My weekly MTX dosage was increased from 10mg to 15mg and after about 4 doses I started speaking gibberish - putting completely wrong words into sentences, like "mirror" instead of "sandwich". But I myself was completely unaware of doing this!! My work colleagues and my daughter kept asking me what I meant. I also drove through 3 stop streets despite looking both ways and actually seeing cars coming towards me. Narrow misses!
Needless to say this was terrifying. (Also, I train and do presentations as part of my work - I couldn't risk not knowing what was coming out of my mouth). So I stopped the MTX and within 2 weeks or so I am (apparently - according to everyone around me) speaking normally again.
I know that there are a lot of posts on this forum about MTX brain fog and memory loss, and even a little light joking about it. But when does brain fog qualify as a really serious neurological side-effect? Call me crazy, but anything that messes with my brain is a side-effect too far.
Not sure what my next DMARD will be. Allergic to Sulfasalazine, and I think LEF has even higher risk of neurological side-effects (like peripheral neuropathy)?
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Thanks AgedCrone. Pretty sure it was mtx - tied in exactly to dosage increase and then disappeared after stopping the drugs.
I'm feeling too scared to go back to rheumy because I'm so reluctant to try any other drugs. I need to build up the courage to try another drug. If I could be the 0.01 percent to get aphasia from mtx, maybe I'll be the 0.01 percent to get irreversible macular issues with hydroxy, etc. etc. I know I'm panicking but I've never been so scared in my life. I think I'd rather face disability than dementia.
I know I must go back to the rheumy & discuss it rationally, though ....
I feel for you. I have been one of the small percentage. I had ever increasing rashes with hydroxy on and super scary reaction to Sulphasalazine after less than an hour of taking one tablet. I am scarily allergic to iodine too and just can't take any more frightening reactions. I have developed reaction to penicillin now which is annoying and am really frightened to try methotrexate which is all they will offer me. My thoughts are with you.
Hi apbrooke. Oh my goodness, I am so sorry that you have had such terrible reactions. I can totally understand you being terrified to try another DMARD. All I can suggest is that you ask to start on a low dose of methotrexate (I started on 10mg a week). The rheumy or nurse will try to convince you to start higher - apparently 17mg or so is when mtx becomes therapeutic. But there are people on this forum who are on 7.5 or 10mg and coping. At least with the low starting dose you can catch any bad side-effects soon, and they shouldn't be too bad. I was fine on 10mg. I wish I hadn't gone higher. Now I'm too scared to go back to even 10mg.
I really hope you find a safe, effective med. It sure takes courage to keep trying!!!
• Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References: healthunlocked.com/nras/pos...
Thanks Kai. Yes, I've considered drug free and/or paddison. But my sister also has RA and chose not to take any meds, keeping her inflammation controlled with diet alone. But, she is completely disabled, wheelchair-bound. So I'm afraid to go that route.
Re sleep: Yes, they say lack of sleep is one main cause of Alzheimers. Which of course just makes me more desperate/panicky when lying awake each night. I must revisit my hypnotherapist - she actually helped me before. Or I will use those meditation tracks you suggested. I often use them during the day when I need to calm down or focus!
PP does NOT advocate 'popping off' meds nor going 'med-free'. 😯
Full stop. 🛑
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Reducing or 'weaning off' meds 💉 💊 , is only done for individuals under their rheumatologist 👩⚕️ recommendation (& guidance 👨⚕️ ) after it's determined they no longer require medication.
[If you read my explanation to hope-always316 over at post, 'Stopped MTX and...' ( healthunlocked.com/nras/pos...... ), this 'on-going' process may become a bit clearer 👓 👀 .]
Perhaps it bears repeating, as this misperception has unfortunately been oft repeated 🗣 💬 🗣 💬 🗣 💬 on forums — no matter how many times it's been clarified over the year(s) 😳 😄 😆 :
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Reducing or 'weaning off' meds 💉 💊 , is ONLY done for individuals under their rheumatologist 👩⚕️ recommendation (& watchful 👀 guidance 👨⚕️ ) AFTER it's determined that it's 'safe' for them to attempt a med-reducing process.
