Romosozumab Update: Severe Joint Pain

[Gjohnso]

Hi. I received my first shot 10 days ago. I was already in pain from vertebrae fractures and mild arthritis. Now, my left hip hurts so much I can barely walk. It’s starting to affect my right hip. Back dr thought this might be nerve pain so He gave me a steroid shot in my left hip on Thursday. I have experienced no pain relief from it. Gonna call the Rheumetology dr on Monday. I’m taking 800 milligrams of ibuprofen every 6 hours and it barely touches the pain. I am so disappointed. I really want this to work. I am recovering from 4 vertebrae fractures in the last 3 months.

[Met00]

So sorry to hear you're having such a painful side effect. Are you in the US? I don't think romosozumab is available in the UK yet.

[Gjohnso in reply to Met00]

Yes. I’m in Florida. Thank you. Do you take anything? How do you handle your osteoporosis?

[Met00 in reply to Gjohnso]

I'm fortunate in not having had any fragility fractures and might feel differently if I had. I tried bisphosphonates (Alendronic Acid, then Risedronate for a year), but gave up due to side effects, so for the past 4 years have been going down the "natural" route - healthy diet. supplements and exercise. Diet: plenty of fruit, veg, seeds and nuts, high in protein, calcium and magnesium, low sugar, caffeine and alcohol. Supplements: high dose Vit D3 to maintain my blood level over 100nmol/litre (that's 40ng/ml), Vit K2-MK7, boron, Vit C and zinc, plus a little magnesium when my stomach will tolerate it; and I drink Volvic water, which has a high silica content. Exercise: not done so well with that recently, but aim to brisk walk a couple of miles 4-5 times a week (often wearing a weighted vest for this), heel drops, dancing around the house, jumping, skipping, hopping, balance exercises, and using weights and resistance bands 3-4 times a week. I had a REMS ultrasound scan (new technology) a couple of months ago, t-scores were both -2.6 and I was told no need to take meds (just as well, as I wasn't planning to anyway!). But I can't really tell whether my regime is helping as my previous scan was with DEXA and my spine reading wasn't correct, don't know about the hip one. I'll find out in a couple of years when I go back for a repeat REMS scan.

[Hidden in reply to Gjohnso]

I had 4 vertebral fractures 4 years ago. Tried Alendronate, then Risedronate before completing 3 infusions of Zoledronate (I'm in UK). My fractures should surely have healed by now, but I'm in agony, even with Fentanyl patches and Oramorph . I hope you find some relief soon.

I also have RA and OA. 😢

[HeronNS]

Oh dear, joint pain is listed as a side effect, in fact first on the list I saw, so I think your doctor was being optimistic that it had a different cause. I wonder if this is a transient effect which may improve with time even if you continue with the treatment? "They" may not know yet as it's a very new drug. If matters do not improve it is worth reporting your reaction to whichever agency keeps track of things like this. In the meantime, fingers crossed that you feel better soon.

[pteyze]

I had the same hip problem after my second shot of prolix. It was awful! That was a year ago. Am so sorry I ever started with that drug. Decided to just get off of it and any other one that they wanted to put me on. It was a hard year, but now the pain isn’t so back. Am keeping up exercises and calcium.