MXT, nightmares and immune system?: Hi again, I have... - NRAS

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MXT, nightmares and immune system?

22 Replies

Hi again,

I have noticed since my MXT dose has gone upto 25mg that on the same night I take it I have a terrible nightmare, the horrible sort you have to drag yourself out of sleep to stop it, thought it may be anxiety causing it as I know I will wake up feeling yuk or is it the meds, anyone else with this?

Also, have been feeling a bit better recently util I woke up this morning with sore throat and runny nose and now inflammation and pain suddenly worse, my question is, if the MXT works by dampening down the immune system and I now have a 'bug' of some sort, does that mean the immune system become stronger trying to fight it off therefore making me feel worse?

I hope that maks sense!

Cheers :)

22 Replies
Gina_K profile image
Gina_K

Hi Wiliby,

You should probably stop mtx until any infection clears up, to give your immune system a chance to respond. I'm not sure but I think problems with your immune system and these meds only occur after many years of treatment. I might be wrong.

Ring your doc and ask advise if you are new to these meds.

xxx

yes should stop methotrexate with infecctions unless you have recieved diff advice from rheum team..havent heard of nightmares.. possiblt some other med you are taking? causing this or anxiety? x

emandedmum profile image
emandedmum

Boo, hope you feel better soon x I often get sore throats and feel generally unwell usually a couple of days after my mtx injection, it tends to last only a couple of days and yes my joints get worse when I feel ill so I think there must be a link between white blood cells increasing to try and fight these bugs and joints becoming stiff and achy :( If you're no better tomorrow I'd give gp/ra nurse a call just to ask what to do re mtx, I've always been told to keep taking it but as mine is injection it may be diff with pills so worth double checking. Take care xx

Need to check that your neutraphils are still adequate if you have methotexate maybe as when they are down you can be more prone to infections ?? Do you know your blood count at the minute? x

Hi Williby - I used to have terrible dreams not so long ago, I thought it was the meds, but I also think it is linked to anxiety. Since I had the aura of calmness descend upon me, I find that I am sleeping better and not so dreamy, also I have switched the co-dydramol to paracetamol in the day time because co-dyramol makes me feel yuk.

Having just got over a sore throat, and having what appeared to be baby flare, (slightly puffy knees and swollen knuckles and fingers) I believe it was my immune system, where it had sprung into action to fight off the sore throat, thus making my limbs ache - gee talk about taking the rough with the smooth.

Personally I would not stop taking the MTX unless it was desperate and I would check with my doc first. It's themTX which is making me better

Take care

Julie xx

.

LavendarLady profile image
LavendarLady

I was told by my GP to stop both the MTX and the anti TNF if I had sore throat, cold, chest infection etc etc. On the leaflet for Enbrel, it does say to stop taking it if you have an infection. I was also told my immune system long since waved the white flag and went away. With RA your immune system is that which is attacking you and causing all the problems. the low immune system is the reason why we all go down with sore throats and the rest. I had to stay away from my little grandchildren when they got chicken pox (although I had it as a child) because of the effect it can have on MTX. At present, sneezing a lot, feeling a bit like a cold coming on except it doesn't develop. Don't know if it is hayfever or not. (I must admit I don't always do what my GP says! - I often keep taking the MTX etc even with a bit of a fever and cold - I'd rather not be in the sort of pain which put me in a wheelchair 3 years ago!). LavendarLady

in reply toLavendarLady

Yep, agree with all this...I think you have to weigh up how bad is the throat,cold, against the consequences of not taking the RA med. I suppose a full blow chest infection might be different.

Julie x

Kaz13A profile image
Kaz13A in reply toLavendarLady

After taking the MTX have you been able to not use a wheel chair, I've just taken my first lot of tablets yesterday had dreadful night mare last night and a knee that I've had terrible with is in agony today again !

Mel_ profile image
Mel_

Ditto above....Some conflicting advice re illness and MTX, so always best to get it checked out with your DR, you need to follow the advice your consultant gave you when he/she first issued the drug. My GP thinks it should be stopped when poorly but consultant said to continue!!!!

Re nightmares - there is a lot of evidence that points to MTX being the cause of nightmares; however this should only last for a short(ish) period while your body gets used to the drug (how long have you been on it?) sudden withdrawal of MTX can lead to the same problems. Night terrors happen within the first hour or so of sleep before REM (rapid eye movement - sorry don't mean to teach you how to suck eggs!) starts, nightmares happen during REM and at this point the body is unable to respond making it hard for you to wake up (some peaple even experiance trying to wake up but the body is paralysed so can not move; very scary) the double impact is that it is also recognised that people with a chronic illness have a increased chance of nightmares due to stress levels - sorry!

If they (nightmares) continue you must let someone know as this could lead to sleep apnea and we of all people need our beauty sleep.

Just read that all back and think maybe I should not have answered the question as it does not make for very happy reading, sorry.

Sweet dreams :)

Mel

in reply toMel_

was wondering what your work back ground is mel?

do you have some medical training?

