blood sugar and being pushed towards diabetes. My neuro really didn't want this, and so I made a deal with her to test my blood sugar daily (walmart home testing kit) and to go on a diabetes low sugar low starch diet to keep the blood sugar under 125 fasting.
In about 5 months I was completely free of MG symptoms and function good, and began the taper of prednisone to the lowest effective dose. That was slow, but greatly improved the side effects.
My advice is that prednisone is good for the initial treatment as for many of us it can work very well. And then once the symptoms make live again liveable, start the taper and switch to something more tolerable long term. Many folks use Cellcept long term OK, and Imuran is another.
My mother had an autoimmune disease, polymyalgia rheumatica, that made life intolerable for the joint pains. She got it in her 60s and for 25 years was on prednisone at a low level (about 10-15 mg per day). It made her life livable, did push her into type 2 diabetes, cataracts and other issues, but did live to age 92, independently and with functionality. Without it life would have been intolerable.
I was only on prednisone for a year, and it did push along my cataracts and added 20 lbs, but it too let me take care of my wife (who is fine 7 years later) and got me through the worst part of mg.
I was lucky in being one of the 15% who go into remission and so didn't have to face the effects of longterm medication. But if MG returns, I plan to hit it hard immediately with prednisone as well as starting cellcept for the long term.
Good Luck
Russ
I was in your position when I was first diagnosed and had vision issues and droopy eye lid. My doc recommended prednisone and I made the decision to not go on prednisone and just do mestinon because prednisone had side effect.
That was my first and biggest mistake. I headed down hill and fast. Within 6 months I was in intensive care and on a ventilator. Then I was forced to take 60 of prednisone just to survive.
I wish I would have taken it in the beginning to prevent a full blown crisis.
I did end up leaving my job but my life as been pretty normal since that 10 years ago. I have been up and down over the years on prednisone and currently my best level is 7 of prednisone. I am also on cellcept.
If you were able to rid of vision issues with prednisone and lead a "good life"
I would consider you very fortunate.
Every time I try to go below 7 I have issues that drive me back up. I am completely content on prednisone for my life.
I would love to share more but cant tonight. The only thing I wish was that I would have had this group the day I was diagnosed. It helped me when I was recovering from my hospitalization. I sometimes wonder if this group wouldn't have helped me stay out of hospital
as you know we are all in this togheter since i am at the bottom of the scale on prednisone 5mgs. every other day,
why dont you try the following dose, if that doesnt work for you , you can allways go back to 7mgs. daily.
as prednisone stays in your body for a period of 48hrs, then dissipate try 5mgs, every other day and see how that may help..
also the most important factor in all this is total control of EMOTIOMS,STRESS,ACTIVITIES, and beleive me if it worked for me it can work for every body
best of luck
Andre
The droopy eye lids went away at 40 of prednisone. I leveled there for awhile and headed back down on the prednisone, Now I am at 7 again and doing well.
Every time I
Typing always brings on some weakness so I do a little at a time.
This is my Exit strategy for prednisone:
Yes symptoms can reappear when tapering. I always go super super slow so that I know right where to stop. I find it can take a month for the drop to show its face.
When I drop and symptoms appear I immediately stop the taper and might have to go up a hair.
I do have an exit strategy for getting off prednisone but every time I go below 7 my symptoms reappear. I end up going up to 10. I gave up. I will most likely remain where I think I am most safe and no symptoms.
Most likely I will be at 7 for the rest of my life.
Best choice for me. Better than mg symptoms.
Yes, I notice good diet helps. Exercise in a pool helps and about 1 mile of walking at a time. Too much ground exercise causes problems for me.
Hopefully you can begin to drop a bit after your vision improves.
The first year or 2 or 3 is the hardest with this disease. This website helped me so so so much. I have had this disease now for about 11 years and I am doing well managing. I come on once in a while to help others if I can.
Take care and I hope you are having a good day. The only advice i have is...
this disease is so different because if you push it it only makes things worse. Rest is productive. Hard to believe because todays society is all about go go go. That never worked for me with this disease. I usually loose more time if I push too hard. Take Care Ann
I reread your posting.
After my crisis I had to go on 60.of prednisone. 60 was a nightmare.
I think severe moon face and mental issues happen mostly at higher doses than 20. But most likely it is a personal thing. I was a mess at 60.
under 7 symptoms always show their nasty head
i understand perfectly the ups and down of your problems, as i mentioned before, even do we all humans, we all react differently from meds.
i may not have explain properly my intent, so i will try to be more clear, as i explained prednisone when not taken , it takes 2 days to dissipate from the body, i would never tell you anything that may affect you differently.
as you are on 7 mgs daily, if you stretch the days as you try one day yes on day no,, since the dose is almost minimum, i beleive that you will be totaly safe, but it may be ok for you, also you can triy it for 1 week, go back to every day, and see the results
dont forget our body produce 5 to mgs. daily of corticoid steroids so in that fact and my experience of trials and error i can make this sugestion, dont forget i am mger for 11 yrs, and when to very harsh periods to get where i am now
best of luck
Andre
sorry to hear the troubles you are going with your mg.i know that all this creat confusion in manny people.
iam with mg generilied for the last 11yrs + ,and by reading yur blog i found that they are some missing components regarding your control of mg.
plasmas, and ivg do not control your mg, all of us mgrs, are taking mestidone (pyrystigame for generic) this is the basic med for it, also know their is others solutions. and also predinisone,
i acn speak from my experiences when i got out of the hospital it was with 1000mgs mestidone and 200 mgs prednisone daily that afte a week i start drawing back untill i reached the minimum of 30 mgs. mestidone and 5 mgs, every other day.
the plasmapheris and ivgs, are nothing but a cleaning of your body .dead neuros. so when you get a reverse of your control of mg, likely drs. do a program of those 2 components.
on the part of prednisone you will have some serious effect when you are in a high dose of higher than 35 mgs daily for an extented period of timemostly like
high blood pressure
colesterol
weight gain, and others.
that is why it is imperative that you get total control of your emotions and stress, also i would suggest that you have a total change of your daily diet, and control of your activities, as you will get tired you should take a break.
walking is the best things for relaxation as well exercises. also i woul;d suggest that you and your neuro have a very extensive conversation for guidance of your mg.
you should not feel despair from not understanding what is going one,, you take a back steep and deep breath, we all are in the same boat, and we realy on each other for view all are experiences and how some of us have been able to control our destiny
best of luck
Andre
Just to clarify
Along with Prednisone over the past 18mths I had been on 750mg mycophenolate for 10 months but it did not get absorbed into my system. Now on Ciclosporin and it is not reaching therapeutic levels after 7 mths. In the early days I was on Mestinon but had difficult side effects with incontinence, large saliva production which I couldn’t swallow particularly at night. One of the challenges of where I live (Adelaide, Australia) is getting into neurologist- just not enough trained. For me, it has been 5 months between some visits while I have had difficult symptoms and questions to raise. I have now been referred to and seen a professor of neurology who is recommending we escalate treatment options. I will find out his recommendations in a few weeks. Throughout all this I remain busy, positive and hopeful. I enjoy playing Croquet 2-3 time a week, attend an hour’s rehab Pilates group and very addicted to my large cottage garden. As a former chef and Christian minister we have lots of friends and family around for meals. Life is basically good but vastly different to 2 years ago.
Again, thank you, Tony