Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group osteoporosis / osteopenia and AS

thanks to everyone so far,

i'm not sure if its the preAS or the early perimenopause or the being born with outwardly thin bones, but it shouldn't be lack of exercise or diet causing the 1/2 way between osteoporosis and normal initially at the age of 38 (moderate osteopenia is the term they used on the report) because i've been very good with both diet and exercise.

just wondering if its another clue.
sounds like maybe,
but not enough to convince the doctors of anything.

sue

Sue - I have had a DEXA scan done, am borderline osteopenia. I am on Strontium. Strontium Bone-Maker (not the Protelos Strontium Ranelate - which is bulked out with Aspartame). You can purchase Strontium Bone-Maker over the counter/on-line. It is not that expensive. There are no side effects excepting some constipation, which is easily taken care of.

BTW there are side effects with the Protellos Strontium Ranelate due to the Aspartame...!!

The Strontium Ranelate was scripted for me by my consultant rheumatologist at one of our leading teaching hospitals here in the UK. Just I refuse to take Aspartame so choose to take Strontium Bone-Maker (same product, sans Aspartame). My rheumy is not too happy with the Bis drugs - they have found many problems with side effects...also, the Bis drugs stop take up of new bone, the drugs harden old bone which eventually becomes brittle in any event, leading eventually to fractures, especially vertebrae. On top of all this, the patient faces nasty side effects and the possibility of developing ONJ. No need to go there. Strontium works. A number of trials have taken place and it increases bone take-up, it works.

If you search here you will find a lot of info on the Bis drugs - don't go there, ONJ, i.e. osteonecrosis of the jaw and other limbs, and even more growing evidence in that direction. You will also find a lot of info on the Strontium. Strontium Ranelate has been scripted in Europe for a long time now. It is not yet passed by the FDA in the US though there is an American company presently compounding a Strontium Manelate - just so hope that they leave out that blasted Aspartame.

So check it all out here. Lots of info - and you can also check it out with Google.

Molly
Keeping on Keeping on (and just about to take my nightly Strontium Bone-Maker)

molly,

thanks, i'll look into the strontium.
i know what you mean by the fillers like aspartame,
like when i needed to take pysllium for my gastritis/diarrhea,
metamucil comes with all kinds of flavorings and chemicals and artificial sweetners when you can buy plain psyllium and add it to a little juice or herbal tea and be just fine.

thanks for the info on the bis drugs, i think i had heard some rumors similar to this, but didn't have this kind of info, so thanks.

i did talk to the arthritis foundation today (a suggestion by kat to another person in an old post) and one of the things we talked about was the meds for osteopenia/osteoporosis, and the woman i spoke to said all the available drugs will irritate the stomach. which brings me back to...investigating the strontium.

sue

I had x rays done in November that showed osteopenia. They then sent me for a dexa scan to have a better look and found it was osteoporosis (apparently they cant really tell much from the x rays but they do give a clue!) with a score of -3.7 whatever that means.

Currently on actonel to build them back up and undergoing tests to find out why, at 35, I have osteo.

If I had the time and energy I would campaign for DEXA scans for everyone showing symptoms of Osteoporosis, even if they have been diagnosed with AS etc. They scanned me too late and I am now at risk of fractures etc at an earlier age than I should be.

daz,

i agree with you 100%.

i had to petition 3 different doctors when i was 37 and going through early perimenopause for my dexa scan. I was "too young" to have a scan, they all said.

but i just insisted, as i figured with my early hormonal change and being outwardly thin boned, i wanted a base-line. i was a little surprised i was 1/2 between good and osteopenia (what they called moderate osteopenia), as i had been good all my life about diet (including calcium and exercise). now i realize it might be from early perimenopause, AS, or other.

i believe all women should be allowed to have a dexa scan when they are supposed to be at their peak for bone health (early 30s) for a base-line dexa scan. and then be monitored at certain intervals based on their own personal health history. maybe not just women.

