IV Pamidronate infusion

[Monika]

I was just wondering if anyone in the community has had an IV Pamidronate infusion for scleroderma. I am supposed to,be having one at the end of May and I am not sure what the side effects are and, also, if it has been beneficial for anyone with Sclerodema.,I was told it may help the calcinosis by taking the calcium out of the blood and putting it back into the bones. So I would be grateful for any feedback.

[franky1965]

Hi monika ive never heard of that drug my husband had an ilopost infusion before for his raynauds & scleroderma but he really needs some better treatment  he just waiting to see professor herrick  please could you let us know how you get on good luck hunx

[rosella24]

Surely Pamidronate is used to treat osteoporosis, not scleroderma?

[Monika in reply to rosella24]

Yes that is what I thought so I think I need to try and speak to my doctor before I go ahead with this . Thanks for replying X 

[rosella24]

I've been having Iloprost infusions for scleroderma for nyma years, but have been diagnosed with osteoporosis and will be starting an infusion for that soon. I'm a little concerned about side effects, but fingers crossed! Wishing you lots of good luck with it all x

[Monika]

Thank you for your reply and good luck with the infusion - hoping the side effects aren't too bad. Still can't decide whether to go ahead with it so am going to have a chat with my doctor xx

[LucyJean in reply to Monika]

Hi Monika,  Pamidronate is an IV infusion for osteoporosis.  It is what they call a bisphosphonate drug.  I have had scleroderma for a long time, and I have a lot of calcinosis in my hands and never in all my years of having it or of working in Rheumatology have I heard of using it for anything other than osteoporosis.  Calcinosis is not caused by too much calcium, and it is not linked with osteoporosis.  It is a specific feature associated with Limited Systemic Sclerosis (one of the version of scleroderma).  I really would have  lengthy chat with your medical team about why you are having it and side effects. 

Hope you get on ok and all my best

Lucy

[Monika]

Thank you Lucy for your reply - it has been really helpful and I will definitely get some answers before I have the infusion. I am not aware that I have osteoporosis although the last bone scan did say I was borderline so maybe that is why they recommended the infusion and not for the scleroderma.  Thank you again and all the  best to you  X