Illness back after toxic reaction to methotrexate

Illness back after toxic reaction to methotrexate

Looks like my immune system is out for revenge after me attempting to control it with methotrexate. I've gone from being poisoned by the drug to now being in a full blown flare. I had a chat with my immune system last night.

"Why are you doing this to me"

"Coz you tried to whack us with metho"

But it hurts, everywhere. And my hands and feet are awful"

" good. Teach not to mess with the IS guys"

"You wait till I get into azathioprine. That'll sort you"

"You reckon?"

"I hope so"

"Then just try it punk. If you feel lucky."

At which point I regained my sanity and order was resumed.

I had hoped to stay off strong opiates. Just cocodamol or paracetamol. And I am in agony. See doc on Tuesday. I'm not sure if I can put up with this pain till then. It seems that not only has the illness come back but the rebound neuropathy has too. My hands and feet feel like I've got burning broken glass under or in them. The rest of my body feels like I've been hit by a bus. I'm giddy, confused, forgetful, nauseous and my sleep patterns (after just getting back to normal) are all over the place again. 3 hours in the night and no doubt I'll need to go up for a nap soon. I hate this bloody illness. Only started when I came off pred after being on15-20mg for 18 years. That apparently is why all the pain nerves fire in my hands and feet making them an 8-9 on the pain scale of 1-10. It's almost unbearable.

So I've only had it a year but it's awful. Not diagnosed yet but chief suspect CFS.

My adrenal cortex is shot so i have to take hydrocortisone tablets for adrenal support.

This is not fun. In the last 3 weeks I've done cold turkey off morphine as I was fed up with feeling like a zombie. Just got over that, got the toxic reaction to methotrexate. That laid me up until Friday. Then I felt this flare starting. So it means back on zombie tablets again. Until I get the azathioprine. So immune system. "I can't quite remember how many shots I've fired. Maybe 4 maybe 5 maybe 6. I didn't count. But what you've gotta ask yourself immune system is "do I feel lucky? Go ahead punk make my day."


Now it's me hoping azathioprine will stop the pain.

This is how I look and feel this morning.

14 Replies

  • Not a good luck. Hope your system is switched back to more normal asap. You ahd done so well to come off the morphine this is such a knock back for you. I think the nerve pain is the pits as there seems nothing that really eases it long term without feeling like you are from another planet.

    I know Tuesday seems a long way away but try and hold on there. I know my friend has just come off Methotrexate she has terrible skin problems as she could write of the night she took it and the following day and she just felt that the side effects over time were getting worse rather than better yet her sister in law who has RA can get away with half a tablet and rarely has any side effects. It is so difficult to know how our bodies will react to drugs. It looks as though mine hates antidepressants I have tried two and felt so ill had to stop withint 2 weeks and then three for the last one I was hoping they might help with the lower back pain and sleep.

    Let us know how you get on on Tuesday. Hope you get a better night.x

  • With methotrexate I had a severe toxic reaction. I've had to have lft fbc Us and Es plus a load of other tests which I haven't heard of. I was ill for a week. I've been told never to take it again. Now the bloody disease is flaring. I think it's my immune system telling me "don't try and modify us, punk"

    It's still at the stage where my feet only hurt when I'm standing or walking. And my hands when I'm doing something But it will get to the point when both my hands sand feet are agony all the time. I can't sleep I can't get comfortable. It's not slight background pain that you can get to sleep with. This is full blown agony. The only way I can ever get to sleep is take about 6-8 nytol tabs. You end up so stoned you fall asleep. I obviously do not recommend this at is overdosing. But when you're so tired that you just want sleep I think you get to the point where

    You just say. "So what. It can't get any worse". Morphine 60mgMR is all that keeps it at bay. But I have to start at 30mg. Which cuts the pain a little but not all of it. Only good thing about 30 mg is it doesn't give me dementia symptoms, which 60mg does.

  • I know the feeling about sleep I have always been a very light sleeper but now it is awful. I do have some sleeping tablets but I know the doctor is not keen so I tend to take one a week just to try and get a few hours but I find now that I seem to be terrible the next day. I can commiserate with the pain as last night I was either pacing the floor or popped up in bed with pillows all around me trying every distraction technique I could use to try and dampen the pain. Of course the more tired we are the worse it is the next day.

    No some of these tests they do aren't easily understandable I wish they would give us a crib sheet so we knew what everything meant.

    it is a fine line with the meds isn't it to have a dose that takes the bad edge off the pain without making us feel like we should be an extra in a Zombie moview.x

  • You're right.

    You do feel like something out of a zombie movie.

    My doc gave me zolpidem 10mg. The first two nights they were perfect. I went to bed at 11 pm Put me into a lovely relaxing sleep within 15 minutes. It normally takes me 2 hours to get to sleep. I would only wake once in the night. About 4:30-5:00. Which was perfect to take my morning dose of hydrocortisone, then I'd drop back off and wake feeling wonderful at about 7-7:30. Then I got the reaction to methotrexate

    Now I might as well be taking smarties. Coz they just don't do anything that's one thing I do like about morphine. You take 2 tabs a day one at 9 in the morning one at nine at night. When it gets to 11 you get into bed and are out like a light. If the 30mg can hold enough of the pain off then I'll stick with them. But as the tolerance becomes greater I have to move up to 60 mg. that's when the dementia symptoms kick in. Mind you I think my doctor put me up to 60mg too quickly. After only one week. Perhaps I should have gone on to 3 weeks at 30 to build up tolerance and my mind might not have got so bad.

