Joel
12 post s
22-Mar-2008
11:56 PM
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I mentioned this a while back in a nutrition thread, but thought maybe it was worthy of its own. Before going on prednisone three months ago my neuro had my Vitamin D level checked as it is often recommended to take both Vitamin D and Calcium while on pred. Tests showed that my Vitamin D level was extremely low even before going on the pred. She put me on a 50,000 unit per week prescription dose until I reached more normal levels. Now, three months later, my Vitamin D level is back near normal and I am on a 2000 unit per day over-the-counter dose, and I am feeling great. Now I am not sure whether I improved from the pred or the Vitamin D or a combination or some other variable, but something worked. My neuro gave me a copy of a recent magazine article (Scientific American, November 2007) which talks about Vitamin D and how some recent studies show that low levels can be linked to some auto-immune diseases as well as other diseases. A google search on the net comes up with some similar findings. Since Vitamin D comes from sunlight this could explain why my mg tends to be better in the summer and fall, and worse in the winter and spring. I am curious if anybody else has noticed a correlation with seasonal sunlight levels and their mg. Now before I got pounced upon, I am not saying that Vitamin D is the cure-all and that everybody should start taking it. But it might be worth asking your neuro about this next time you see him or her, and ask whether it might be worth having your Vitamin D level checked, especially if you have limited sun exposure due to your climate (a big problem where I am) or some other factor. I'm glad my neuro had mine checked.
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Jane77
8 post s
23-Mar-2008
3:57 AM
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I had very low Vit D levels a year ago when diagnosed with two / possibly 4 or 5 autoimmune diseases. In Australia we have lots of sun but due to the cancer risk we are told to stay out of it or wear sun screen protection. After a year my Vit D levels have improved a lot but I am not feeling better yet though - still waiting for all the mg test results to come back.
Last Edited on 23-Mar-2008 4:03 AM
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Denz
6 post s
23-Mar-2008
6:00 PM
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Hi Jane,
I can certainly relate to what you are saying about the fine balance of sun in Australia - particularly where I am, in North Queensland !! Being on steroids and Imuran combined with the NQLD sun can be horrendous. After leaning (the hard way!) that no amount of sunscreen can protect you with the NQ sun and drugs combination, I now manage to go out for about 15mins every morning between 8am - 9am and in the afternoons after 4pm which certainly helps to keep my Vit D levels up with minimal risk. Your appt must be coming up soon and I have been thinking of you with the very high temperatures in SA over the past week. Hope you are able to stay in air conditioned places while the heatwave is/was on ?!?
Joel,
Interesting that you say that your MG is better in summer and fall. I find that mine is worse in Summer, particularly with the humidity and heat, and better in the cold or controlled air temperature environment. Mind you our winter temperature ranges stay within 15 - 24 degrees. I'm sure that a climate colder than 15 degrees might have some effect but I'm not game to travel to those temperatures to find out - so will take your word for it !!
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Jane77
9 post s
23-Mar-2008
7:38 PM
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Hi Denz, I am glad I am not in NQld ! Our recent heatwave ( 15 consecutive days of heat above 35 C) was enough for me! Some days by late afternoon I felt I couldn't breath. I used Ventolin inhalor a couple of times - I don't have asthma but have it here for the times I can't seem to breath. Only 3 more days to my appt and hopefully some answers or a clue to an answer. I didn't know about steroids and the sun. No one has told me about that. I have been on hydrocortisone for 18 months now - lower dose than what I read about for MG - but near a dose for Addisons Disease. Are we more sun sensitive on steroids? I know one day when I went to hose my dogs - I was near burnt to a crisp in minutes.. Jane
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smea
7 post s
24-Mar-2008
12:58 AM
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Hello all you lucky folks with nice warm weather! I am sitting here in England looking out at the snow for the fifth day running! I have been taking Prednisolone and Azathioprine for my myasthenia for 11 years now,and my understanding (and experience) is that it is Azathioprine users in particular who have to be careful about sun exposure. I have had several small sun damaged areas removed,and also find that I bruise easily and that healing is much slower, due to the Azathioprine. For the last 4 years I have regularly worn a Tilley hat (even when windsurfing in Antigua recently)and am much more careful about exposure. I think prednisolone has a similar but lesser effect. Regarding vitamin D which I also take, as well as risedronate sodium for protection against osteoporosis, I have read somewhere that it is important not to overdose on vitamin D .
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kathylee
6 post s
20-Jul-2008
10:05 AM
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I know exactly what you are talking about. I have been unduagnosed for years and just had my first MG crsis and hospitalizations. Yet 2 years ago they tested me for vit D deficiency cause my rhuemy (for Sjogrens) was major upset cause I needed demeral at times for the level of pain I was in. And yes I had nearly none in me! When I got levels up which took 6 months my stength went up significantly. I thought that was the answer yet here I am still with MG it seems....but if you look up leg weekness on google you should find vitamin D deficiency. They think in this day of fortified food products like milk wee get enough but there are no controls on the levels added so like fortified milk you'd need a couple gallons to make a dent. There is more and more on the news about D these days even drug companies are scurrying to make a viamin D drug since they found it can help a certain cancer so much.
Try to find the books by a Doctor Holick. He's the father of this line of thinking and a guide I use for reaponsible tanning which I get much worse without.
Kathylee
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