Methotrexate and Prednisolone GPA

[Wyllow]

Hi everyone. I have been on methotrexate and prednisolone for nearly three years for Vasculitis GPA along with blood thinners and statins etc, was also on Mycophenolate for first 2 years. I have been told Rituximab not suitable for me. GPA symptoms are currently under control, have not been able to get below 5mg of pred without symptoms coming back. Recently I am having a hard time at work, making mistakes and working very slowly. I have read methotrexate and prednisolone both have cognitive side effects after long term use. Has anyone else had this experience and recovered from brain fog? I have an appointment next week with my rheumatologist and will discuss then. I’m getting quite scared as have 7 years before I can retire. Thanks in advance for any advice.

[Atimlin_1]

hello I'm only 2 months into vasculitis treatment (Rituximab/High dose steroids) starting with 50mg Prednisolone now down to 15mg daily. So I'm afraid I can't offer any long term experience for you. I will say that my brain fog has completely disappeared and I haven't been as sharp in years but I think that may be more due to my decision to stop alcohol and sleep better. I'm sure you'll get some more relevant inputs from others. Best wishes!

[Wyllow in reply to Atimlin_1]

Thanks for your reply Atimlin, best wishes

[oldtimer2]

I have been on intermittent steroids, then long term since 2006. The only time that I had problems with brain fog was for the relatively short period that I was on methotrexate - it was one of the problems that I had (including large mouth ulcers, overactive gut, and vomiting). My family though that I had early onset demetia, but it recovered gradually once off the methotrexate and I got back to writing and lecturing.

Hope that helps.

[Wyllow in reply to oldtimer2]

Thank you for your reply, I’m glad you have been able to get back to writing and lecturing

[eh66]

I had 7 days in hospital and a kidney biopsy. I was given 2* cyclophosphamide and rituximab plus high dose preds in about 3 months, followed by two years of rituximab. I now classed as in remission, and just on statins and a couple of other things for long term maintenance. Working well and getting plenty of exercise. I would ask him why you aren't suitable for rituximab.

[Wyllow]

Thanks eh66, my appointment is this afternoon. I’ll ask again, I feel like I really need to come off the methotrexate and pred

[Astroid]

I feel you. I've been on these med for almost 2 years (from the age 19 to 21). Used to feel dizzy and numb especially after consuming methotrexate. Prednisolone gave a hard time for my bones as I still have urges to take calcium suppliments. I have never been on pots, but I often wonder why I feel so, when I was on these medicines. By time drugs were slowly being addictive. I had encountered difficult times with withdrawal symptoms. There was a point I felt life is incomplete without them. Later I realised these might have been the cognitive disruptions I had.

[Wyllow in reply to Astroid]

Thanks for your reply Astroid, best wishes

[Varp]

Hope your appointment went well.I too am on pred and methotrexate, 6 years plus! Down to 5mg pred daily but any lower and a flare begins.

[Wyllow in reply to Varp]

Thanks Varp. I’ve been told to take 4mg of prednisolone daily but also to introduce low dose Azathioprine, dreading to see if I get side effects from that, best wishes