  • Yes I think it is best to slowly build up a drug. My old doctor knowing how intolerant I could be to many drugs he had tried in the past would always start me on the lowest dose and gradually build up. The only times he didn't do this I found the side effects bad.x

  • When I used azathioprine last time they tried starting me on the full dose. It gave me splitting headaches and bad nausea. So they tried building up from a low dose and perfect. No problems at all.

  • What anti depressants were you on? I'm ok with amitryptiline or SSRIs but SNRIs like venlafaxine I get terrible brain zaps and spasms with. That's why I can't take tramadol. As it's basically venlafaxine with an opioid nailed on the side.

    I'm on fluoxetine (Prozac) at the mo but have not been on it for long enough for it to take effect yet. Only been on it a. Fortnight. Normally takes at least four weeks to do anything for me. But they do help. Diazepam helps too. But I want to come off of those. But I never have any problems with benzodiazepines. I don't get withdrawal or any craving after I stop so I guess I just don't get addicted to them. I want to be on as few psychoactive drugs as poss. As I'm rather fond of my brain the way it is. The only way I like to change the way it works is with beer. Lol

  • I tried Mirtazapine first and I started to have very strange thoughts especially at night and then started to have a funny feeling across my chest as though I had pressure there all the time quite weird and frightening. My friend said it was rather like the feeling she had with her angina.

    I then tried Citalopam and spent a week on the loo and lost 5 lbs. I then started to feel zombie like and had a 24/7 headache so that to had to be ditched. I would have tried another type even though the doctor thought I was one of those people that antidepressants just don't suit but hve the house up for sale so needed the brain to be firing on all cylinders, well as many as I can gather at one time.

    Yes I don't mind a glass or two of vino. Used to love lager but as soon as i went on one med it now tastes like I imagine ditchwater does such a pity as there is nothing to beat it on a hot summer's day not that we have had many of those.x

  • The only SSRI that ever really works with me is good old Prozac (fluoxetine). Never had any probs with that.

  • Join the gang my immune system is shot 3 days in Papworth Hospital and I caught everything, if I do need a lung transplant I hope they will get there act together.

    By the Peter55 nice to see Iron Maidens "Eddy" looks just like me in the mornings

  • Maiden. The best. Full stop.

    My immune system isn't shot. Exactly the opposite. As long as I'm not on DMARDS or steroids it just attacks me coz it's bored.

    I'm obviously prone to auto immune diseases as I have had ulcerative colitis, but after using azathioprine for 6 months I never had another flare. I recently had a colonoscopy and there's no evidence that I ever had colitis. Not just that it had gone.

    That gave me a nice little side gift of rheumatoid and osteo arthritis.

    Now what appears to be an auto immune disease after being taken off prednisolone. So my immune system seems too strong or sensitive.

    Hope all goes well for you.



  • I am so genuinely sorry to read that and I can imagine it must be hell for you? I sincerely hope that you start to feel better soon. Please take care of yourself.

    All my hopes and dreams for you


  • Thanks ken

    Pain levels far less today. Still ache, but it's that nice ache that when you move to a different position in bed in feels marvellous. Perhaps my body is getting used to only being on 30mg of hydrocortisone instead of 20mg of pred there's a 4-1 difference in anti inflammatory power so effectively I'm only taking 3/8 of my pred dose. But the flare seems to be coming under control without any help. If it is then that's wonderful. If it was never actually a flare but the end of the toxic reaction to methotrexate, then I won't be so happy. But I felt fine on Thursday so I think that the toxins were out then. Plus the aches and pain were definitely not part of the toxic reaction. So I definitely think it was a flare but I feel so much better today it's incredible. Either that or the fact that I'm now on HC my own adrenals have started to work again and are dampening the illness down. I had a great nights sleep albeit with 2 nytol tablets. Was asleep by 11 woke once at 5 which is actually ideal coz it allows me to take my morning dose of HC at the same time as it in naturally starting to be made for the morning peak at about 10 o'clock. Then took a diazepam which help me to get back to sleep and I've only just woken up.

    None of the above works if I'm in full flare like I felt I was yesterday.

    Could hardly move, severe pains in hands and feet. Giddy, no appetite, real bad aching everywhere, mind all over the place. You name it, it hurt. Head ache all day which co codamal would not shift. Sore glands and sore throat. And incredibly tired but I could only sleep in the daytime. According to health those are all the symptoms of mid level chronic fatigue syndrome. But if my body can now keep it under control like it just has then I won't need to go back to the netherworld of morphine. The only nice things on that are obviously pain management and a good nights sleep. But the rest of the time I'm like a sluggish lazy person, nauseous but anti emetics stop that. But he worst bit is I get all the symptoms of starting dementia. Can't remember words, names, forget what I'm talking about in the middle of a conversation. And of course the obligatory 500 visits to the kitchen only to get there and not have a clue as to why I'm there. No concentration so not worth watching telly. So the only thing I can do is sit and listen to music all day which is fine coz as you've probably seen I'm a heavy metal addict!! Bands from the 70s right through to today's metalcore and deathcore metal. (Really heavy and sung in a devil like growl)

    Yes I know I'm s bit old for all that but I've loved it since 1972 and will till the day they lower me into the ground or put me in the incinerator.

    Just hope it's not a false dawn.

    Cheers Ken


  • I know exactly what you mean. I do not think anything really works when we are in full flare? I suffer with insomnia, and when I go for a prolonged period without quality sleep I suffer with memory and recollection problems and it is awful.

    Take care my friend


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