MTX not working

Hi all, I have not blogged on here for a while so thought I would give it another try. Hope you are feeling as well as can be expected.

I have been on 20mg of MTX by tablets since diagnosis last Oct. It is unfortunately not working. 8 days ago I could not stand it any longer so I rang my helpline and they spoke to a rheumy and increased my pred. Now originally I was on pred for PMR (polymyalgia rhuematica) but I know some RA patients also have pred. I have been struggling to reduce this even with taking the MTX but have tried in vane to do so. I got down to 12mg but now back up to 15mg which has gave some relief. The nurse on the helpline was getting in touch with my own nurse to see if something else could be added to the MTX but like I said that was 8 days ago and I have heard nothing. I assume I have to wait for my next appointment in March.

I think the cold weather is also affecting me as my ankles and toes are agony. My legs hurt in general but not sure why this is and my neck and shoulders are swollen again. Some days my hands are fine but mostly my wrists and fingers are very painful.

I am in two minds weather to look into a hand splint to help relax them overnight. As anyone else got these?

Last night the fatigue set in big time and I went to bed at 7.45pm even before my 7yr old which she thought was funny. Needless to say I have not slept the whole night getting up twice to the loo and generally being in pain with my legs mostly so could not settle.

I am going to take it easy today agini and see how I go. Might have to ring the helpline again as they told me to if not much relief and they would increase the pred to 20mg. I really want off the pred and rid of this moon face :( On the plus side one of my BP meds has been changed as one was making me have water retention so the new tabs are for BP and water and I have lost 6lb in a week and my feet are no longer swollen.

Gentle hugs and keep smiling

Sue

17 Replies

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  • OOH Gosh yes the meds can stop working and or need increasing mxt dose can go as high as 22.5/ 25mg for arthritis in tablet form and up to 25mg injectable form.. you need advice from your team,. they may increase your mtx that last little bit or add in another dmard? or try a new one/ we are not experts in rheum and can only speak from personal experience.

    My body couldnt tolerate mtx at a dose as high as yours but lots of people use it with no trouble like you have been doing. medication can stop working my gold medication stopped working it was gradual.. mid october but effects got worse and peaked dec and jan. I have had steroid injection and am still on the current lot of bridging steroids,.My oral steroid dose currently standing at 7mg I am also taking now bone protectant alendronic acid and calceos.

    Speak to your gp/ health team about bone protection/ calcium as if you arent taking it it may be a good idea.

    Long term use of steriods at dose of 10mg or greater can cause fractures/ bone problems and cataracts..

    , Now that aside I am on my third lot of steroids in . 3.5years ., but beyond my control due to dmard problems and my rhuem team having to be frank a poor budget and in my opinion out dated drug and prescribing knowledge?. the latest offering for me could be penicillamine??. of the prehistoric are. hoping to get appproval funding for ant tnf.. currently relaying on steroids and painkillers.

  • Hi Summer

    Yes already on Alendronic acid and calceos as have been on pred since last June. Saw my nurse in Dec and she said if my CRP does not start going down they will think about changing to injections but the nurse on the helpline last week said it may be best to add another DMARD. I think the injection would be best to try first as it is more effective than oral due to not having to go through your system first. I can't see the point of adding another med to one that is clearly not working. CRP still not lowering. I am also diabetic so the pred is keeping my BG up so had to have more meds for that, it's a wonder I don't rattle lol.

  • Hi Sue. So sorry to hear you are feeling so very rough. I am new to all this, so can't make any educated comments, so just wanted to give you a little moral support. Heres hoping things get better for you.

    (((hugs))) (gentle)

    X

  • Thank you, much appreciated.

    I am just so sick of feeling so ill and drained especially as I used to be a very busy mummy running my own newsagents. I now only have 2 dependants but I home educate them which is good as I don't have to rush around to do a school run thank goodness.

  • Moral support is the best medicene that we can all give xx

  • hi sue i know how you feel this morning i was up early 4.30 if its not one thing its another but i do put a lot down to how some of us try are hardest to cart our bodies about in although we think we are walking fine we are in fact NOT and i think this sort of gives a reaction to other parts of our bodies

    if i could chop me feet off this morning i would do.

    i dont feel as draind as much as bleeding aching with cold areas in the old feet with cold sores today i ask ya get rid of one it moves somewhere else.

    im begining to think this thing can bring on other problems in itself so you end up with more than one

    you could have a bit of fibro with it sue this can be bad also

    and whatch you dont stress your self to much with it

    regards john

    oh sue try some e45 rubbed on the feet before bed time do you no harm that would keep the skin supple and that and dont forget between the toes

  • know how you feel with chopping your feet off John, I don't feel like mine are there lol. Funny you should say about Fibro. I asked my GP a few years ago after keep going back with the same aches and pains. He told me to go and look up CFS istead then report back if I thought it was me, the cheek. To be honest if I google all of them I have most symptoms, yes CFS fit me which I found out that was the new term for ME as did Fibro. But instead almost a year ago on the same day I was diagnoses with diabetes my gP (a diff one) said he thought I had polymyalgia. He would not treat me cos of the diabetes but by the end of June last year they had no choice hence being up and down on the pred.

