Biphosphonates Questions

[Pamk1949]

I’m on my second go-around for GCA. I had GCA/PMR in 2017. After almost 5 years and tapering VERY slowly got off of prednisone for about year when the GCA came back suddenly, but without PMR. Currently at 2mg prednisone from 60 , and Actemra every other week. Just tapered to 2 mg quickly (one year) maybe because I’ve had GCA before?

Now for the Biphosphonates question. In 2018 I was encouraged by HeronNS’s advice about rebuilding bone naturally—calcium, D3, K2, exercise with weighted vest, and calcium diet. The 2021 DEXA went from spine (2.5 to 2.0) and hip (1.4 to 1.3) but femur (2.0 to 2.5). Heron’s advice really worked!!!!! (Thanks, HeronNs!!).

However during the last year prednisone took its toll again and this 2023 DEXA was (spine 2.5 and hip 2.7). Since I am down to a really low dose of pred, do you think I could get my numbers down again? I’m 73 now, and my rheumatologist wants me on Boniva immediately. I do have trust in this new rheumatologist , but would like other’s opinions. My fear is having a weaker spine with Biphosphonates and thus fractures. I’m reading lots of books too, but don’t see Dexa numbers matched with starting medicine. Are my numbers really bad?

Would love to hear your honest opinions…

[PMRpro Ambassador]

More likely because you are on Actemra - it replaces the pred, only thing that does, but even it is not 100% successful.

Both your dexa scores are in the osteoporosis range, It is common for spine to be a bit worse than others but the hip score is the one they worry about since that predisposes you to a fractured hip, the fracture dreaded by any doctor working with the elderly - which I fear we are!

[Pamk1949 in reply to PMRpro]

Thanks, PMRpro! My thoughts were to get the DEXA #’s higher since presdnisone is almost out of the way, and I’ve done it before. Maybe femurs are harder to build bone because they’re larger?

[PMRpro Ambassador in reply to Pamk1949]

You can try to improve them with exercise and supplements - HeronNS did it and wrote her story here

healthunlocked.com/pmrgcauk...

but she wasn't quite into osteoporosis territory. It is worth the try but will it happen quickly enough to protect you?

[HeronNS in reply to Pamk1949]

Just to follow up, my t-score improved in one year. I've never had another DXAscan, would have had one just around the time we entered the pandemic, and all things considered I haven't felt it necessary to seek one at the moment. But I was encouraged by those initial results.

Also I'm currently having dental work done and one thing the dentist I saw the other day said, after they did a 3D scan of the area where the work needs to be done, was that the bone looked healthy. I was a bit worried because my front lower teeth have wandered a bit with aging, but apparently that's just one of the joys to expect if one gets old enough. The result of the exam is that I'm to have a tooth extracted and an implant placed during the same appointment which I am sure would not be the case if the bone was in any way compromised. That was mostly what he questioned me about, whether I'd taken bisphosphonates.

I should add my age, now 76.

[Pamk1949 in reply to HeronNS]

Thanks, Heron. I started with your advice for several years—-weighted vests, exercise, daily yoga, calcium, etc. and I had results!!! Thanks for that! However this last year of GCA relapse set me back for all my gains. Not sure what to do now —researching what I can about rebuilding bones after osteoporosis diagnosis. Maybe I can take the medication for just one year, then do all other things as well then re-evaluate.

I’m experiencing the same thing you are right now. I have a 60 year old root canal (broke my front tooth when I was 10) that just became infected. It’s still healing, but the dentist said it would have been a problem if I were taking Biphosphonates. And if it doesn’t heal then I’ll need an implant.

Hope all goes well with your implant. I’ve heard good things about those. Thanks again for your reply

[HeronNS in reply to Pamk1949]

My front tooth has a story which has become a trilogy. The baby tooth decayed so it was extracted when I was five. The adult tooth grew in a little crooked and looked like it had a chip out of it, but that's just how it grew. A snaggletooth. Then over twenty years ago I was out for a walk and as I went to cross a street it was like my sneaker was stuck, the toe obviously caught by some invisible flaw in the asphalt, and I went flying down. Smashed my face on the road, got a mouthful of asphalt, and broke two teeth, one of which, good old snaggletooth, was displaced. The dentist put it back in place and once the trauma was over I had a root canal and reconstruction. The third volume of the trilogy is my body decided to resorb the tooth, so it has to come out or it will break, and be replaced! Dentist said if that weren't happening the tooth would likely have lasted as long as I needed it!

As for your own situation, obviously the choice to take a bisphosphonate must be yours, but can you get the known dental needs taken care of first? And carry on doing all the good things which helped before and see how it goes. Doing that can only help, not hurt and might well mean you really won't need more than a year or two of medication for the OP, so you'll get the most benefit from the drug without entering into the territory where it becomes more problematic.

[Pamk1949 in reply to HeronNS]

wow that really is a trilogy. Your body thought the snagletooth was your baby tooth? Well, looks like the story will have a good ending. Yes, my plan just might be that—take meds for 1 year and keep walking with that vest! I have a young golden retriever who loves these walks anyway.

[HeronNS in reply to Pamk1949]

No, it was a "dead" tooth, so I guess sometimes this happens. The baby tooth was volume one. The broken adult tooth with root canal volume two, the currrent adventure of artificial replacement volume three (to be continued in late August, concluded whenever the titanium implant is secure).

Enjoy your dog walks!

[winebag]

Sounds like you are doing everything right. Some of it happens with age. Weaning off of meds is important. Enjoy life!!