GCA AND CURVATURE OF SPINE: Is there anybody out... - PMRGCAuk

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GCA AND CURVATURE OF SPINE

karools16 profile image
14 Replies

Is there anybody out there who is dealing with GCA and Curvature of the spine.I was first diagnosed with curvature at age 12.Wore a brace, which was extremely painful and did nothing. Yesterday, my nurse measured me, and I have lost 4" in height. Distressing. As a child, my Mother was warned of the danger of an op, and in October, last year, a spinal consultant, re-iterated that.Had a Dexa scan, which showed very thin bones. Take Ibandronic Acid for that.

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piglette profile image
piglette

Are you also taking vit D and calcium? It is recommended with Ibandronic Acid. My grandfather had curvature of the spine due to polio.

karools16 profile image
karools16 in reply to piglette

Hello piglette. I was taking Adcal-c, but my Dr took me off them when I said I was nauseous to the point of being sick.Did your grandfather lose height?

HeronNS profile image
HeronNS in reply to karools16

They should have found something else that would not upset you so much. Also calcium and D are not the only things needed for bone health. Think magnesium, Vitamin K2, and a number of other things, lots of them available in the diet, some needing supplementation. Are you taking anything else? Have you been able to manage any exercise lately? An acquaintance of mine was becoming very bent over with osteoporosis but she has taken to using Nordic walking poles and is much more straight now. She can't use the poles quite the authentic way, but having them in her hands helps her greatly and she is looking and feeling much better.

I was appalled to learn last year that I'd lost over an inch in height, completely unaware (why can I still reach those things on the top shelf???) but it could have happened before I started taking pred. Who knows!

karools16 profile image
karools16 in reply to HeronNS

HeronNS,I don't take any other vitamins etc. I was recently diagnosed with water on the lungs and could hardly walk at all without extreme brethlessness. With the water tabs, my breathing has inproved, but not yet enough to get me to the bus stop, 10 mins away. Had extensive respiratory tests, and after 1 month, still waiting for results. My consultant thinks that the curvature may be pressing on my lungs. The past few days, I am constantly on pain relief, as the backache is so bad. I do my own housework and gardening. All very frustrating as I am independent.

HeronNS profile image
HeronNS in reply to karools16

Karools, that sounds awful Do you think the spine is the main cause of your lung problem - lack of space for them to function properly? I really hope you get some effective relief soon. Please let us know how you are getting on. 💕

karools16 profile image
karools16 in reply to HeronNS

Thanks HeronNS. The tests will, hopefully, tell what's what. I feel fantastic right now, as I have been to town to do some errands and caught the bus home. I walked the 10 min walk without stopping to rest. My heavy breathing does cause some folk to look and stare, but I can do nothing about that.

piglette profile image
piglette in reply to karools16

I think he did lose height. He had polio when he was eight years old. Are you saying the vit D made you nauseous? That is unusual.

karools16 profile image
karools16 in reply to piglette

piglette, I can't prove it was the Adcal-D, but since I stopped it, I haven't been sick. However, I may re-introduce, as it is needed.

PMRpro profile image
PMRproAmbassador in reply to piglette

Quite a few people have complained of stomach problems at various times but I don't think it is the vit D, I think it is either the form of calcium or the fillers so trying a different sort is always a good idea.

karools16 profile image
karools16 in reply to PMRpro

Thanks PMRpro. Will mention to Dr. when I see him next week.

HeronNS profile image
HeronNS in reply to karools16

I think AdCal is the carbonate, isn't it? Calcium citrate may be more easily tolerated and, apparently, better absorbed. Get Vitamin K2 as well! Don't be surprised if your doctor has never heard of it, or confuses it with K1.

authoritynutrition.com/vita...

karools16 profile image
karools16 in reply to HeronNS

I'll be lucky if I even get to this topic in a 10 min. appt. Our drs. don't like you to come with a 'shopping-list' of ailments, just 1 or 2, make another appt, wait 3 weeks, and so it goes, ad nauseam!

HeronNS profile image
HeronNS in reply to karools16

That may be a good thing. You could just get the supplements on your own! I know in the UK a lot of things are covered by your insurance which here are just OTC and we pay out of pocket. Supplements tend to be fairly inexpensive for what you're getting, although the K2 is a bit pricey. Some people can get it in their diet, mostly through animals which have been grass (never grain) fed, and their products - milk, butter, eggs. Apparently we can also manufacture a little in our own gut, but I have no idea how efficient we are. Fermented foods contain some, and may stimulate our own ability to make it, but I really don't know if this is true. I've been taking a calcium supplement which is made from New Zealand animal bones (free of mad cow), calcium hydroxyapatite, having read that it is more effectively absorbed by people on prednisone. Before that, and actually have recently started again for one of my daily doses, I always had calcium citrate in a capsule which included D3 and magnesium.

karools16 profile image
karools16

I'll just wait and see. Not keen to add more tablets, and have to be careful with warfarin.

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