(Incremental step 👣 by incremental step 👣 — inching 📏 along at snail's pace 🐌 . . . 🐌 . . . Backtracking if needed & inching forward if/as indicated . . . in a continuous cycle ♻️ ♻️ ♻️ . . . )
ONLY individuals for whom the reduction process 'is working' actually 'totally' wean off their particular meds because they no longer REQUIRE medication.*
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Anyone who unadvisedly 'pops off' their meds, unilaterally decides to go 'med-free', or 'weans off' meds without their rhuem's approval/ guidance, or goes too quickly, or inappropriately (incorrectly) is "NOT following PP". 😳 🤔
(This is my 'layman's' (non-science, non-medical) understanding of PP process. 😌 )
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Listening/ reading PP's actual podcasts, transcripts, text 'in context' would readily clarify 👓 this misunderstanding.
I'm very sorry 😔 you've been under a mis-impression, seneca. 🙏
* For anyone genuinely interested in understanding the actual PP med-reduction process, andyswarbs ' experience ( healthunlocked.com/nras/pos... ) is an actual, accurate point of reference (realistic, substantive) from a gentleman who's actually followed the process. 👍
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Again, kindly consider 🤔 who you're hearing 👂 'experiences' from:
👉 Experiences from horses' mouths 💬🐴 . . 💬🐴 . . 💬🐴 . . ('actual' PP-ers who understand or 'lived through'/ 'done' the actual process).
👉 Or, 2nd-, 3rd-, or 4th-hand hearsay 😏 from people who've little to no understanding of 😳 (or experience with) the actual PP process.
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Kindly take time to consider (reflect on):
. . . 🤔 What's accurate & what's inaccurate?
. . . 🤔 What's true ✔️ & what's false ✖️ ?
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Only you 😊 👈 can assess ⚖️ for yourself 'what makes sense' by listening 👂 to what's 'actually' said (in context) & rather than what someone else 'claims' was said ('out of context').**
Use your own ears 👂👂 , eyes 👁 👁 , & mind 🙇♀️ — not someone else's "misinterpretation" 🙅 , "distortion" 🤥 , "misunderstanding" 🤷♀️ .
I meant to add : thanks for sharing your neuro experiences. Always reassuring to know someone, at least, has had equally dreadful side effects. Dreadful for you, of course - I hope you have meds that are working for you now!
Yes thankfully have been on RTX infusions since April 2016, & have just arrived home from a treatment today. Feeling good with no nasty side effects except feeling really tired, but I have learned to live with that most of the time.it's amazing what you can put up,with if you aren't in pain all the time !
Do go back to your Rheumy, the longer you are without a Dmard the more harm to your joints may occur. If you have failed on3/4 Dmards & if yourbDAS score qualifies you, you may be eligible for Biologics, or Bio - Similars which seem to be suiting the people starting on those.
Please, I urge you to see your Rheumy. I understand why you're feeling scared but there's really no reason to, unless your Rheumy's an ogre. As AC has said you need to talk to him & the longer you remain off a DMARD then more inflammation will set in & then that's a start down a rocky road. I think you know really that there's no feasible reason to think you'll have any serious side effects from another DMARD but you're feeling vulnerable, that's understandable & when in that state of mind it's normal to think that way. I had similar issues with a med I was taking for neurological issues, yes, the very thing that was supposed to help did exactly the opposite!
If you feel more comfortable speak with your Rheumy nurse, but please don't just leave things as they are.
Thanks nomoreheels. Really appreciate your input and support. (You are always very calming and reassuring because of your incredible knowledge and experience of this condition!). I will discuss with the doc, but I wish there was a DMARD which didn't have any fatal side-effects like leucoencephalopathy (mtx) or sudden liver failure (LEF). At least Hydroxy only has the worst case scenario of irreversible macular damage (only!!). I really am feeling vulnerable right now and I'm a single mom to a young daughter - I need to be around for a while.
P.S. Did I infer correctly from your latest posts that you've recently had to give up LEF because of side-effects and are now only on mtx and steroids?
