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...
Hi everyone....I'm sorry I don't get on here much these days - I do check in from time to time and can't believe how many new faces there are!
I need some advice - and I know you are all very experienced and will give me honest advice. For those who don't remember me (I'll try to keep it short!) it took 10 years to get a "clinical" diagnosis as no test (AcHR, Musk, EMG and SFEMG) confirmed my symptoms...lucky me! My relief at a diagnosis was short lived when Neuro #2 decided not to treat beyond mestinon....which lost it magic after 4 months :(
Thankfully last September my GP took pity and started me on 25mg of Prednisolone, which made me feel better in a couple of weeks than I'd felt in years! He put me on a quick taper to 5mg...but I keep getting stuck at 15mg!!! I can stay stable enough to keep just ahead of my symptoms and slowly build up my stamina after being sofa bound for almost 2 years!!
My main question is how worried should I be about the 15mg dose in terms of side effects?? I keep trying to lower to 14mg every couple of weeks...or when stable but after 2-4 days the symptoms increase and I feel like I've been hit by a bus....the MG bus!! Apart from a slightly bloated face and rapidly thinning hair I think I'm doing well. I do think my blood sugar/blood pressure may be dropping at times (feeling nauseous, especially before food and dizzy, sometimes a little shaky) but I've always been on the low side so it may be unrelated - I'm also trying a high protein "caveman/Paleo" diet as I read it can help some autoimmune diseases so I'm not sure if that may not help? My legs seem hot at night and occasionally I sweat - but my dog lies on me feet...so that can't help! lol!
I have written to another Neuro (3rd time lucky?!) who is happy to see me but is the other side of the country and I can't leave my young daughters at the moment as they have just been through a huge trauma.....another reason I am proud I still managed to taper to 15mg. I am scared to do another round with the doctors and potentially end up worse off if they try to take away the steroids...but know I can't really just keep avoiding my GP like I am now!! I am going to book in and get my bloods checked in the hope that my body is coping ok so far after 8 months and find the energy to face another round but I have to say it is not appealing to me, and I need all of my energy for my daughters right now too, bless them.
I would be so grateful for any advice or thoughts about my dose - I know we are all different but I value your experiences and expertise!
Thank you.x
I need some advice - and I know you are all very experienced and will give me honest advice. For those who don't remember me (I'll try to keep it short!) it took 10 years to get a "clinical" diagnosis as no test (AcHR, Musk, EMG and SFEMG) confirmed my symptoms...lucky me! My relief at a diagnosis was short lived when Neuro #2 decided not to treat beyond mestinon....which lost it magic after 4 months :(
Thankfully last September my GP took pity and started me on 25mg of Prednisolone, which made me feel better in a couple of weeks than I'd felt in years! He put me on a quick taper to 5mg...but I keep getting stuck at 15mg!!! I can stay stable enough to keep just ahead of my symptoms and slowly build up my stamina after being sofa bound for almost 2 years!!
My main question is how worried should I be about the 15mg dose in terms of side effects?? I keep trying to lower to 14mg every couple of weeks...or when stable but after 2-4 days the symptoms increase and I feel like I've been hit by a bus....the MG bus!! Apart from a slightly bloated face and rapidly thinning hair I think I'm doing well. I do think my blood sugar/blood pressure may be dropping at times (feeling nauseous, especially before food and dizzy, sometimes a little shaky) but I've always been on the low side so it may be unrelated - I'm also trying a high protein "caveman/Paleo" diet as I read it can help some autoimmune diseases so I'm not sure if that may not help? My legs seem hot at night and occasionally I sweat - but my dog lies on me feet...so that can't help! lol!
I have written to another Neuro (3rd time lucky?!) who is happy to see me but is the other side of the country and I can't leave my young daughters at the moment as they have just been through a huge trauma.....another reason I am proud I still managed to taper to 15mg. I am scared to do another round with the doctors and potentially end up worse off if they try to take away the steroids...but know I can't really just keep avoiding my GP like I am now!! I am going to book in and get my bloods checked in the hope that my body is coping ok so far after 8 months and find the energy to face another round but I have to say it is not appealing to me, and I need all of my energy for my daughters right now too, bless them.
I would be so grateful for any advice or thoughts about my dose - I know we are all different but I value your experiences and expertise!
Thank you.x
Ok so the basics with prednsone is that any dose below 8 - 10mg has very little affect on the body and can be taken long term with minimal side effects or issues. Any dose over 10mg and the prednisone has shut down your own adrenal glands. Our adrenal glands naturally make about 8 - 10mg of cortisol each day, so if we take an artifical version of the cortisol at or above its normal range (8-10mg) such as prednisone, our bodies sense this and stop making its own. Its when the body stops making its own that we start to get the side effects such as a puffy face, appetite changes and thinning hair.
