Cyclophosphamide: Has anyone been on... - LUPUS UK

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Cyclophosphamide

diane46 profile image
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Has anyone been on Cyclophosphamide how was it

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diane46 profile image
diane46
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traceyxpx profile image
traceyxpx

Hi Diane. I started on cyclophosphamide in December due to my lupus causing secondary cerebral vasculitis. I have had three intravenous treatments and due to get another in February. So far not had many side effects just a little bit of nausea but it effects everyone differently, also my hair has thinned a little but not too bad x

diane46 profile image
diane46 in reply to traceyxpx

Thank you its my next step hope itso ok

Barbs51 profile image
Barbs51

Hi Diane, I had 6 intravenous cyclophosphamide therapy early 2017, one every 4 weeks for my ILD lung condition which is secondary to my sjogrens and I did feel rough some sessions but nothing really awful. I didn't suffer with nausea I was given a drug to take to offset it. I didn't have any problems with thinning hair even though the consultant said I would. It did the trick and my breathing improved. All the best wishes for your treatment 🌺

diane46 profile image
diane46 in reply to Barbs51

Thank you its my next step on steroids at the moment hope it's OK

traceyxpx profile image
traceyxpx in reply to diane46

Good luck, I have managed to get from 60mg of steroids down to 10mg in the last three months x

Buffy14 profile image
Buffy14

I had a 3 month course and had no issues although following advice from someone else who had had it I insisted they give me anti sickness drug prior to treatment , they ask you to try it without the anti sickness drug first so that they can see how it affects you , the girl I spoke to who was in the bed next to me in hospital said she was terribly sick after her first dose without the anti sickness drug but fine after the other doses with the antisickness drug taken first . It can cause some hair loss if you take more than 4 treatments but this is different for everyone some people don't get any hair loss at all . They give you a large tablet to take prior to the infusion which is to counter any possible side effects . Good luck with it and I hope it works for your symptoms x

Cyclophosphamide some report side effect but till now no of them appears so go to take it

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