Off MTX not sure what next

Off MTX not sure what next

For those following at home........I spoke to the rheumy today and he agreed what I am experiencing is an adverse reaction to MTX, was surprised by my manic experience on Saturday morning but agreed that as it is me we were talking about anything is possible. He was disappointed that I cannot continue on it and said he may try Imuran next. I am still feeling the burning, crawling skin and swollen feet and legs but added to that I felt like I have been hit by a bus the last two days and could barely drag myself off work this morning. Everything hurts.......hoping the effects of mtx wear off quickly.

34 Replies

  • Oh bless you xxxx

  • Oh well back on the merry go round until the next time. Problem is I will only be taking 5mg of pred until I see him again next March. Back to square one for me.

  • Feel for you, March sounds a long way off. Take care x

  • Thanks. I'm sure I'll survive, painfully, but I will be ok.

  • Sorry to hear that. I didn't do well on MTX either and as you know, I'm back to square one also. This is so frustrating! I hope you do well until your next RA visit. x

  • Thanks, I am thinking it's back to the drawing board too. hahaha

  • So sorry for you. I can't imagine how awful it must be without proper treatment. Makes me so amazingly grateful to my body for tolerating MTX. And I love the cat in the picture!

  • Hahah that cat is how I feel. Strung out and flat as a tack. It has been two and a half years now so what's a few more months in the scheme of things.

  • So sorry it didn't work. Can't you ask for an urgent appointment in view of the circumstances? Hope you get some relief soon.

    Love the cat!!! M x

  • He is on leave now and told me he has asked the registrar at the hospital to contact me. Better to get over the Christmas period without any terrible side effects when no one is around, than have to go to hospital, which I hate with a passion and will do anything to avoid. The cat is exactly how I am feeling. hahahah

  • That's such a shame but so pleased you actually got to speak to your Rheumy! Hope it leaves your system quickly so you can get your slim ankle back & stop the itchy scratchies! Bet you feel just like the cat in the pic don't you? Lol x :D

  • I do feel like the cat in the picture. hahaha In fact as the days go by I am feeling more like the cat. Off for a blood test this morning to see what is going on. I cannot believe how fast I have crashed and burned.

  • Oh dear I tried to be optimistic for you regarding MTX but sorry this one has failed you too. Welcome to the ranks of those with unmedicated Rheumatoid! it really isn't a great place but at least you can have a side effect free Xmas - love the cat ...sigh! X

  • I am hoping so unless he decides that the registrar should put me on imuran. I am actually not keen to go on anything for a while as I have to have a 3rd cardiac ablation in early Feb next year so would be happy to have no immune suppressing drugs on board. hahahaha

  • No one can force you to take another immune suppressing drug of course so if you feel strongly that potential side effects are worse than the effects of uncontrolled disease then stand firm until your cardiac procedure is over. It's all a balance of evils as my GP says!

  • He won't force me I think he is concerned that I have gone so long with nothing helping and as I am extremely difficult to treat due to chemical sensitivities he is trying the least aggressive treatment first. I just feel uncomfortable having heart surgery with low immune system as I have very few antibiotics I can take if I get an infection in my heart. Just a little daunting for me to think about.

  • Yes I can really see how daunting this must be for you.

  • I just try not to think about it and plough on and hope for the best! lalalalalalalala going through my mind so I don't get overwhelmed hahahahah

  • I feel same way about my forthcoming nerve and muscle biopsies, extensive nerve conduction, CT and brain MRI. Terrified of what they might find but equally so about what they might not!

  • I think it is the fear of the unknown that sits in our minds. At least with me I know what the problem is and what I am in for; about 8 hours laying on a little hard bed wide awake, while they play with my heart to try and burn off the extra pathways. I would not like to be doing what you are having done. Not knowing is worse for me. I like to know why things are doing what they do. I hope they can get to the bottom of what is going on with you.

  • Thanks. It is very anxiety provoking I admit. I try to divert myself with work and family and friends but it's usually there in the back of my mind somewhere. For me, as I think you will understand, the worst thing would be if they tell me nothing flags up at all and I'm stuck forever more on symptom treating drugs like those I'm taking now. So the term Idiopathic would really not be great but it is what gp says best expect. Hey ho.

  • I hate that term idiopathic. It means they don't have the knowledge or technology yet to figure it out. I know what you mean about in the back of your mind. So frustrating isn't it.

  • Yep - idiopathic = idiotic and pathetic rolled into one?! Hmmmm let's hope mine is part of my RA or immune mediated but With my daft health tendencies I'm not counting on it! X

  • You are not idiotic or pathetic and don't let any of those medical professionals refer or allude to that. It is wrong. Yes I understand the weirdness, I have a huge dose of that too when it comes to "oh that is not normally"...that is all they get out before I say "it's me we are talking about".......

