Originally Posted by Unsure81

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