Boniva with side effects or something else?

[Spanky2019]

Need opinions about continuing Boniva i.v. every 3 months. Started Sept 2019. I've had 3 tx so far. No vertebral fractures but dexa shows clearly osteoporosis dx. Severe, intermittent back pain after 1st tx but wasn't sure from boniva b/c on high dose prednisone since last April due to giant cell arteritis. Also, just started actemra 2 months ago for gca and am now down from 80 mg prednisone to 10 mg. Anyway, after 2nd boniva tx in Dec back pain clearly connected to tx. 3rd tx in March, once again back pain much worse and also now have arm pain.. It starts a couple days after i.v. and lasts 2 to 2-1/2 months. Just get to feeling better and time for another tx. Rheumatologist wants to switch to Reclast which is an injection that's only done once per year. My back/arm pain is pain level 4 to 7. It's miserable but I can function. A tx that lasts 1 year - Reclast seems like bad idea. What if I have worse symptoms and they last a year? I also have esophageal dysmotility & other gastro issues so can't take pills. Please advise, opinions, what's worked didn't work for you. With so many so sick & worse, seems trivial to be concerned about this. But just exploring options and others experience. Thank you!

[Met00]

When you say your DEXA clearly shows osteoporosis, would you be happy to share what your spine and hip t-scores were and, if you haven't fractured, why you were sent for a DEXA scan? I know that stereoids can cause loss of bone density, so realise it may be due to being on those. Were you also told your fracture risk (eg 10% risk of fracture in the next 10 years)? I can certainly understand your concern about potential side effects of a once a year injection, although it doesn't necessarily follow that you'll have the same issues with that as you've been having with your monthly infusion. Clearly with being unable to take pills, your options are likely to be limited to injections/infusions or no medication at all, although there is a soluble (effervescent) bisphosphonate (taken weekly I think) you could ask about, but obviously it still goes through the digestive system, so may not be suitable.

[Spanky2019 in reply to Met00]

Hi, thank you for reply. Diagnosed with giant cell arteritis in late April 2019 and was on high dose prednisone 80 mg, 60 mg, couple of flares back to 80... for several months. Had dexa scan one month after starting prednisone so osteo there b/4 steroid use. Spine is good with t score -0.4 I do have disc bulgesL2-L5 and S1, some stenosis inL4. L5 & S1. Right femoral neck t-score is -2.9 and Left is t- score -2.6. FRAX 10 year Probability of Fracture: Any major fracture 39.3%. Hip fracture 7.5%. I have lost 2 1/2 inches. I am now 4' almost 8 inches. Also lost 38 lbs while sick with gca. I was very strong and active but too chubby. Prednisone didn't show it's weight gain properties on me until December. Ive gained about 5 of the 38 lbs I lost without trying. Now have kind of chubby cheeks but Actemra I believe is creating a pregnant looking belly and I dont eat very much. Minimal carbs and able to walk now. Still weakness in legs from prednisone but that's much better. The back and arm pain is tolerable, and don't want to get into something that gives me nausea or vomiting... Often wonder if going off all and see how I do would be a good strategy. Thank you for giving your time on this. Hope you are safe in this new crazy world of ours.

[Sunseaandsand]

Hi, I had Boniva a good number of years ago for a period of 3 years.

I had many side effects whilst having the treatment,some of which took some time to realize it was the treatment which was giving me the side effects.

Some of the side effects became quite serious.

I never experienced pain in my arms or severe pain in my back as side effects.

However I have read through what you have written and notice you have problems with the discs and stenosis.

I too had those problems in my back (and now have more plus 4 spinal fractures) and whilst on the treatment I had 2 severe episodes of back pain that resulted in my being taken to A and E.

After my 2nd and 3rd fracture I was given Boniva again I only had 2 injections 3 months apart and suffered miserably with side effects so it was stopped .

I too am awaiting a yearly injection like yourself of Reclast.

In fact I was due to have my lst injection between Xmas and New year last year but owing to other health issues I put it on hold.

Of course everything is on hold for everyone now because of the terrible time we are experiencing.

I hope you and your loved ones are well and safe and this is of help to you.

Personally I do not tolerate medications and treatments well.

I do feel though it is worth trying Reclast as it is a different treatment and does seem to come with less side effects than the Boniva.

Take care and keep safe.

[Gjohnso]

Hi. I’m so sorry for your pain. I can talk about prednisone. I had been on high doses for many years because of Crohn’s Disease. I never had back or joint pain because of it. I recently switched to Remicade for Crohn’s and have been off Prednisone for about 2 weeks.

I take Romosozumab for osteoporosis. I’ve had 5 vertebrae fractures since October - and only one of them was after my first dose on February 14. I have had no side effects from it so far - and no more fractures so far.

[Spanky2019 in reply to Gjohnso]

Thank you. Every bit of info helps. Stay safe.