A few questions for Bill if he is up for it ;-)
Regarding This ...
I am ONLY taking about
17 pills a day (many are various supplements) and that is about
half of what I took 7 years ago when this started. If your current doctor is not experienced treating mctd or lupus or myositis diseases it might be worthwhile to get a second opinion. Aggressive treatment is important to get your immune system under control and not make your symptoms worse.
And This ....
Initially, mine was out of control but eventually was brought under control and I have been in remission for almost 7 years.
Could you tell me what symptoms you had and what meds + vitamins + exercise (or anything else) you used to bring your condition under control in the initial stages.
Also did you ever get tested for Vitamin D and was it low when you were first diagnosed ?
I have been diagnosed with MCTD 4 months ago after many tests and scans. Originally thought it was a rotator-cuff problem in both shoulders from a rigging work accident. Shoulders just never got better. Now have muscle/joint problems and never ending ... Ahemm ... type cough. On 10ml Prednisolone per day for 2 months already and repeat for 2 more with taper-down. .... In my opinion I don't think this dose is enough, even though I hate taking it.
I'm not up to your pill count but would be interested in what you are taking and why you feel they are working.
So far I am on ...
Vitamins x 1 ... D,E,C,B12,Multi
Fish Oil x 1 ... Emu Oil x 2 ... Magnesium x 1
Coq10 x 1 & Calcium+D every second day
Washed down with ...
1 x desert spoon VitalGreens & Pea Protein in 800ml water in morning.
No dairy or wheat or processed meats and only brown rice.
No alcohol ! ... (Non alcohol Red Wine works ok)
Changing this got my blood liver and iron studies back in order.
Best advice I have been given so far ... from Naturopath not Doctor.
Get muscles stretched and poked every week by Osteopath and Light gym 2 x a week.
I push for blood tests every 2-4 weeks and log all in spreadsheet to check for patterns. (can't fix a fault without a log)
Got this book to see what Prednisone does to me and how to counter it.
Even with all this, I feel like I'm very slowly slipping backwards.
I have been pulling the internet to pieces looking for any clues and would appreciate any assistance and advice you could give.
Thanks Very Much