Experience of minocycline?

[LadyTrundle]

The Royal Free consultant has suggested I go on minocycline for 3 months, to reduce the size of some calcinosis lumps.

Has anyone had experience of this? Effectiveness? Side effects? How best to take? Dos and don’ts while taking it?

Thanks. It was the first I had heard of a drug doing anything against calcinosis.

[ArthurFoot]

No like you no one has ever offered me anything for my calcinosis however I did really interested to know if it works. Good luck x

[SunnyD1]

Hello,

I took minocycline at the end of the year but realized I didn't actually receive a full course for 3 months. I'm waiting to hear from my consultant if I should start a new course of the drug.

I can certainly say that having not been on it, the inflammation in my hands and calcinosis is returning. I would say for some reason it helped my right hand more than my left but perhaps that's because my left is dominant. I had googled quite a bit about the drug and felt worried as there are lots of stories about a case where someone went blind and headaches. There are side effects with every drug an we might not get any of them. I still wonder what it does to us over time but at the same time feel the calcinosis takes over so if the drug does work then that would be good. All the best with your decision.

[LadyTrundle in reply to SunnyD1]

Thank you SunnyD1 - that's useful experience and also reassuring. I'm still weighing up but currently thinking 'yes'... but only after my holiday!