Has anyone experienced sleeping for 12hrs plus after ... - NRAS

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Has anyone experienced sleeping for 12hrs plus after taking MTX. Tilda T I now know what you mean with terrible taste in mouth.

emn66 profile image
11 Replies

Like gone off cheddar. Im'e at end of 4th week.

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emn66
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Beth58 profile image
Beth58

Hi

I never had this problem with MTX however, I do regularly stay in bed for 12 hrs often waking with pain or when turning, but that's after a couple of Tramadol/Amytriptyline washed down with a glass of red. Check your other pain meds it might be them causing the over sleeping. xx

emn66 profile image
emn66 in reply to Beth58

Love the sound of the pain relief.

allanah profile image
allanah

I Did go through this stage and my Rheumies put it down to fatigue due to my very active RA. But he did check my iron levels too. also my painkillers on top of that made me sleep. But I actually was grateful for the rest and it did ease up when the RA got better controlled. I would call the helpline and ask them for advice if it doesn't improve though to make sure its due to the RA?! And yet the weird taste in your mouth isn't good, I rely on pastille a and mouthwashes! But for me when I was on mt8 it was a small price to pay!

Love Axxx

earthwitch profile image
earthwitch

On one of the other message boards I'm on, there have been quite a few folk who have said that they don't feel good the day after MTX and can be quite tired, so I'd say it was fairly usual. Do you take your MTX on a day that you can just crash out afterwards? If not, it might be worth changing the day you take it.

Hi Em - sorry you are suffering so. I've actually had a few days off dreadful taste in my mouth and it's mood changing - life changing even when it goes away!

I know what Allanah means - but I think that it's a high price to pay actually because having a foul taste in your mouth for me is as bad as RA pain - it makes me feel smelly and disgusting and affects my moods whereas pain gives me something to focus on at least - even when it has my joints playing at fractured and I cant walk etc. So for me - if this taste thing continued 24/7 as it was I would have had to ask to come off MTX even though it's working very well for the RA pain and swelling and in injectable form it's brought down my ESR levels significantly. I have always had pain somewhere or other in my body so maybe I've just adapted to expect it but nobody who has not experienced a vile taste 24/7 can tell me that it's bearable - same goes for nausea! For me life isn't worth living if you feel poisoned and revolting or very sick all the time.

The good news about my horrible sewer mouth is that I think I might have got to the bottom of it and now it's got much better. I think it's nuts - and especially pine nuts - which seem to interact with the MTX so that within about 5 minutes of injecting myself this vile bitter rancid taste fills my mouth (yes like old rotten cheese!) . I sussed this out about 2 years ago when I had a foul taste that lasted 3 weeks and arrived at the same time as the RA pain. I worked out that I had eaten pine nuts with pesto on pasta just before it started and read somewhere about this condition called "Pine Mouth". This time I seemed to have forgotten and added some pin nuts to my nutty gluten free breakfast cereal - also had some on a salad I was given in a cafe. I still think the MTX is responsible - but as with alcohol some foods maybe increase the toxicity to give this foul taste? It makes you feel as if you'd been poisoned - especially when the RA is bad too. When all this started I found myself looking for fillings that had come lose, foods that might contain mercury etc?

You may want to consider moving to injections if it's making you feel dreadful Em? For some this improves things a lot and mostly I've been in that category although some weeks I do still get really wiped out the next day, but then the MTX is more rapidly absorbed and more effective so although I'm only on 15mg it's more like taking 20mg in terms of the effectiveness and maybe in terms of fatigue also. I couldn't take even as many as 7 tablets - I got really run down and sick 24/7 so comparatively the injectable MTX is fabulous!

Side effects do also change/ lessen as your body gets used to the drug so hang in there Em - MTX does wonders for many people, including me, and hopefully you'll be one of them soon too. Tilda x

emn66 profile image
emn66 in reply to

I am already injecting. I also feel the most dreadful nausea and hope to get something for this. When i feel like giving up my wife reminds me just how bad I was before MTX. This is strange. I also suffer from kidney stones and have had several bouts. I cannot remember how painful any of the bouts were just the same as I cannot remember shuffling across the floor in extreme pain with RA.

Thanks em

helixhelix profile image
helixhelix

I've always found that MTX knocks me out for about 16 hours... I take it at night and go to sleep fairly soon after but find that I need to stay in bed an extra hour or so the following day or I'm useless. When I took it during the day I ended up with a crashing headache about 2 hours later and feeling foul for at least a day, so this way I seem to sleep thought he worst of it. But apart from that it's also been great at controlling my RA so I've just learnt to deal with it. And I don't have foul taste, which might have changed my mind.... Polly

emn66 profile image
emn66 in reply to helixhelix

I agree about the control. As I mentioned elsewhere one tends to forget how bad it was before. I should not moan.

emn

It's a balancing act between side effects of meds and the disease itself isn't it? Pain itself would not for me be a reason to take these particular drugs but the fear of joint damage and disability when I'm older is. I mean I can remember screaming into my pillow with pain in my wrists and fingers in February clearly, but as with giving birth it wouldn't put me off having more kids or put me onto drugs in itself - its the fear of the consequences that help me make all these decisions.

justlizz profile image
justlizz

I also find that cant do much over weekend take 17.5 mtx the only downside I hate is cant face coffee for 2 days so I have been drinking tea but I am now finding tea tastes bad as well I do have the sicky feel all weekend but i do have anti sickness tabs that help if it gets too bad

lizz

Harpey profile image
Harpey

I often don't get out of bed until the afternoon on Saturdays after taking MTX on Friday pm - sometimes I think it's also a build up after a tough week of work.

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