  • Thanks for this SOM - very grateful as I lie here once more in the early hours with hands and feet burning like they've been sitting in bed of nettles for hours! Very fed up with being me. My GP would be cross if he knew I'd stopped naproxen (which works and I love!) but don't see how on earth I want to get stuck on an antidepressant (Duloxetine) that gives me iinsomnia and no relief unless I know if and when it's going to work or not. Easy for them to shove us on some sticking plaster drugs and go off for their Xmas hols and forget about us but we take the consequences in the short and long term so it's our job to decide what we can put up with for the sake of pain, joints, nerves or whatever.

  • Why is it that it plays up at night the most? I had the same problem last night grrr. I may have missed something along the way but can I ask why you stopped Naproxen? I also get the pain of drugs that are supposed to work one way, having a paradoxical effect. I tried temazapan once and it kept me awake the whole night. My GP laughed at me when I said Well you can keep that if you think it was going to make me sleep. I will put up with a lot but when it is impacting so much that I consider taking time off work I know I am not coping.

  • It is a relief having someone to chat to about this in the early hours I must say - thinking of you on the other side of the world isn't the Internet amazing?!

    I stopped the naproxen myself day before yesterday after a much better week pain wise. The reason being that this new Duloxetine/ Cymbalta keeps me awake and I already suffer from insomnia. So I was relatively pain free but wide awake each night wondering how I will know if Duloxetine is going to work or not if I'm masking the pain already with naproxen? It's not like a DMARD in that it doesn't halt or slow the disease process and it doesn't take months to work. But I don't want to take an antidepressant for nerve pain unless I'm sure it's worth the consequences ie dependency, insomnia and other more insidious effects. I'm not depressed so I don't need my brain patterns altering per say unless it's doing the job it's meant to. If not I'll just stop and get back on naproxen which does at least work!

  • Ahhh Ok trying to figure what does and doesn't work. Sorry it's been a long day and I am still feeling wrung out like a rag after the last few weeks of MTX reactions. I tried lyrica but OMG it had the worst side effects so I chucked it out after about 6 weeks. I felt like I had lost my mind and was demented apart from having legs and feet like balloons. So I am not keen to try any of those mind altering drugs at all. Look what happened on MTX among other things a quite psychotic episode. I do not like being not in charge of my mind. I have the sleeplessness too but I think I have almost come to terms with only a couple of hours sleep a night after doing this for 2 3/4 years.

  • Don't say sorry you must be shattered and I don't expect anyone to keep track of my drug experiments anyhow!

    Yes me too on the sleep deprivation front. The thing I forgot to mention is that taking Duloxetine has coincided with the arrival of a really annoying tickly cough and having to clear my throat constantly as there's a frog caught in it. Looked it up ealier and second most common side effect listed is a cough! Regretting asking for repeat prescription now but will give it another week/ ten days just to see if cough and insomnia settle down and to keep gp happy! Your reaction to Lyrica doesn't surprise me at all - made me laugh as Gaberpebebtin did same thing to me! Son suggested he buy me weed for my xmas prezzie and I take up this instead. I told him that was cause of my first ever strong drug reaction as it made me pass out after throwing up when I was about 17! He

    didn't believe me and pointed out it is at least a natural product unlike all the rubbish I take. I didn't point out back that this doesn't sit well coming from a boy who lives off Subway and MacDonald's!

  • Oh dear you sound like me. I think I am losing a lot of tolerance for stuffing my body around with drugs that cause more problems than they fix. I am hoping the MTX will wear off quickly I have only been on it 9 weeks so I guess it will be out of my system soon. I am over having painful fat feet and legs. I am also hoping the prickly burning goes too. It took quite a few weeks after taking arava for it to subside so I guess it may take a while again.

    My grandkids watch in amazement as I take all these tablets and keep asking if it is hard hahahah I am hoping to drop some of them if the ablation works next year. Freakily I have to stop all heart meds 2 weeks prior and boy that is going to be one scary ride.

  • love the picture someonesmother!

    -I haven't tried Imuran, but I do hope it works for you and you get some relief. Indeed MTX does work really good, but for some those side effects are just too much. I am also taken off MTX and put on Prednisone. I know MTX stays in your body awhile...same as it takes awhile to build up in your body when you are taking it, but hopefully now that you stopped the MTX soon your side effects will lessen and disappear. Good luck with the Imuran!

  • Yeah it is so how I felt hahaha I have been on pred for a while now but going down to 5mg again and it really doesn't do much at that level for me. Ho hum looks like it will be an achy Christmas and New year.

  • I did have side effects of height doses of mtx 20mg but nothing like you are describing. Anyway there are plenty of others to try And it was humira that did wonders for me. Within 4 weeks of starting I could feel massive improvement and been back to 98% of my pre RA state for several years now. I sure that you will find the correct treatment for you in the end. Took 2 years for me to settle on the solution that worked.

  • Thanks Richard. I am coming up to three years and still in the early stages. I had to get my liver to a state where I could handle the drugs, it suffered damage from an adverse reaction to erythromycin. I look forward to the day that something puts me in a position that I feel almost normal again. It has been a struggle.

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