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.

[Support_helps]

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 Support_helps]

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

[hollyandivy]

I am sorry for your side effects, this must be very distressing. I am also on prednisolone and methotrexate and the latter is now 20 mg which causes me numerous side effects including mouth ulcers and trembling legs plus the usual stomach problems. I am terrified of face and feet swelling. I was advised to take the injections but stomach problems persist. My Rheumatologist has frequently been persuading me to see a Specialist Rheumatologist whom I am seeing on Wednesday to confirm to me that the treatment I am receiving is appropriate. I have just had a pacemaker fitted to cope with Atrial Fibrillation so also take blood thinners and statins and a paralysed vocal cord which may have been caused by the vasculitis. I believe the Methotrexate has so many side effects it is worrying to be taking it. I hope you received some satisfactory answers from your Rheumatologist,

[Wyllow in reply to hollyandivy]

Hi hollyandivy, thank you for your message. I’m sorry for your side effects too. And you having to have a pacemaker, and your paralysed vocal cord, and other issues, Vasculitis is a horrible disease and all the meds seem to add more to cope with even though we need them. My rheumatologist assured me the methotrexate is not causing my memory problems, he said it may be stress related as I also don’t sleep very well and having to cope with the illness and the meds is very hard as there doesn’t seem to be an end in sight. I hope you get some further help from your specialist rheumatologist appointment, please post how you get on. Good luck with getting some answers