Questioning benefit of boniva

[Spanky2019]

Posted many times about gca dx that started over 2 yrs ago. Just a month into prednisone treatment a dexa showed osteoporosis- worst was right femoral neck -2.9. Just had 2 and dexa allnumbers worse. R femoral neck -3.3. Overall percentage change -8.7%. Very disappointing results for taking this poison for 2 yrs. I've had a good diet, exercise, P.T., take RX as prescribed. If I had do over I'd work harder at diet, exercise, supplements... GCA well controlled on Actemra & 4 mg prednisone. Anyone else experience similar results or good results on "bone building" rx? Any good suggestions. Really don't want to switch to another osteoporosis rx.

[Cyclone69]

Ihad osteoporosis before I developed PMR I tried to take one of the pills for it, but they made me so sick I told my doctor I wouldn't take them anymore. She put me on reclast which is an IV medicine you get once a year. I just go to my dr's office and the nurse administers it. It takes about 30 minutes. After 2 doses my osteoporosis has improved to osteopenia

[Spanky2019 in reply to Cyclone69]

Thank you. I'll check into it. That may be ine the rheumatologist talked about early in this crazy sick journey. I took Boniva iv every 3 months but obviously the osteoporosis still got worse. I'll have to consider everything including going off all rx and see how I do. Very disappointed.

[PMRpro Ambassador]

Celtic who used to post on the forum had an aunt who had been on one of the osteoporosis drugs for years and suddenly developed multiple spinal compression fractures - she had very successful surgery (either vertebroplasty or kyphoplasty but I don't know which) and was back playing tennis the following year which wasn't bad at over 80! But her consultant said to her that obviously all that bisphosphonate had been a waste of time.

The bisphosphonates don't often build bone - contrary to common perception, they should stop it getting worse. But it doesn't always. Were you checked for hyperparathyroidism? That is a not uncommon reason for continuing falling bone density. Did you get your blood calcium and vit D levels checked regularly? They are equally as important.

[Spanky2019 in reply to PMRpro]

Thank you Pmrpro. Thyroid has been checked. I've been on high doses of vit d3 and d2. Calcium intake is good. Labs are all good. I think you've always been right about the "bone meds" having very questionable benefits for most people. Talked to a pharmacist today. He said it's possible my numbers would be even worse had I not taken it. I guess anything is possible, but I think doubling down on healthy eating & proper exercise would be better plan. As always your information & counsel is invaluable. If only we'd always take it. Take care!

[SandyBoots]

Hi. Did you also have your parathyroid checked as PMRpro suggested? Not just thyroid which is measured by TSH. The parathyroid are 2 tiny little glands about the size of a grain of rice. They measure this by doing a PTH Intact test. Can cause bone loss.

[Spanky2019 in reply to SandyBoots]

Guess I don't know about that but will certainly check. Didn't realize the different testing protocols. Thank you so much. I'm so disappointed with the dexa results and would really like to find solution. Have a great day, and I will definitely check into this.

[SandyBoots]

One more thing to consider - although the Dexa Scan is very important for measuring bone density there are other tests that measure bone quality and strength which apparently are more predictive of potential fractures. I have osteopenia (very close to osteoporosis) and chose not to go on fosamax, at least not now. I do try to do weight bearing, walk with a weighted vest and take bone strength supplement Hope it is working, but don’t really know. I have strong family history of osteoporosis and taking prednisone for awhile because of PMR. Good luck - We are all on this convoluted journey together.

[Spanky2019 in reply to SandyBoots]

It sure is a journey. Guess I'll keep sojourning on the adventure with everyone because the alternative isn't very appealing.😁

[JoanJo]

Here here , Spanky2019! I totally relate to Sandyboots too. So many natural things we can do for bone density. I have severe osteoporosis and am soon due for a dexa (praying it’s downgraded to just osteoporosis, maybe next year osteopenia). I try to carry a purse or backpack for weight bearing every where I go. Lots of walking in general. Carrying a heavy water can for gardening —-back and forth — instead of hose, etc. I’ve helped my hubby move his landscaping bricks, and I’ve rescued cobbles and bricks with my step son in shopping bags (poor things were previously sentenced to landfills). Shoveling our big driveway and walkways all winter —another biggy. I’m taking Glucosamine with condroitin but not calcium supplements any more , because that added painful bone growths on my feet in 2018-19. I get calcium from food now— very mindful of that + Vit D supplements. Still taking Magnesium for cramping . This may sound crazy but I regularly massage my hubby’s back (he thinks it’s for him) whilst he works on his crosswords for building my own arm strength and bone density (and of course interjecting my 2cents worth on the crosswords)!😉. When I exercise, there has to be some purpose other than being the rat in the maze or hamster on a wheel (I hate gyms) —more power to you if you can handle those places, but I prefer pulling the weeds, or even a quiet nature hike with friends (backpack in tow, carrying all of our water bottles —just yesterday). FINALLY, we get to see our friends again — this was the first time since February 2020– what a relief!! Or I’ve been walking that new unruly neighbor dog Rosie with her grandmotherly companion well behaved mentor pit-bull Chica (my heart throb) and both of us in tandem, making Rosie “heel” —learning that the good we do for others actually benefits us too — and more than just in physical ways❤️ Looking for opportunities all the time, I guess, can actually improve bone density, is the thesis if this entry, I would say! Helping friends move — my previous nemesis, now a benefit (never thought I’d see the day😜). And the drudgery miraculously turns into a joy when we realize how happy they are too (and the next dexa is much improved). Say a prayer! Look for opportunities! Life is FULL of “excuses” for growth (bone density and otherwise 👍🏼😁).

[Spanky2019 in reply to JoanJo]

Lovely post. Lots of good suggestions, and humor, kindness and passion for life always a plus. Thank you!