Cyclophosamide

[Relative]

Anyone else here get put on cyclophosamide ( chemotherapy) for severe GCA? My relative was put on high steroids, which didn’t help, then tried methotrexate which didn’t work and had terrible side affects. And is now , about a year into GCA with steroids ( slightly lower but still quite high), plus cyclophosamide. She goes in once a month to get the chemotherapy iv - is supposed to get it for 6 months. No one else seems to have mentioned this... so I was curious. She is in the UK (which seems to be behind US patients in getting the biologic drug actemra).

If anyone else has experience with this drug- please tell me. I update her on all the relevant things I read.

She has GCA and PMR. Thanks

[Hidden]

Hi

It’s an interesting option & l wonder if there are any more patients being offered this?

The reason l say Interesting is because l had FEC/T Chemo for Breast Cancer & my Rheumatologist, Surgeon & Oncologist all thought it may wipe out the PMR - it did put it into Remission (l was still on a Reducing Dose of Prednisolone) but within 10months it was making its presence felt again!

Cyclophosphamide is the ‘C’ in FEC/T

Regards

MrsN

[Whatgrange in reply to Hidden]

I got my PMR diagnosis 2/3 months before the Ovarian Cancer diagnosis. The thought was that the cancer was driving the PMR and that PMR would end when the cancer was removed. The surgery and prognosis was very good. I pottered along on 12mg, gradually reducing and everyone really forgot about PMR including my excellent GP. I choose not to have oncology follow up. Until about 4mg! When I flared and eventually ended up at 20mg! now on gradual reduction at 14. Definitely not symptom free!

I had one 2 hour chemo session but had such appalling side effects that I decided no more!! However I honk my progression, Mrs Nails, seems similar to yours?

💐💐💐💐

[Whatgrange in reply to Whatgrange]

‘Think’!!!!!!

[Hidden in reply to Whatgrange]

Hi Whatgrange

It certainly seems as if Chemo gives PMR a hit on the head, like it does to the rest of your body.

I’m sorry your Chemo was so hard on you, it’s certainly not for the faint hearted.

Hope you are doing well now.

Kind Regards

MrsN

[PMRpro Ambassador]

Cyclophosphamide IS used for certain other forms of vasculitis so maybe it is one of the steps on the way to getting approval for tocilizumab in the UK?

journals.sagepub.com/doi/fu...

is an interesting read. It is from the Dublin group who have tried other IL-6 agents - and they feel the biologic path is still inadequately explored to use them for new patients, which is a normal attitude for new drugs. They are used second or even third line to get more experience before they are approved for first line use.

"The fact that the pathogenesis [how it is caused] is both complex and incompletely understood has played a role in the limitations of current treatment options. Our emerging understanding of the pathogenesis of GCA will hopefully enhance the treatment approach in this disease. ... Emerging data for other biologic agents, particularly abatacept and ustekinumab, are also encouraging but less well advanced. We are at the dawn of a new era in GCA treatment, but uncertainties and opportunities abound."

explains the basic problem: until you know HOW it happens you can't work out how to stop it in its tracks.