they do routine pap smears and breast exams to screen for cancer. osteoporosis is a serious health problem too. i know dexa scans are expensive, but so is treating patients with osteoporosis if they have complications (broken bones), not to mention the potential pain. preventative medicine is cheaper than treatment, in my opinion. i wish the medical community believed that as well.

sue

Hi Sue22,
I'm another AS'er with Osteoporosis. I didn't know anything about it at the time and it completely caught me off guard. After I lossed my chompers I did get suspicious, but at that time I just blamed it on the AS itself. I was diagnosed about 3 years ago when my back started fracturing, and it's roughly about 30% bone loss in my lumbar spine. I'd have to look on my BMD CD to tell exactly how bad it actually is but it's bad enough for being a male at my age (37). I was under diagnosed but I don't know for how long. I could have had it for a long time but nobody thought to check me out. It's osteoporosis in my spine and osteopenia in my arms.

I used to take osteoporosis meds but I can't anymore. Actually I can't have Biologics or NSAID's either. I developed a heart condition while being on them. I take meds for other things though. (why do I feel like I had to say that???) Now I am taking the same as Molly... Strontium Bone Maker, and I haven't had a problem with it. I also take vitamin D3 and a good all-around calcium supplement (both a requirement for Strontium) and I feel like things are getting better in that department. Only time will tell for sure when I get my next BMD scan.

Take care,
James.

james,
thanks for the info. i've been taking calcium and (in the fall/winter/spring) vit D. so far, i've been holding steady with no further loss since the first test.

james and others,
if i'm holding steady, do you think i should take the strontium now to increase my bone density now? or do you think i should start taking strontium only if i continue to lose bone density?

thanks,

sue

Sue - I would start taking the Strontium now. The wonder of Strontium is that it A. works, does build up bone as opposed to the Bisphosphonate drugs that ONLY harden existing bone and does NOT build UP bone ans B. basically no side effects, apart from some constipation - which is soon dealt with.

James, remember that the machine that takes yr DEXA scan wil have to be programmed to 'read' for Strontium... You'll need to check back with yr doctor/rheumy about that. Otherwise I have a vague idea that you can come off Strontium for a few months and then have the DEXA scan without the machine having to be reprogrammed to 'read' for the Strontium. (Posistive feed-back contiunes with the Strontium.)

Just got a new lot of supplements this afternoon: Calcium/Magnesium/Vit-D3; plus a Vit-D3 on its own; Co-Q-10; Vit-E; Rose Hip powder; Efalex Oil - Omega 3 & 6. Should see me through the rest of the winter

Molly
Keeping on Keeping on (yep, take those supplements!)

molly,
thanks for the advice. i tried magnesium supplement and it loosened my bowels too much. so if strontium does the opposite, and both are supposed to be good for bone health, maybe they can balance each other out. i don't worry too much about constipation, fiber and lots of water, keep that under control for me. its the opposite that is much harder for me, though psyllium will work in a pinch.

i will look into strontium and if there is no reason not to take it,
i will start taking it. my great grandmother had osteoporosis,
and i know it was extremely painful for her.

sue

Sue,
That is great news about no bone loss since your first test... very good!
However, I think I would take it now to try to get the bones at full density. It's entirely up to you though... It's natural and already found in or bodies just like the calcium is... so it's not like putting something foreign in our bodies. I spent alot of time looking for info on strontium before taking it, and I couldn't find anybody who didn't like taking it, or got negative results from it. One more small thing, the makers of the strontium advise not to take the calcium and the strontium at the same time, only because each of them take a while to dissolve and absorb. If you take both at the same time you may only absorb half the strontium and half the calcium, which would make it only half effective.

Molly,
I got my shipment in yesterday (just 'one month at a time' supply) LOL. Thanks for the warning about the mod to the machine. I don't know when my next BMD scan is. It's still a while yet I think.

Take care,
James.