Bone loss

[Debbie C]

I know I have probably asked his somewhere along the line but I recently went to the dentist and I am now losing bone loss and will probably loose a couple of teeth. I know it is from the pred but the dr refuses to let me stop. I saw a endocrinologist who told me to take Boniva once a month but he warned me I would feel terrible with muscle pain and may make me just sick in general. So you all know me ....after reading reviews about it on the comp. I decided it wasn't for me. I called him back today to see if I could use something more homeopathic and he said the only other thing is to get a injection every 6 months of Prolia. Well I don't want an shot that lasts 6 mos. in case I have problems with that. I called to talk to my dr at CC but missed her call back. SOOOOOOOOOOO my question is what s everyone taking for there bones ???????????

[renidrag]

All I take is Calcium and Vitamin D. Still six foot four. Can't speak on the tooth issue, lost all uppers in 99, swear that was my first symptom.
Dale

[Pete]

I'm taking caltrate+D twice a day. I'm having a bone density test in August to see how I'm doing. No other issues for now.

[morningsunshine]

I'm taking daily Calcium & Vitamin D as well.

My doctor also has me on an annual infusion of Reclast/Zoledronic acid to help avoid osteoporosis. I had one infusion last August with no side effect and will have another this August, as in the meantime I relapsed and am back on high doses of prednisone.

Also to note: I had Wegener's kidney involvement, but my kidneys were back to normal by the time I got the first reclast infusion.

Good luck!

[drz]

I take two types of calcium and Vitamin D daily and a generic Fosomax once a week. My bone loss has been minimal and notice no special side effects from the meds. I lost one tooth but it was attributed to a chronic infection in the gums related to suppressed immune system.

[Urbanator]

My mom has begun to have tooth loss since 50mg of pred. We've increased calcium and Vitamin D to try to prevent it.


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[Alias]

Fosamax was prescribed for me, but if my repeat DEXA shows nothing dramatic I will be able to discontinue it. (My first one showed some minor changes, but that was right after I started treatment, so probably this was a finding consistent with my age and not WG related. I had no problems with the Fosamax in terms of side effects, but I'm hoping to take one more drug off my shelf. This is all assuming that my labs continue good and I can complete the pred taper to zero.) I also take a calcium supplement. Maybe your individual situation warrants the specific drugs recommended by your doc? As always, it's a balancing act of treating the disease and living with the side effects of treatment. Hope you find a solution that suits you.

[LisaD1]

my oral surgeon told me that with all the drugs like fosomax including prolia there is a risk of some kind of jaw necrosis if they have to take out a tooth so have all your dental work up to date first and very frequent cleanings and checkups...

[kaysee]

I was on fosomax for several years but my dr said I needed a vacation from it. I had no side effects taking it. However you can not eat anything for 30 minutes after you take it and you can also not lay down after you take it. I've heard that you are not supposed to take it for more that about 5 years. Now I take 1200 mg calcium and 2000 D3 each day.

[drz]

I was on fosomax for several years but my dr said I needed a vacation from it. I had no side effects taking it. However you can not eat anything for 30 minutes after you take it and you can also not lay down after you take it. I've heard that you are not supposed to take it for more that about 5 years. Now I take 1200 mg calcium and 2000 D3 each day.

I have been on it five years too and if my next bone scan looks good I might be able to try going off that med too. I take two kinds of calcium along with vitamin D

[Debbie C]

Thanks everyone for your replys. I already take 2000 iu of Vit D so I will start taking Calcium. I also took Fosomax in the beginning but the dr. took me off it.
I wish she would take me off the pred and let me go med free but she is worried I may have a flare and have to go up higher or on different meds
The insurance I have does not cover dental but I have care credit which is like taking out a loan cuz I am looking at a couple of thousand $$ for this.For that I should have them all pulled and just get dentures !
Thanks again everyone :biggrin1:

[annekat]

I was on generic Fosamax before my Wegs dx, and my current WG treating doc said I shouldn't take it for more than 5 years. So I stopped when I thought the 5 years was about up, though I didn't actually try to find out when I started taking it. I take 2000mg. of Calcium and 2000iu. of Vitamin D3 per day. That's the amount my PA suggested along with the Fosamax, after a bone density scan showed osteopenia. This was when I'm certain I had Wegs but didn't know it, and had taken pred for sinus infections, but not on a steady basis. I always felt sort of weird about the Fosamax, reading the literature about jaw necrosis and femur fractures. So I'm just as glad not to be taking it but definitely should be getting another density scan.

I did have some molars and wisdom teeth extracted after Wegs dx, while on pred and Fosamax, but it was due to infections that had been brewing for some time. The dentist and oral surgeon both knew a lot about Fosamax and said that I hadn't been on it long enough to have to stop taking it before the oral surgery. I think I told him I'd been on it about a year and a half. Haven't had any dental or jaw issues since then.

[Rini]

At 22 I am having to do bone scans and take calcium. I have even been off pred for at least a year. The time I was on the highest pred was the only time I had caveties and teeth problems. It has started up again now that I am on an inhaler (this thing seems to have sprouted cavities and a heart murmur and dose not seem worth it). I have to know what pred dose to marrow!

[annekat]

At 22 I am having to do bone scans and take calcium. I have even been off pred for at least a year. The time I was on the highest pred was the only time I had caveties and teeth problems. It has started up again now that I am on an inhaler (this thing seems to have sprouted cavities and a heart murmur and dose not seem worth it). I have to know what pred dose to marrow! What kind of inhaler are you on?