A dear friend of mine was diagnosed with GCA in January. She lives in London and is not all happy with the Consultant she is seeing as she says he is not giving her enough information. From his suggestion she has just started on cyclophosphamide as a steroid sparing agent. She is currently on 30mg pred.
Has anyone any experience with this drug, its effectiveness, side effects etc.?
Also is there is support group in the London area, as I feel that would be a good resource for her if she wants to change her doctor.
Unfortunately, as I live "across the pond" in Texas I can't be much help to her in that regard.
Thanks for any input!
Written by
Queenfisher
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There is a support group that meets in the London area, I believe about twice yearly at present. There is another group that meets just outside London, in Chertsey, Surrey, six times a year, so might be an option depending on which side of London your friend lives. Here is a link to the London group where your friend will find all details:
I'm sorry I haven't got any personal experience with Cyclophosphamide but someone did raise a query about it on another forum just a few days ago. We located one person who had taken the drug at one time in an effort to reduce his steroid dose, and although it did prove successful for him in reducing to a lower steroid dose, he said it had nasty side effects, and he was then switched to another steroid-sparing drug.
As your friend is not very happy with her rheumatologist, I can recommend an excellent one in Surrey if she doesn't mind a little journey - in fact another lady who posts here occasionally has just given up on her rheumatologist in the London area in favour of the one in Surrey and is much happier following her first appointment with him.
Many thanks for the info Celtic, I will be pleased to let her have it. Also if you could let me have the name of the Rheum in Surrey I would like to pass that on also.
Cyclophosamide ( which is a chemo therapeutic agent ) is sometimes used in large vessel Vasculitus if there is significant aortic involvement ( aneurysms or narrowings ) but it's use isn't common.
There is a Prof in London who is the UK's large vessel Vasculitis expert, he is also very personable. I can give you his name if you would like?
Queenfisher, your friend might also find it helpful to read Dr Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. It is available direct from the National Charity, PMRGCAuk, their website pmrgcauk.com. It is also available on Amazon. If she doesn't have internet connection, she can obtain it by writing to PMRGCAuk at the following address:
BM PMRGCAuk, London, WC1N 3XX, or by 'phoning 0300 999 5090 for further details.
It is used in other forms of large vessel vasculitis but as far as I am aware there is no evidence that it works n GCA. Can only echo Celtic and Keyes suggestions.
Appreciate that input PMRpro. Her GCA was confirmed by biopsy, so diagnosis is not in doubt. I am really hoping with all this info I am about to pass on to her that she will find a new rheumy and seek a second opinion.
Do give your friend the email for our London Support Group - londonpmrgcauk@gmail.com. We meet currently four times per year and she would be really welcome to come along. Our next meeting is on Monday 25 July and we meet in central London - I will give your friend all the detail if she emails me.
She can also contact the main charity helpline for information, if there's something not answered here on the forum.
Thank you so much Anne. She is not currently on the forum here, so if you could PM me a way for her to get in touch with you directly I would be pleased to pass it on to her. 😊
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