Vitamin D

Hi Sally.


I am taking Mestinon ( Pyridostigimine bromide)
60mg x 4 times a day.
As well as the 80mg of steroids and 1x 500mg of Mycophenolate. How many Mestinon tablets do you take and how far apart? because I seem to benefit from taking 4 one around 7 am then every 3-4 hours but not more than 4 albeit my prescription states take just 3 times a day?


Regards


Len

Len, No need for Apologies!! To me that is the best to start at the beginning. By the way the 80,000 iu was the therapeutic dose I was on. Isn't coming out of remission fun (sarcasm)!!
I just came out of one Jan. 2020 that had lasted 10 years. But for me I finally was able to get a diagnosis in Oct. 2020. ( In 2005 when I got the therapeutic dose of vitamin D. The Dr's. we're getting ready to send me to a nursing home for the rest of my life. I was that bad and they couldn't figure it out.) I also went into breathing crisis Jan. 2021 (it took most of the year to start getting better). Not near as bad as yours!! That sounds like it was a rough time for you and would be for anyone!!
But I do understand where you are coming from. You have been through a lot here in the last year & 1/4 Ish!!
Are you working with a speech therapist to help with swallowing problems?
Those peg's are not fun!! I have never had one, but I sat with a lady who was bedridden from MS who did. She could only move her eyes.
I have also read reports about vitamin D helping. Not only for MG but all autoimmune disorders.
I do have to tell you that I do put mushroom in the sun light before I cook with them. Because they are the only food that will continue to collect vitamin D after harvest.
You know there are a lot of thing people talk about that helps them. While others say it does not help. Just like us being snowflakes our treatment is a snowflake also. None of us will react the same.


I am glad to see you are going to discuss this with your Dr.s also. Because the last thing any of us want is to make matters worse for ourselves by not knowing. Keep us posted on how you are doing!! Sally... (Myasthenia-Gravis.com team member)

Hi Sally.


Thanks for your response, I really appreciate your experience with taking vitamin D.


No, I haven’t spoken to either my Doctor or neurologist about this in the first instance but was going to before making a final decision. I’m also not vitamin D deficient so am taking around 2000 iu daily which is around half of the recommended daily maximum of 4000 iu, so my research has highlighted?
I read in an independent research study that taking around 80,000 iu to 120,000 iu (Yes quite a lot) daily has helped some MG sufferers from the effects of MG, so some benefit was experienced “by some” who was involved in the research but although this research was completed with relative success it was also advised that this research was “completed” but “NOT PROVEN” and is “Harmless” so presume that this was a rather a small independent study. This conflicts with an alternative research that states that taking this rather excessive amount of vitamin D is “HARMFULL“ since when taken, the body does not get rid of it, rather it builds up due to not being able to absorb this excessive amount rather builds to a harmful extent? This alternative research also stated that this is excessive. amount “is harmful” because once taking in this amount the body would not be able to get rid of it and can’t be reversed. So rather conflicting researches. I was at the time researching for alternative medications of benefit to MG sufferers.


My back ground and experience with MG is that I
I was first diagnosed with MG in 2010 it was only ocular i.e only 1 eye closed at that stage, so I was prescribed Mestinon at 60 mg 3 times a day by my neurologist which unfortunately did not correct the problem so was prescribed steroids at a low dose for around a year before this condition started to reverse with the eye opening again some 16 months later from first diagnosis. No other symptoms was experienced even after a few years, at this time I was being reviewed by my neurologist each year so we presume it went into remission and was eventually discharged. Then in August 2021 some ten years later i suddenly started to have tongue and speech problems and occasional minor swallowing problems, this was helped with the taking of Mestinon at the old prescribed dose and after a meeting with my neurologist again was prescribed steroids at a low dose to start with and including the Mestinon but the condition again got worse rather quickly month on month, my steroids was increased every couple of months by 10mg but this did not prevent the condition getting worse and by January 2022 I went into crisis with a major speech problem and not being able to swallow and was admitted to hospital and within 2 days was in intensive care for 4 nights with severe pneumonia, went into a high dependency ward after a couple of weeks was eventually fitted with a peg, now at home still nil by mouth after spending just under 5 weeks in total in hospital, was discharged back home to recuperate. It’s been now 4 weeks since discharge from the hospital, unfortunately still not able to swallow still being feed by peg so this is now a life changing condition for me and I’m hopefully that this may reverse or even go back into remission or at least my swallowing might improve so I am not fully dependant on the peg?


Apologies for the long statement and I don’t want to worry or concern you or send you to sleep lol but thought I would advise my full experience as an MG sufferer because this experience I’m having is so recent although hopefully very rare in my case so was the basis of my research.


Regards


Len.

Is your Vitamin D low? My experience many years before I was diagnosed but having symptoms. My vitamin D was low according to blood tests. So, I needed a therapeutic dose (high dose under Dr. supervision) for a while. For me It did help some not enough to make a difference, for a short time. I have also never been low on vitamin D again. Others may have other experiences. Have you talked with your Dr.s' to see if they thought it would help? Best Wishes!! Sally (Team Member)