I'm currently on Methotrexate and steroids for RA, thankfully thell pain has reduced by 80% and the pain I now ha e is manageable. However my problem is that my memory seems to have got worse and now I am noticing that I am saying words in conversations that have nothing to do with the sentence. Ie, I'll be talking about my dog and then I will say, I'll just get the umbrella! But meaning to say I'll just get the dog. As soon as I say it I realise I've said it wrong, but it's worrying me. The nurse at the hospital thought it might be a reaction to the RA, has anybody else experienced this. Thanks.
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Stowe
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Hi Stowe I get this now and then but tend not to worry as its only momentairily. It does make me laugh a little as I remember a friend of mine from years back that smoked weed alot and his mother sent him to the local shop for some Mars bars and he came back with a cabbage. I said to him what happened as his mother was telling him off but he insists to this day his mother asked for a cabbage when she thinks she said Mars bars. 😂
I'm now on azothioprine which is supposed to be ideal for my type of arthritis...and I'm not eligible for biologics without coming off steroids which I can't because of my bone marrow problems.
If you are looking for alternatives a good place to look is the NRAS website treatment pages.
Yes, I had the crazy-words side effect. Officially known as aphasia. Was told by my rheumatologist its an extremely rare side effect, but I think quite a few people get it. For me, it was much too scary, and also impacted on my work as I am a trainer and couldn't afford to be talking rubbish to my trainees. So I went off methotrexate and it immediately stopped. Lots of people seem to take the MTX brain fog and mixed-up words in their stride, and even have a laugh. But for me it just wasn't acceptable that uncontrollable things were happening to my brain!! (I am a panicky type, though...)
Hi Seneca, thank you for your reply, I'm trying to laugh it off, but to be honest it's worrying me as it's happening too much, and I feel like my speech is out of my control, also I speak to alot of people on the phone in my job, so not good to be talking rubbish! I have an appointment with the nurse in nurse, I'll ask her what my options are. X
I don't take mtx anymore but last week in the supermarket I said we needed some honey, my hubby was looking at me in amazement. I really wanted olive oil. I have no idea where the honey came from.
All the time Stowe, I'm on MTX too, and Leflunomide and Pred and morphine. OH keeps saying I have dmentia, but I just ignore him. lol
Welcome to the club. Unfortunately RA is one of those conditions which is known to cause Brain Fog, as are some of the treatments. I'm constantly getting my words mixed up or forgetting them completely. I've been in mid conversation with one of the various consultants or specialist nurses that I see and I'll just dry up and completely lose track of the conversation. It's not just that I can't remember what I was going to say, I can't even remember what the conversation was about. My GP even sent me to be investigated at the local NHS Memory Clinic. The good news is that after the brain scan and the session with the Psychiatrist they decided that I don't have dementia.....yet. It used to embarrass me, now I just laugh it off. The funny thing is that I've noticed that my friends don't seem to notice my little gaffes. The only conclusion I can draw from that is that they've obviously never really listened to a word I've said, how very disappointing....I think.
Hi Mickam, good to hear that your ok, and had the all clear with the tests. I think that's the thing with RA there's so many things that start yo crop up that you realise is all part of the condition. I don't think most people mind when I stop talking and totally forget what I was saying or totally say the wrong thing mid sentence, but it is embarrassing at work, especially when I'm on the phone to a customer!
I thought MTX brain fog was a well known side effect; RA nurse mentioned it to me. I found it utterly depressing. The good news is if you come off it, it disappears, I can remember things again & don’t lose my words etc x
I think it could be welcome to the world of mthotrexate
Yes, totally get that. sometimes it feels that i am pulling words from a far away place. It's quite strange, but i have got used to it. I am worse the 2 days after methotrexate, i don't sleep well after it and i think that adds to the word find.
Ohh all the time at work I say bizarre words or stand there going I will remember the word in the moment -they now get that part of me and just working round it. Apparently I say 'gin' a lot when I cant think of right word that one of the younger team members thought I had an issue with gin! Made me laugh, it my fill in word to help me focus!
Hi Stowe, are you experiencing any other side effects? I started losing words, plain, simple everyday words, my husband said having a conversation with me was like playing charades!! Around the same time I became very tired, a different tiredness from my usual episodes of fatigue. I was worried that I had early onset Alzheimer’s. Long story short, I had very low B12. After a course of B12 injections I went back to my normal, which included my occasionally forgetting words along with forgetting what I went into a room for 😂
Oh gosh it's a good they checked your B12 levels, I bet you feel much better now. I say the wrong words, forget mid sentence what i was saying, have days whe I'm exhausted, Friday I even had to have 2 coffees which i haven't done for ages. Always seem to be trying to remember a word, which annoying pops into my head ages later and cannot remember TV programmes to talk about at work, I have really wrack my brain to remember what the programme was about 😣. I'm seeing the nurse on the 6th Aug I'lll mention it to her and see if she can add B12 to the list whe I have my next blood test. Thanks for that. Have a nice evening. X
I did find taking methotrexate did affect my cognition. This was down to the fact I wasn’t talking my folic acid at all. Now that I have been talking my folic acid everything is back to normal. Can I check if you are taking your folic acid?
Thanks for your reply, yes I'm taking Folic Acid, my consultant was very clear that I had to take that at the same time. Most of the time it's fine, but now and then I say the wrong things what's worse not realising what I've said and others correct, that and the poor memory. I think I'll mention it all to the nurse. Thanks.
Methotrexate may be more toxic when someone has MTHFR enzyme defects. Which is very common in autoimmune diseases. Also supplementing with high dose synthetic folic acid instead of methylfolate can cause more issues even in those without MTHFR enzyme deficiency .
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