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.
Methotrexate and Prednisolone GPA: Hi everyone... - Vasculitis UK
Methotrexate and Prednisolone GPA
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!
Thanks for your reply Atimlin, best wishes
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.
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.
Thanks eh66, my appointment is this afternoon. I’ll ask again, I feel like I really need to come off the methotrexate and pred
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.
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.
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
I started with Azathioprine as I have previously had breast cancer so they didn’t want anything that would increase the cancer risk. Had anaphylactic reaction to Asathioprine within 2 months. Now on Mycophenolate and had one half of a Rituximab. And 3 x Prednisolone so I’ve never been so heavy!(
Hi Candy-rojo, I hope you have fully recovered from your breast cancer, sounds like you’ve been through a lot having GPA too. I had to stop taking the Azathioprine 2 weeks ago, apart from making me feel more unwell than usual it started making me violently sick an hour after taking it. Still on methotrexate and prednisolone as well as all the other meds. My ANCA levels are going up each time I see my rheumatologist. I was on Mycophenolate for the first two years of GPA treatment, it brought my ANCA levels down but then started causing stomach issues. I put on a lot of weight that I can’t lose. Not sure what my rheumatologist will suggest when I see him again in a few weeks. It seems most people are treated with Rituximab but I’ve never been offered it. Don’t want to go back on the Mycophenolate but I hope it works for you 🤞
Thanks for sharing your story, Wyllow. Interesting as I find the Mycophenolate very harsh on my stomach. I’m on the max dose but the 15mg steroids/day have really made me fat. I wasn’t slim before but my weight has almost doubled which has affected my mobility: I have compression of my sciatic nerve in my second last vertebra and NOTHING touches that pain. I’ve moved back to Ireland after living in the UK for 25 years but I needed to have family around me as I felt alone despite having some good friends in the UK: I found that if I cancelled seeing a friend due to a sinusitis-style headache (the root of my granulomatosis) they maybe thought I didn’t want to meet them.
So I’m two weeks back in Ireland and just can’t believe how exhausted I am. Don’t know if it’s from the Rituximab or steroid-induced diabetes (definite impaired sensations in my feet). For now my parents are being very supportive and caring; my Dad is such a worrier: if he doesn’t see me improving/getting off my ass a bit more each day I know things will get more strained between us.
Lovely to make your acquaintance though! 😀
I’m glad to hear your family are being supportive, GPA is difficult as it’s so rare, most people (including family) I try to explain it to don’t understand as they have never heard of it, neither had I until I was diagnosed! I hope being back with your family helps, I don’t know if it’s the illness or the meds but I feel exhausted all the time too, I really need to exercise more too but have little spare time, when at home just need to rest to get through the next day. Your sciatic nerve pain must make things even tougher. I hope things improve for you. Lovely to make your acquaintance too, take care 🙂
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,
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
If it’s of any consolation I have had GPA since 2013, and relapsed twice when my steroids went to 5mgs, just this August my last relapse and just starting to recover......I'm also on Methotrexate for the past 5 years and like you on a variety of other drugs for side effects.
I happy to remain on a minimum of 8mgs steroids, it stops all the unnecessary back and forwards to the Rheumatologist.
I also had PAN when I was 21yrs, and in full remission after 5yrs, I'm currently 62yrs and started with GPA at 51yrs.
Hi philtw, thank you for your message, I’m glad you are starting to recover from your relapse.
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