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Post by chosen on Oct 22, 2009 19:21:30 GMT -5
There is some info on the inspire website about vit not being so good. D1 25 D3 This is all new to me. I have been on the presciption version (which is suppose to be better) But now I'm reading that it can cause inflamation, which blocks the ap? I have osteoporosis and screwed up para thyroids and no thyroid due to cancer. So my Dr. wants me on it to better absorb the calcium-  ???Any thoughts out there? Thanks so much Lynn |
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Post by jeffn on Oct 22, 2009 19:52:11 GMT -5
Lynn I have heard that also. I take calcium with Vit D every day but I remember being concerned about the Vit D. I will have to look at the bottle and see how much D is in there. IIRC I decided that the amount of D I was taking was not causing inflammation or not a noticeable amount anyway. Whether I am taking enough calcium and D I don't know but will have a bone density test in the next few weeks. So I may have some insight as to whether I have hit the mark soon. My circulation appears to be better the last couple of winters so I am keeping my fingers crossed. I don't think I would enjoy brittle.
I hope someone with more concrete info will chime in on this one.
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Post by steve201 on Oct 23, 2009 11:59:15 GMT -5
I've always thought that Vit. D was a good thing..that's why some people are doing photopherisis (sp).....heat lamps and other items develope Vit D and the body needs it....just my take on it..
Steve
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Post by chosen on Oct 23, 2009 14:03:09 GMT -5
Okay! Sounds good to me! And Jeff made a good point to think about, I've not noticed my inflamation being worse since being on it. And I can always tell when it is worse! Thanks for the replies. I'll think of something else to worry about now. Until then...Lynn
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Post by jeffn on Oct 23, 2009 15:07:04 GMT -5
Lynn I did some research when they told me to take the calcium back when. Anyway I did not find anything definitive as to yes or no, I found lots of people with what seemed to be valid points about omitting it and valid points to take it. Both sides of the argument are compelling. Thats when I decided to just take the route noted in my above post because frankly I did not know what to do. It seems to have worked so far. If you find out any more good info about this issue please let us know. My sed rate went from 43 a couple of years ago to 7 last Oct. then down to 2 in May. At the time it was 43 I was on the calcium so it has not effected the inflammation to negatively. Not to say that the D has resulted in lower inflammation either. So I know the inflammation is down now I need to see what the bone density scan tells me.
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Post by chosen on Oct 23, 2009 17:43:05 GMT -5
My bone density scans are usually okay- as in not getting any worse. That's amazing though about your sed rate. My sed rate and ANA has been so high that I got comments like "Wow I've never seen one higher" It's amazing that I have done so well with such bad blood work.I have a feeling that things are improving though! I feel better and my face blemishes, rashes, etc: are greatly improved. Lynn
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Post by grammie on Oct 24, 2009 16:09:57 GMT -5
Lynn, I was advised by my chiropractice nephew-in-law to take vit D3 for it absorbs better and is better in the long run. So I switched....no other reason than that. I also take B6 which has helped with the circulation issues for I can't take any of those drugs.
Just my input.........grammie
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Post by Cubby on Oct 25, 2009 12:24:24 GMT -5
My doc would never let me take "anything" over the counter, specifically vitamins (except for Ferrous Sulfate--iron) as they all interact with something. Wo knows who is right.
Now, tho, he does let me take some vitamins.
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Post by grammie on Dec 23, 2009 19:30:38 GMT -5
Went to my holistic MD who is quite familar with SD and was told to make sure I continue with vit D and vit B6 but take them at noon to avoid any belly aches with other meds. She said to make sure I don't drop it. That's what I know....
grammie
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Post by peggypansy on Dec 26, 2009 13:34:05 GMT -5
Does anyone actually know what their Vitamin D levels are? Last year mine was 18 and I was put on a prescription vitamin D of 50,000 IU once a week for 8 weeks. The cutoff point on the test is 31. This year they tested my levels again and it was 13.5 and I'm just finishing up another prescription of 50,000 IU only this time I take them twice a week for eight weeks. I wonder if my dr. will actually follow up w/another test or do like he did last time and wait a year before testing levels again.
Peggypansy
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Post by jeffn on Dec 27, 2009 8:24:21 GMT -5
Peggy - IIRC there has been some discussion about Vit. D over on RBF. The question has been raised that for some reason SD patients test artificially low or something to that effect. You might do a search over there. I don't think I have ever had my Vit. D levels tested. I take calcium with D every day though.
Still waiting to hear results about the bone scan. They called from the doctors office to tell me I had some bone loss and to start taking calcium every day. I told the nurse that I had been doing that per their instructions for the past three years - she replied "oh".
I asked how did my recent scan compared with the one taken three years ago - she replied "oh you had one three years ago?" then "I have to find out about that, I don't know if we can compare them". So I am still waiting for a call back. I will contact them this week.
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Post by peggypansy on Dec 27, 2009 14:47:41 GMT -5
Jeff,
What is RBF? I also take calcium w/D. Started that after I was told I have osteopenia. Thinning in lower back and right hip. I just assume it is age related but w/SD, who knows?
Peggypansy
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Post by steve201 on Dec 27, 2009 17:31:10 GMT -5
peg...rbf is the road back forum.....
if your on prednisone..you will lose bone density...thus the need for more calcium and vit. d...
Steve
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Post by jeffn on Dec 27, 2009 17:44:26 GMT -5
Jeff, What is RBF? I also take calcium w/D. Started that after I was told I have osteopenia. Thinning in lower back and right hip. I just assume it is age related but w/SD, who knows? Peggypansy Peggy RBF is the Road Back Foundation dedicated to Antibiotic treatment of rheumatic diseases but they have some real "students of the disease" over there. They have a lot of info about anti inflammatory diets, different meds, and OTC additives. All sorts of info. Go here www.rbfbb.org/I have osteopenia or something that sounds like that anyway also, I could not remember what it was called earlier, thanks for the prompt. Anyway my GP said my bone density problems were probably caused by the SD and it's effect on blood supply. Thats why I would really like to have my results! Maybe this week. I am hoping things have not deteriorated further. Steve is correct about the pred. My father took too much of that and really paid the price. Prednisone seems to be a pay me now pay me later sort of med. Unfortunately so many people need it to be functional in the present to worry about the future. |
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sammie
Junior Member
Posts: 64
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Post by sammie on Jan 5, 2010 9:42:46 GMT -5
I have taken prednisone for years, currently I stopped taking it.
They give me a high dose before my infusions and doc is concerned about me having too much. It has definitely affected my bones, or else it is the SD. I can't take any of the oral drugs for osteoporosis because of my stomach. My rheummie at Hopkins sent my to a specialist there that deals with these problems.
She put on Forteo which is an injection you use every day.
She also put me on a chewable calcium with vitamin D3 don't know the dose amount off hand. I take 3 a day apart from other meds.
I don't think it has caused any problems. It seems that all I hear about is that vitamin D is important to take. So who knows? the medical field is always coming out with conflicting studies
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