Thank you for your kind words Seneca. We need to sort your concerns with the rarer side effects, they're more than likely unfounded, but it's scary thinking about it. Unfortunately we don't know until we try, but they are what we need so maybe when you do see your Rheumy talk through your experience on MTX, express your concerns, he should be able to reassure you. Whilst it's good that we're able to check out options & read all about them on the internet or on forums like ours it's not so helpful when we focus on rarer side effects rather than the probable positives they can bring. We all want to be well controlled but without trying these specialist meds we're shot. We're presuming it is MTX, you've not started any other meds recently have you? Just asking to be sure we're blaming the right med!
Yes, you're correct, I've had to stop LEF. I'd been on it nearly a year & had been having neurological issues, buzzing & fizzing in my legs & a return of bilateral carpal tunnel syndrome, seems it's been labelled as peripheral neuropathy. I saw my Rheumy last week & we discussed the situation, deciding that as it didn't seem to be adding an awful lot anyway & the symptoms arising since I started it, that I'd stop it & repeat the nerve conduction studies, review those & see where we go from there. That leaves MTX as my only DMARD & I as I was on a long taper of the steroid we've decided to stop tapering for the present & see if that holds me steady. I'm prescribed other meds but they're mainly to control OA symptoms.
yep - it's definitely the mtx. No other meds. But you are so right about focusing on the positive. I can definitely refocus on the good of DMARDS again - must just get out of this pit of terror, which the forum is helping me to do (thanks everyone!!)
Sorry that LEF gave you a hard time. Sounds like you'll definitely be better off without it. The peripheral neuropathy risk is exactly why I dont' want to try it. I didn't mention it, but at the same time as the speech difficulties I got numbness and tingling down both forearms, which I think was also a kind of neuropathy because it also went away when I stopped the MTX. So I think I might be susceptible to the neurological effects.
I hope that your carpal tunnel syndrome symptoms disappear or resolve now that LEF has been removed.
Ok so it's highly likely it's MTX but you must now make steps to be seen by your Rheumy or nurse because it's been two weeks with no DMARD & you risk flaring any time from now onwards. Yes, please do make a concerted effort to focus on the positive these meds can give, again, having experienced one doesn't mean that you'll have any again, even neurological ones as they each work differently. But, & I feel maybe you won't take this the wrong way, it can become a psychosomatic issue & that's a whole other kettle of fish. For now it's a blip, you're worried but it can turn on you. For example other DMARDs rare side effects include paraesthesia but I've not experienced any out of 4 I've tried, the exception being LEF but it's a rare side effect. Am I prone to them, no I don't think so. Would it stop me trying another (if any were available for me to try), no because I'm sure it was a one off, something peculiar to LEF.
Ok, so now, positive thoughts & please contact your team for an urgent appointment, you need to move on quickly before you start flaring. x
Thanks nomoreheels. I don't take the psychosomatic ref badly - I know I can create a whole lot of things with this mind of mine! I will take a leaf from your book of bravery and get an appointment. (Already flaring) Cheers
All I can say is I haven't had any problems with Sulfasalazine. I have been on it for quite a few years now. I have to have regular blood tests, but that's all. My rheumatologist said there are side effects, but I have never had any.
Thanks Sheltielife: I was on Sulfasalazine & had a major allergic reaction. I was keen to try it again - sort of reintroduce it gradually - because it worked so well. But the rheumy insists its too dangerous. I'm so glad you are doing OK on it! All the best
Hi Seneca ~ I had trouble speaking. My thoughts would just suddenly stop. I was also having trouble remembering words. I would start to ask a question and the word just wouldn't come to mind. It frightened the heck out of me. My doctor stopped metho immediately. It's taken a week but my mind if finally back to normal again.
I haven't started my new meds yet - I wanted a clear mind first.
I totally understand your fears! I'm not looking forward to the starting my new meds either.
Snap! How absolutely dreadful for you (and I should know!). I'm glad you've recovered relatively quickly. And thank goodness the speech issues were reversible for both of us. Apparently these speech disturbances are a "very rare" side effect because mtx hardly crosses the blood-brain barrier at all, but there seem to be a good few people on this forum who mention being affected by memory loss/difficulty finding words.
If you haven't been on Sulfasalazine yet, that might be an option? It worked really well for me but then I got an allergic rash (not nearly as frightening as the mtx speech thing though)
My RA doc had never had a patient with the same problem and she has been an RA doc for years. I seem to be one of "those" kind of patients. If something weird/scary can happen - it'll happen to me.
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