How worried should I be??
 

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 nauseas 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

So sorry to hear what you are going through. I am new here, but not new to the use of Prednisone (taken for another autoimmune disease). The dose you are on (15mg) is not much, especially if it is holding your symptoms in check, but be aware that Prednisone is the opposite of drinking from the fountain of youth! It has an aging effect on many body systems. It sounds as though for now it is a necessary evil, but the goal should be to start on another med for MG in order to decrease and/or stop Prednisone. You may also want to talk to your doc about taking the 15mg every other day to see if you can remain stable on that and allow for your body to begin to produce its own cortisol. Sometimes the feeling of being hit by an MG truck is also the feeling of being hit by the decreasing Prednisone truck! The prednisone truck can be a big one, this is why docs often prescribe every other day when tapering someone who has been on it a long time ( over 3 months). I hope this has helped in some small way. My best to you!

Thank you so much, I did try alternate day dosing but my Doctor wanted to double dose on the day I took it...which was too much for me!! And then I got a real drop off!! But I think now I'm lower I might try again and maybe just initially try 10mg going down to 5mg on the alternate day and hopefully then down to 15mg every other day. Thanks again!!:hug:

do you have MG or lambert eaton?
the mestinon did nothing alone with my lambert eaton
but then combined with the 3,4 dap it works good
but for ME they only work together
But i don't think they give the 3,4 dap for MG patients.. hence why I asked if you have MG or Lambert Eaton as this place likes to combine the 2 into 1 forum( stupid)

I have been on 15mg of the prednisone EVERY OTHER DAY for over a year no issues