Hi all
Does anyone know anything about, or have any experience of, Cyclophosponamide? It is intended to deal with vasculitis which, it is now thought, may be driving my erythromelalgia. I gather it is heavy - it is a chemotherapy drug. I know chemotherapy can induce erythromelalgia, so I am a bit worried, although of course the intention is to deal with the underlying cause, possibly vasculitis.
Any comments would be much appreciated
love to all
ajh
I haven't tried Cyclophosponamide but I have tried the less toxic alternatives methotrexate and I am currently on Azothioprine.
Cyclophosphamide has severe and life-threatening adverse effects, including acute myeloid leukemia, bladder cancer, hemorrhagic cystitis, and permanent infertility, especially at higher doses. For autoimmune diseases, doctors often substitute less-toxic methotrexate or azathioprine after an acute crisis
I get regular blood tests done for adverse side effects and after about a year of treatment my test results have all come back good so far. They haven't helped with my EM but the Azathioprine has helped significantly with my other autoimmune symptoms. Have your doctors tried a less toxic drug first?
To my understanding they will do regular blood work to catch any problems early should you have any with the medication at least they have with me. I understand your concern with taking this medicine. It sounds as if it could have some pretty serious side effects although I am sure not everyone gets them.
Are you having life threatening symptoms at present? If not , in my opinion.... remember this is just my opinion I would ask to try one of the less toxic alternatives first and if those don't help revisit the idea of Cyclphosphonamide. Like I said I am not a doctor and that is just my opinion.
Whatever you choose I hope you find something that helps. Please keep us updated to what you try and if it helps.
Take care,
Alina
I’ve never heard of Cyclophosphamide (Cytoxan) or any other form of chemo inducing EM… Cytoxan is a chemotherapy I was given about 19 years ago for Lupus, and it is a very rough treatment to go through. It was used to wipe out my immune system in order to stop it attacking my kidneys, which did work… I’ve been in a very long remission. I didn’t develop symptoms of EM til a few years ago, so I know the Cytoxan had nothing to do with mine…
Dear AJH,
wonderful news my friend!!!!!!!!!!. Im thrilled that you have finally met an aware proactive Dr.I know a little about Cyclophosphamide . Briefly, yes it is a chemotherapy drug used to treat different cancers - including breast. I wasnt given that one myself for breast cancer and mets but it is given for the breast. Very commonly given for inflammatory arthritic /connective tissue diseases. It is an alkylating cytotoxic and immunosuppressant- commonly termed as an anti rheumatic drug. It suppresses immune system so highest side effect or risk is increased susceptability to infection. Remember, many of us have a low immune system as a matter of course. Also, you may not be steriod responsive . It tends to be low dose tablets not high dose intravenous as given for Cancer- which is probably worrying you. Suppressive therapies in UK: Methotrexate, azathioprine, cyclophosphamide .I have seen methotrexate (an equivalent) work wonders so stay strong.
Attach couple things to get you started. I am happy to chat ;)
We have all been thinking of you
God bless
mads x
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