Any advice on osteoporosis treatment with lymphoedema?... - LSN

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Any advice on osteoporosis treatment with lymphoedema? Prolia and cellulitis

1965Katy
1965Katy

Does anyone in this group also have osteoporosis? I have severe osteoporosis which needs to be treated (spine T-score -3.7) and could not tolerate bisphosphonates due to horrendous side effects. I have been offered twice yearly injections of Prolia (denosumab). However, one of the side effects is cellulitis in the lower leg (not the injection site which is normally the abdomen) which as I have lymphoedema is obviously a red flag for me. The only other drug I can take is Strontium Ranelate which has serious side effects. Does anyone have any experience of this or advice?

Thank you

8 Replies

Oh dear that's complicated. I have mild osteoporosis and am on alendronic acid which took me a week or two to get used to, so I am sorry you can't due to side effects. It's awful that sometimes the side effects are worse than the condition!

1965Katy
1965Katy in reply to lovesradio

Thank you for your reply. You are so fortunate to be able to tolerate alendronic acid, that's the best drug to be on.

The Royal Osteoporosis Society (I'm a member) has a very good nurse led helpline: theros.org.uk/

1965Katy
1965Katy in reply to Perido

Thank you. Yes I have spoken to them, and they say it's a very difficult decision. They suggested writing down the pros and cons of both. I have and I still can't decide!

I have severe osteoporosis diagnosed 5 years ago & have Lymphodema in my left leg. I couldn't tolerate biphosphonates either and have been treated with twice annual denosumab for the last 4 years with no problems at all. My osteoporosis has improved, but it was decided after the 3 year review to extend my treatment for a further 3 years. I'm half way through that course now and I've had no side effects and especially no cellulitis. I manage my calcium intake through diet as the calcium tablets upset my tummy too!

Hope you respond well to the treatment, and that you stay well throughout.

1965Katy
1965Katy in reply to MsDEL

Thank you for sharing your experience, that is really encouraging and helpful. You are so fortunate not to have any side effects on Prolia. I know it's a very effective drug if it agrees with you and you can take it for many years. Have you discussed with your doctor what you are you going to take when you come off it if you can't tolerate bisphosponates to prevent rebound fractures? My body seems to react so badly to drugs and I am frightened of an injection that stays in your body for 6 months. At least with Srontium Ranelate you are in control taking a sachet everyday so you can stop if it doesn't agree with you. However it can have very serious side effects. I have to make a decision, it's so difficult!

Thanks again and best wishes.

MsDEL
MsDEL in reply to 1965Katy

I had the same worries and discussed it with my GP before deciding on the denosumab. I certainly don't regret my choice. There is no plan for after denosumab because I could potentially continue with this indefinitely, though it's expected to have been effective enough by the end of this treatment. I've taken a small fall recently and no broken bone too! Denosumab has definitely been good for me 😊I hope you manage to make your decision soon.

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