Anyone else got experience with Cyclophosphamide?

[Karen34]

Hi all, I am starting Rituximab soon and then got told today that I will be given Cyclophosphamide as well. I was handed a leaflet that mentioned extreme nausea and hairloss, but I don't know if this is just if you are on really high doses for cancer, so I was just wondering what side effects other people had on this drug? Many thanks.

[annie330]

Hi Karen

If you don't mind me asking please would you share your symptoms.

I had one course (3 pulses) of cyclo back in oct/nov 2009. I was then put on Rituximab in jan 2010. I have had 3 lots of in total now and was told that I would be given it annually as a maintenance. However now they have said they want to give me Rituximab and cyclo together, but they will only give 2 pulses of cyclo and I will have to stop my azathioprine for 2 months before hand.

They have says that they will give Rituximab on day one, cyclo in day two, Rituximab on day 14 and cyclo on day 15.

They have said it is my choice and to be honest I don't know.

To answer your questions the cyclo made me feel really tired but the Rituximab has the same affect. I didn't have any nausea, they gave me a tablet (I think) to help with that, I didn't have any hair loss whilst on the cyclo but then in June 2010 I did. This was when I started warfarin and I thought it was related to that but when I went back to hospital in Sept 2010 for 2nd lot of Rituximab they asked about hair loss and explained it is a lupus thing.

Where abouts are you, just trying to gage if the cyclo and Rituximab together is a new protocol or related to the hospitals we go to. I am in Leeds.

Louise

[Karen34]

Hi there Annie,

Thanks for your reply. I have got the usual Lupus symptoms of joint pain, tiredness, rashes, ulcers, headaches etc, but my red and white cells are being badly attacked, causing major health problems. I am on steroids and hydroxychloroquine, but couldnt tolerate methotrexate or azothiaprine and cellcept didnt work.

I had prepared myself re starting the Rituximab but when the nurses were booking me a date for it in the diary, after my apt with the consultant today, they handed me a small leaflet on Cyclophosphamide and said I would be having this at the same time. Therefore I wasnt really given a chance to discuss this with my doctor, to ask why I was having it/why at the same time/what the side effects were etc.

I am due to start both on the 20th Feb, then have the same again 2 weeks later. I am treated at St George's Hospital in London, under general Rheumatology. It is strange that your IV's were spread out - which really seems to make more sense - but mine are all at once, I will query this when I go there.

Best wishes to you,

Karen x

[Kentish_Man]

I had 6 months of Cyclophosphamide infusions, but it did not work for me. They tried several other meds on me after that and I am now on Mycophenolate and that seems to be doing the job.

Cyclophosphamide does not work for everyone and the side effects also differ per person.

Good luck and I hope it works for you.

[Maureenpearl]

I had three course of Cyclophosphamide between October and December 2011

I also had a steroid infusion the day before the Cyclphosphamide infusion and a tablet a few hours before and after the Chemo to prevent it damaging my kidneys. It did affect my hair but it did not fall out entirely just went thin and the ends damaged. I was always very tired, cold and felt very weak for a few days after the infusion.

I had this treatment because the lupus has damaged my lungs and I am always vomiting so every medication that I was given just did not work.

Since January I have been breathing a lot better I am not as breathless.

[MandaM]

I was diagnosed with SLE and renal failure in March 2000 and given 5 months dose of cyclophosphamide to supress my immune system down to keep my kidneys going for awhile longer. I had a little sickness but thats all and carried on working throughout. my kidneys kept going for 5 years after that until i needed dialysis and a subsequent very successfull transplant in 2006. I have had no positive or out of normal range blood results for SLE since, so that's now 12 years remission. :0)

[Paty]

I've been on oral cyclophosphamide for almost 8 years,luckily with no side effects.I take a weekly dose alongside daily prednisolone,I have my up and down days but more up days since commencing it. I have had my SLE over 10 years and still finding new things about it. Good luck