Alison

Mel_ profile image
Mel_ in reply to

Hi Alison,

No, no medical training. Just when something happens to me or someone close to me, I like to have a good read up on it to know what I'm dealing with (know your enemy!) My father was a scienctist dealing in medical reasearch so grew up with him telling me all sorts of interesting facts and my mother is amazing and can analysis hand writing and dreams so both have given me a lot of insight over the years. Alas none of the clever genes rubbed off on me though. :)

in reply toMel_

gosh how interesting! if only your mum could see my handwriting!. or even read it !

be careful with internet sites some arent medically accredited and some can have slightly misleading advice,, my original background was research.. using electron microscopes and xray diffraction machines.. etc

best regards

Alison

nhs///.. shire advice is to stop for a week re infection( methotrexate) but as shire isnt in the big league on ra go with your local advice

cathie profile image
cathie

This is more a contribution-mini blog t han an answer.

Nightmares and RA.

I dreamt the other night that I was sitting on the edge of the circle in a theatre. with my legs dangling down. I couldnt concentrate on the play/concert because I kept thinking what would I do to get up. And looking down at the deep drop below!

I'm learning to paint and think I'd better do a painting of this to get it out of my system!

And I dont know whether it was a methotrexate night, but it was early in the week, and I tend to take mtx on a sunday night, so maybe it is relevant to your question.

Sorry for the delay in replying and for it being a short one (stiffy hands!)

Thanks to all for the advice given, doc told me to continue with meds but think fighting a bug is making it flare up a bit, rather a cold than stopping meds and going full flare..... not so bad now though, think is getting better :)

Mel, I suffer from night terrors as well but have done for many years, they are also worse since starting meds, not nice at all but I didn't know nightmares could lead to sleep apnea, yikes!

Sparkle, my bloods are fine I think, no sign of change there but i'll check anyhow :)

Thanks again everyone xx

ciyoung profile image
ciyoung

I sometimes have hallucinations when I've just fallen asleep which wake and scare me- only in last few years, reading this blog I'm starting to think maybe a MXT link? Will investigate further x

ciyoung profile image
ciyoung in reply tociyoung

was meant to add they are always around the start of the week which is why there maybe a link as I take MXT on Monday night x

in reply tociyoung

yes, have that exactly, hallucinations but have had that for years (before RA), attended a sleep clinic and they put it down to a type of epilepsy but now they last longer, I even spoke to 'them' the other night as it was there for so long :) I should of realised a 7 foot Budda wasn't real :)

ooh wiliby Im getting concerned seeing things.. is a tad worrying?// had an an aquaitance who thought god had spoken to her?? and told her to change her name from sue to sharon.... we have a special hospital for hearing voices!!and seeing things in the ...shire

hope you are joking?.. I had a real friend who had been taking" anxiety tabs" for years

from well to do family.. with a family Dr friend!.

.Any way when working in retail pharmacy.. sat morns!! getting ready for work she rang me!!. alarm bells rang..told her to see me at work.. she didnt live far from that phamacy.. the upshot was she had suddenly stopped taking the "anti anxiety" tablets trigging a major illness psychosis/ mania.. She had to be persauded to go to the local mental health hospital as an inpatient for nearly 3 months to stabilise..she had stopped the tablets suddenly because she decided to try for a baby with tragic consequences. now 2-3 years later she is really well Im so pleased.. her husband used to ring me late at night most nights as I tried to support them both through a very difficult time!

caroline777 profile image
caroline777

Hi Wiliby

I get terrible nightmares - recurring paranormal type ones where i am levitating and things are flying round the room. When I try to scream I can't but my husband says I shout and cry in my sleep. Very scary and frightened to go to sleep again. It only started with RA and meds and I think it is a combination of everything as it often starts with weird things happening to my hands which are very hot and painful at night. They were actually smoking in my dream a couple of night ago.

Fear of the future, pain, medication and anxiety all add up to a strain on the brain and dreams are your brains way of releasing it all - or so i have been told!! Rather go without the nightmares though!

Good luck and sweet dreams.

Caroline

xxxx

Blessed profile image
Blessed

I too have nightmares - I am on Cimzia and I scream and shout out whilst asleep - always upset and angry - but when I wake I do not remember a thing - at all Nothing. My husband tells me I shout so loud sometimes - the neighbours must hear. I have mentioned this to the RA team at the hospital but they say they are not aware of any connection to RA drugs.

Harimah profile image
Harimah

I take Mtxte too for RA and though it's not known exactly how it works it is classed as an immunosuppressant, You mustn't take it if your prescribed anti-biotics because it stops them from working ,...25mg is quite a high dose... 20mg is the usual dosage so it's quite possible it is the cause of your nightmares problem,....I was taking 30mg at one point and had to cut back to 2omg because I felt terrible all the time, Tired, nauseous and breathless then because of an infection was taken off them while taking anti-biotics I didn;t take Mtxt for 2 weeks and felt so much better that I didn't want to take them again,....I'm now taking Etoricoxib and Prednisilone and feel almost my old self again no tiredness or nausea and the awful breathlessness has cleared up, I'd have a word with your Doc if I was you

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