Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS and Osteoporosis

Hi all,
I was wondering about meds for Osteoporosis. Since it seems that if you have AS eventualy it will turn on your bones especially after you fuse.
I am wondering if any one is taking Actonel, Fosamax, Boniva or any of these meds for the osteoporosis. Which one is going to win, the meds to prevent broken hip etc.or the AS attacking the bones.
If AS is going to win I can't see why we would take these meds with all of their side affects. I am taking Actonel. The doctor scared me into taking it by telling me if I brake a hip I will not leave the hospital. Interesting I never had a problem with falling.

I would love to get your input on this.


Doreen

Hi Doreen

Hope you get everything figured out and get the right help.

As far as osteoporosis this can be a latter stage of AS. As your spine becomes fused it leaches bone from the rest of the spine. Also drugs like MTX can increase bone loss.

As far as a hip fracture I do not know your age but it is something to be careful of. A friend of the family died last month from complications from a hip fracture. He was 76. It set off a raging infection and shut down his internal organs. But I think your age and general health has allot to do with your risk factors. If you are taking any immune-depressant drugs then your risk is even higher.

As far as what drug is best I cannot help you there.

Tim

Doreen

My doctor just put me on Fosamax and massive doses of vitamin D, so you aren't alone with this problem. I was in a bit of disbelief that a male under 30 would have osteoporosis, but what can you do? My view is that if a medicine can help, I'm going to try it, the AS won't win without a fight. Good luck with everything.

Jeff

Hi Doreen.
I can't say what is most effective and I can't say what is best either. I think what would have helped me is that if I would have known that I had Osteoporosis (undiagnosed for ??? number of years), or I knew that AS can lead to Osteoporosis, I would have taken a good calcium supplement as soon I started fusing.

I am prescribed calcium\magnesium\vitamin-D 3 times a day, and I take injectable Boniva infused every 3 months. I am not aware of any new bone growth yet, because this is new treatment to me, but my last Bone Mineral Density Scan showed I had 31% bone loss. However I have been taking calcium daily for the last 2 or 3 years when I first got checked at 28% loss. I also tried to take Fosamax (but couldn't do it very well because of side effects in the esophagus) during that time.

After I fused I broke about half of my teeth, I broke a rib, and I have two large fractures in my spine (vertebral compressions). One still hurts (my back), the other is what started my my neck's bad posture (which sill hurts but the pain manageable because it fused again).

Molly may see your post and suggest and good sounding alternative to bone building drugs, which I have my eye on too, but I have to ask my doctor first.

Take Care,
James

Tim Jeff and James,
I want to thank you for your input. based on what I can tell I need to stay on the Actonel I am 73 and still exercising and doing the treadmill and weights.
So far this year I am taking more meds than I have in the more than 50 years I have suffered with AS. I have Osteoporosis, HBP, High cholestorol, and newest monster diabetes.
That better be it I am just not liking all of these pills.

Anyway, Thanks again
Blessings
Doreen

hiya,

I'm on pamidronate which is a three monthly infusion, no or little side effects seems to help the rib mid back pain for a week or so and it quells down the I've got flu coming all the time feeling for about 10 days.

My bone density has settled no further loss after 2 years. the oral stuff made me vomit and that was n't good for my neck.....so I went for the infusions.

Cost is an important factor I get mine at a discount rate but trying to get it normally was $200 AUD per dose....the oral meds are cheaper over here. There is another infusion which is annually which works out cheaper but the best results seem to be from the pamidronate.

I do qualify for the oral pills on medicare but it would cost more to treat my neck from the vomiting wretching etc....

Dave

heya doreen, if tried the fosamax and the actonel but long term use may cause heart problems, in on boniva now just 1 pill a month and so far there is no side effects and the long term side effects are very minimal,,fosamax is a 1 aweek pill and it does help i went from a -4.7 to -2.4 in a 5 yr time frame so it does worjk its just that i had some long term side effect and had to change actonel really didnt do anything but give me side effects right away so i switched to fosomax now im on boniva so maybe if ya talk to your doc somemore maybe ya can come up with a better solution but my doc was really glad for me to start the boniva...hope this helps....oak

Hi Oak,
I started have been on the Actonel for six months now. I have not had any visable side affects. But we know heart problems don't come like a little pain, I am hoping it works for me.
I guess I will have to wait until I go for my physical next year to see if it is working.
Right now I am paying $25.00 a month for Actonel. Boniva would costs $60.00
Last month I was diagnosed with diabetes so this is one more problem to deal with.

Anyway, thanks for your response,

Doreen

Hi Davo,
I have never heard of infusions, But I am sure it would costs a lot more than pills. And if it is some injection I don't even want to go there.
How can anyone even afford one med for $200.00 how would you pay for in my case four other drugs. That is the reason I never took anything for AS except Asprin. And thank God it worked.
So far I have not seen any visable side affects from the Actonl. I have been taking it for six months.
I guess with AS there is always something.

Thanks for your response,
Doreen

Hi Doreen - Please go to 'Search' then put in 'Strontium Ranelate' then fill in the search to 1 year - up will come my posts for Strontium Ranelate and the various discussions. Think you will find them interesting.

The Bisphosphonates inhibit the take-up of new bone. They harden up the existing bone which in turn becomes brittle - yes, eventually more fractures! Medics are becoming increasingly disenchanted with the Bisphosphonates - they are not living up to the expected and hoped for results - that and plus the side effects which includes ONJ (osteonecrosis of the jaw, and can effect other parts - knee being one.)

I am 70yrs of age. Was DX AS Jan this year and this after numerous years...(being female and negative, what's new?) Have a compression fracture etc etc. I take Strontium Bone-Maker - same as S. Ranelate but without the additon of Aspartame as a filler.

Strontium is now considered the better way forward for treating Osteoporosis. Fortunately I have a first rate rheumy who, incidently, heads up the rheumy faculty of a large and first rate teaching hospital here in the UK.

Google up Strontium Ranelate - (reprise Strontium Bone-Maker is the same but sans the Aspartame!) Aspartame you do not need, Strontium you do need - and Strontium does work. Good stuff and without the necrosis factors...check it out. IF you are prepared to go the route of potential necrosis factors then...but the choice is yours.

All the info that I posted is here on the forum - search 'Strontium Ranelate'.

I am doing very well with: Vit-D; Vit-E; Vit-K - helps in promoting strong bones; Calcium; Mag-Sulph - which helps uptake of calcium/Vit-D; Strontium Bone-Maker.

You've cracked it chum - an NO adverse effects.

Molly
Keeping on Keeping on (you bet)