York Support Group

[RichardE]

We’ve booked Huntington Memorial Hall as usual, for Sunday the 13th of October between 2:30pm and 5:00pm.

The hall is just off the A1237, to the north of York city centre. The address is 46 Strensall Road, Huntington, York, YO32 9SH.

Our speaker for this meeting will be Lucy Turner, a hepatology research fellow from York hospital. Lucy will talk about her research into methotrexate and liver disease. Tea / coffee and biscuits will be available with plenty of time to chat to other people with vasculitis.

Please let me know if you are coming so we can plan the refreshments.

Email [e-mail]

[PattyMPA]

Hi Richard. I am in the U.S. so won't be coming to the event. About Methotexate: I was on Methotrexate about 3 months. It caused serious gastric distress - reflux so we switched to the injectable form. I was doing better with that and the Prednisone high dose. But then was suddenly stricken with a tiny cough and high fever. The first Urgent Care visit and x ray showed nothing but a day and a half later I was back in due to higher fever and feeling weak. My oxygen level was dangerously low so they sent me in an ambulance with a critical care nurse the 1 mile to the hospital. They did CT scan and my lungs were almost completely clogged with swollen blood vessels. They would not treat me with corticosteroids until they were sure there was no infection (determined by pumping me full of super high doses of antibiotics and doing a Bronchoscopy to get a sample). That 5th day my oxygen plummeted even while being constantly on oxygen. And my heart went into Atrial Fibrillation so I am permanently on bloid thinner and a heart regulator. So they upped the oxygen to spare me a breathing machine, and they began the steroids = to 500 mg of Prednisone a day.

I was able to leave on the 8th day. I went home on an even higher dose of Prednisone than I had at the beginning, and was totally off of it about a year later. Then I also began my semi annual infusions of Rituximab, which did put me into remission by the 2nd time. Praise God! But no more Methotrexate as it may have caused this. Or the P ANCA MPO Microscopic Polyangiitis may have caused it.

Methotrexate can very rarely cause pneumonitis which is very similar to what this looked like. It seemed like it worked well and is a great help to the majority, and we aren't sure which thing caused this but I am grateful to be alive.

[RichardE Volunteer in reply to PattyMPA]

Hi Patty,

Sorry to hear about your experience and experience with Methotrexate but great that Rituximab finally got you into remission. I know many people who've also had Rituximab with great success.

Unfortunately I think pretty much all the different drugs we might be prescribed can occaisionally cause problems for a handful of people. As you say, many people do very well on Methotrexate but others may not get on with it and switch to different immunosuppressants. Something I always try to point out to our members; there are always options and alternatives, it's always worth talking to your doctor.

I understand that the speaker we have our meeting has a gastro background, so it will certainly be interesting to hear what she has to say about the pros and cons of Methotrexate. If it's OK with her, I'll try to put her presentation up on our website and will post an update here if so - yorkshirevasculitis.org.uk

All the best,

Richard.