Can you try alternate day dosing? 15mg/14mg/15mg/14mg etc... check with your PCP about this. For many who struggle with reducing the dose that will help. It sounds like you found your therapeutic threshold dose and it might take a bit to taper that down slowly.
From the sounds of it you may do better wih your PCP at least for now as it sounds like the neuros there are playing "by the book" only not realizing that about 18% of the MG cases are diagnosed symptomatically only and by thier response to medications. Whats the old saying??
"If it walks like a duck, quacks like a duck....it must be a duck"
Hang in there, it sounds like you are making progress and by the use of prednisone alone, you have made progress in a treatment and frankly added another piece to the diagnostic puzzle.
As always we all hear will try and gie the best advice we can, but always coordiante with your doctor especially whn it comes to any changes in our meds. Having this knowledge you can suggest a change like this and see what your docotr says.
It's great to see you back !!
Take care
Joe
I am totally stuck at 7. I understand being stuck.
If you really wan to get down you can drop just 1 on one day a week. For example do 14 on Mondays. Then in a month do 14 on Monday and Wednesday.Then in a month drop one on another day also. Slow slow drops work the best.
That was a technique I used once and liked it.
But I will admit....my body would take a month to realize I was dropping then it would act up.
I am probably going to be at 7 for a long time. I was at 15 for a long time too.
My Neuro told me to aim for 10mg or less if possible.
When you are under high stress, it is more difficult to taper at all. You might even have to go up a little.
It took me 8 months to go from 60mg to 20. It then took 9 months to go from 20mg to 5mg, still tapering now. The longer time you have been taking prednisolone, the longer a taper will take. I had been years taking prednisone, so it required time for the adrenals to wake up. I am not med free, I receive Rituxan infusions.
I tapered approx 1mg a month, from 20 mg on down
Symptoms. Yes, you are at the dose level where the adrenals and other organs are getting a wake up call. They like the prednisolone, don't want to wake up? And so maybe symptoms do flare up, at least it seems that way to me.
In the worst case, as with our dear departed friend, Elinor, taking prednisone (and methylprednisone) masked the underlying pancreas cancer that was causing the MG symptoms and probably delayed the diagnosis either by its effect, or by the doctors not thinking they needed to look beyond the MG.
When we take mestinon and it makes us feel better, we are quite sure we have MG as not much else is improved by that drug. With prednisone, used in treatment of dozens of various conditions, feeling better is not as specific as to what is being treated in us -- and many of us have multiple conditions which we may know or not know about.
Things are complicated and it is not a good practice to avoid doctors to try to manage our medications, especially with prednisone. I did a little of this in planning my own taper rate, but that was trying to get off of the drug, not trying to stay on it.
Good Luck
I think now I'm lower I might try again and maybe just initially try 15mg alternated with 10mg going down to 5mg on the alternate day and hopefully then down to 15mg every other day in the hope that may work better for me. I can only try! :)
Rhanson, I appreciate your reply and I understand what you are saying. Poor Elinor struggled with the Doctors for a very long time and fought to be taken seriously with very grave consequences. I have to say that she continued to battle to Doctors when most of us with difficult diagnostic paths would have given up! She could not have done more to find out what was wrong with her and I know how hard that is when the doctors continually want to dismiss you, as they did her. I think your comment is unfair as I would never put myself at risk and I think you misunderstood me - I wasn't looking to avoid my doctor so that I could stay on Prednisolone, like everyone here - I have no desire to be on any medication! But I am very grateful to be feeling better and will take what I can! Like you, I am just looking for a way to taper whist remaining stable and avoiding my doctor simply because I don't want to rush the taper and need to find a way that works for my body - otherwise I have risked all of the side effects for months for absolutely no reason to end up back at square one. I asked the question how bad a 15mg dose is as I don't want to be risking my body in any way and know avoiding the Doctor is not a long term solution, I was just hoping educate myself at what the level of risk potentially is whilst I try to get my dose down to a better level or where my Doctor would like me to be (nearer the 5mg) before I see him again.
If I'm not mistaken, I believe that you've also had issues with the national health care in your country, and I am sure that contributes even more to the miserable situation of dealing with doctors.
Stay persistent like you're doing. This disease effects everyone individually. With that, most people have different treatment paths.
You'll find your sweet spot. Take Care!
good luck
chuck