I was diagnosed with EGPA about 5 years ago. I have been on Methotrexate since then and on and off low doses of Prednisolone. I have hardly had any symptoms . However in February this year I was diagnosed with womb cancer, I had a hysterectomy which be re moved the cancer and chemo and radiotherapy. I am now completely clear of cancer.
I was taken off Methotrexate in April before my operation and have not taken it since. I am still recovering from the treatment for cancer but so far have had no sign of EGPA. I realise that the chemo I had was much stronger that Methotrexate which is a form of chemo.
Has anyone had a similar experience and does the EGPA reappear?
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Farnorth
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Hi Farnorth. I'm aware that some people with vasculitis can manage to get off all maintenance drugs and remain in remission. However it is possible the chemo may still be having and impact on your immune. I'm guessing you are having regular bloods which would tell you how well your white cells are doing.
I do wonder whether taking these immunosuppression drugs does put you at greater risk of cancers taking hold. I have been on Mycophenolate for nine years for my MPA when I was diagnosed with prostate cancer. I was kept on Mycophenolate throughout my treatment but so far that hasn't included chemo. Are their any plans to restart the Methotrexate?
Hi thank you for replying, at thr moment their are no plans t0 go back on Methotrexate . My consultant wants to see if the EGPA returns, if it does he said that he would look at other medications for me.
Hi, I can’t comment directly because I’ve been on low dose steroids for many years, and azathioprine too, which I am just gradually reducing to hopefully stop taking. Reasoning for taking me off the aza is because I’ve had bowel cancer and now Bowens disease which is a skin cancer. Like you I really worry about the EGPA recurring, it’s a balancing act between drug side effects and the management of the EGPA. And the doctors don’t seem to be able to predict what will happen, this illness is very individual. I hope all goes well with you.
Hi Farnorth, I wish you a swift recovery.I don't have EGPA, nor have I had methotrexate. I have GPA and early on I was on mycophenolate as immune suppressant. This was switched to Rituximab sometime later. I think your post raises the dilemma of immune suppressants to keep the condition at bay vs increased risk of cancer due to suppressed antibodies. I was told by the Renal Consultant that to carry on with the Mycophenolate any longer than necessary was to increase the risk.
Time has gone by since this and following 2 relapses since diagnosis in 2016 I am still struggling with the dilemma ref Rituximab as the suppressant. During the pandemic I was unable to have the Rituximab for 2 years and I had a relapse May 2022. I am still trying to manage the after effects of this.
From my own opinion I think it's a matter of weighing up the potential harms following a relapse (based on personal experience) regarding the condition and also the treatment to get back in remission vs the potential likelihood (or otherwise) of getting cancer. A rock and a hard place. From my point I am having the Rituximab for the moment but it's still an uneasy choice.
My husband John was diagnosed with stage 4 prostate cancer in November 2016. He was taken off the methotrexate immediately.
He had been having oral cyclophosphamide for 5 years and MMF for 9 years previously and only been raking methotrexate for 3 months. John had intensive Radiotherapy and Hormone Therapy for the prostate cancer. He was not restarted on the methotrexate. We always lived in fear his GPA would relapse as John always had a positive ANCA even in clinical remission. He also suffered a stroke in 2018 which we immediately thought was the vasculitis but after a lumber puncture and scan, it was revealed John had suffered a pons stroke, not associated with his vasculitis.
I believe John’s cancer came on quickly ( with hardly any symptoms ) and aggressively because he had been severely immune suppressed for over 15 years, he always said himself, “I have no immunity to mop up the rogue cancer cells”.
So I agree with the other replies. If you can wean off the immune suppressants without flares or relapses then that’s a good thing but it is definitely a fine balance.
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