chemo

[BellaSarge]

I was diagnosed last fall with limited GPA (in my ears). Was on methotrexate and low dose prednisone until a few weeks ago. Diagnosed with breast cancer in may so taken off the methotrexate when I started chemo last week. One of my chemo drugs is cytoxan. My question is, has anyone else had this type experience and what did it do to your auto immune disease to be on a chemo dose? I’m hoping it will put it into remission!

[Grizzly-bear]

sorry to hear about your breast cancer diagnosis, I hope chemo does the job for you!

You’ll find many people here who have been treated with Cytoxan (you’ll likely see it called cyclophosphamide) for their vasculitis, so being taken off Methotrexate will hopefully not have a negative impact on your autoimmune disease

Best of luck with your treatment

[Investigator1]

Hi Bella. As GB says it’s quite common but effective I had 4 blasts of Cyclophosphamide to bring things under control (should have had 6 but cut short due to Covid but was lied to - another story for another day) and it did the trick. The side effects wear t too bad to be honest just felt a bit crap for a couple of days. Good luck. Nick.

[BellaSarge in reply to Investigator1]

Thanks to both of you! How long does it take for the cytoxan to kick in? I’ve had one dose and get one every 3 weeks. And so far you are correct - side effects haven’t been too bad.

[Investigator1]

Hi Bella, I can only go on my own experience but I had the treatment every 4 weeks and blood done in between but was taking Prednisolone so here is my Record: PS I was diagnosed in December 2019 with an ANCA marker of >177

Dose 1 - December 23rd 2019 - Bloods 9th Jan - ANCA Marker 149 - Pred 60mg

Dose 2 - January 20th 2020 - Bloods 3rd Feb - ANCA Marker 129 - Pred 60mg

Dose 3 - Feb 17th 2020 -Bloods 3rd March - ANCA Marker 109 - Pred 40mg

Dose 4 -15th March 2020 - Bloods 30th March ANCA Marker 72 Pred 20mg

Then Covid came upon us and treatment suspended and put onto Azathioprine at end of April. On the 4th of June my ANCA marker had dropped to 40. However by August it started rising again to 53, then September 57, October 64 and November started Rituximab. Currently I am heading into my last dose of Rituximab and my marker is around 5.

My Consultant was furious when she found out I had been taken off Cyclophosphamide in her absence, the Professor who did my consultation that day lied to me telling me it was nothing to do with Covid, we would have suspended it anyway because I was deemed to be in remission. This was not the case.

I had to increase my steroids in August 2020 back up to 30mg but by July the following year I was steroid free. To be honest Bella my side affects with the steroids were worse. The only time I had some bad side effects was on Christmas Day 2019 2 days after my first Cyclophosphamide but I think over indulgence with a bottle of brandy may have contributed.

Hope this gives you some idea

Nick

[ijeasike]

Hello BellaSargeI am so sorry you have to deal with breast cancer too. I was on mycophenolate mofetil (CellCept) then my lupus got worse and my kidneys were failing, so I had to be put on cyclophosphomide for 6month. It helped my kidney side of things. Nonetheless, I developed issues with my knees, skin and fingers. So I put on Azothiaprine, and later methotrexate. They didn't work for me so I was put on biological treatment Belimimab once every 4 weeks and that has been controlling my lupus.

I pray the cyclophosphomide helps you too. Xx

[michichgo]

Hi Bella, Very sorry to read about your cancer diagnosis. I hope your treatment and recovery go as smoothly as possible.

I was on Cyclo for about 6 months (exact timeframe is a bit fuzzy) when I was initially diagnosed with MPA in 2013. I tolerated it fairly well, which is more than I can say for the high dose Prednisone. It brought me into remission so I'm quite thankful for it.

Wishing you improved health.

Michele