  • the cheek sue YOU LOOK IT UP 100k a year and they bloody ask you

    if ya looked at the internet you would probably think you had the big c if you looked at all the symptoms their i was convinced at one point something like that thing that does cartlidges going wrong was my problem.

    but i do think fibro is a consern for us on here as well.

    when i had to go back and give a re blood test on glucose i thought right we got it its not ra or oa its diabetic but alas no it wasnt back to square one

  • I tested neg for th RA factor and I think that's why it has took so long to diagnose with me. A new young gP came to our practice and he has been fab especially with the PMR and diabetes and it was him who thought I had RA so I questioned him cos of neg RA factor and he told me about seroneg rA and referred me straight away to a rheumy. Now I had seen this rheumy 2yrs previously with painful hands and fingers but he discharged me after a scan showed nothing. The moment I walked into his room he apologised for discharging me as it was clearly rA and cos he had not seen me and treated me he said it had hit me like a steam train. He then went on and doubted I had PMR but in his letter of diagnosis he put in the PMR.

  • Hello, mtx started working well for me at 25mg - prior to that I hadn't noticed much effect at all. I have no side effects at all from it, either (unless you count very dry hair and bags under the eyes which, on a grumpy day, I do!) I know we have had a reminder from NRAS about not 'playing doctor' on here which I completely agree with so what suits one may not suit another, of course, but the 2 DMARD regime does seem to be the accepted 'best practice' in many cases.

    Mtx hasn't quite gone the whole hog for me, I think it has done as much as it's going to, so I'm going to start on Sulfasalazine soon. I never did get around to asking my rheumy why they left me on monotherapy for so long, although the fact that mtx worked so well at first might be something to do with it I suppose!

    It does sound as if your nurse was hinting at starting you on another DMARD in addition to mtx. I'd urge you to get back to her and plead with her to get things moving. Some Rheumy nurses will do their utmost to bring an appointment forward if needs be. I would ask her straight if she thinks that adding in another DMARD is on the cards. If she says yes or maybe, then point out that you are in agony and any new DMARD will take a while to kick in. Ergo: you need an appointment before March.

    I think that steroids are a stop-gap, ideally. Your Rheumy team really need to help you get off them, especially as that is what you want. They may of course have some medical reason for increasing the dose but it doesn't half sound as if they are just upping the dose to 20mg while you wait for more a more considered approach that requires an appointment.

    I know i'm being long-winded, sorry, it makes me so cross that people in agony are getting fobbed off, which is how it seems. Incidentally, I recommend hand splints - maybe it is partly psychological but they help me. Some are so big & clunky, though. If you look on Amazon there should be a grey one aimed specifically at women - reviews may say it's for the smaller hand but mine are biggish & it fits snugly, think it is great for most women's hands. Have not worn it for ages but if I can find it I'll PM you with the make.

    Good luck, Luce xx

  • Thank you. I have already rang the hospital to try and get a cancellation but they are overbooked so unlikely. As i said earlier the pred was for another illness PMR and when on 20mg to 30mg per day my cRP reduced down to 14. Once I go below 15mg it's straight back up again.

    I have looked on amazon for the splints but I need one that does the wrist and 3 fingers and am struggling to find one. My local Chemist has suggested I go to their main shop as they have a catalogue to order from and as I am only 5ft 1" I have very small hands.

  • If you live relatively near hospital could try saying that you can get there within a certain time if someone fails to turn up or cancels on the day. I tried this once, was told nothing doing, then that evening someone phoned to tell me an appt. was available the next morning!

  • Sorry you are suffering so. Do you have an OT or physio I wonder? As well as fixing me up with useful hand saving gadgets they organised for me to see the hand specialist OT at the hospital and she made me a special night resting splint that was moulded to fit my hand and wrist. I haven't had to use it much since it was made (after all the main wrist flaring) but when I have I've found it helps a lot as my whole arm relaxes and I don't wake up finding myself in agony as everything is kept still by it.

    Re injectable MTX: My ESR only started to come down and stay down once I was switched last September. I have only made it up to 17.5 mg recently but seem to be tolerating it fine again. The rheumy I saw 3 weeks ago told me it is significantly more effective than oral stuff so 15mg Metoject = 25 oral MTX he explained. Well worth try perhaps? And also I think combination of therapies is considered the best treatment for many now. But as you have complications with diabetes and PMR I can see why mono therapy might be preferable. As Luce suggests if you can push for a sooner rheumy appointment the better. On the plus side I believe PMR usually goes away so if that does happen you will hopefully be able to benefit more from DMARDs and should then be able to quit Prednisolone. Tilda x

  • Hello Sue, just read your blog so late in replying, I recommend splints there are both night time and day time ones and I got mine from the OT like Tilda but think any of the rheummy team could get them for you.

    If you keep on at your rheummy nurse you could get your appointment moved up, March is a very long time to wait when you are in pain.

    I have been on and off metx and a few different dmards, on sulpha at present and they have put me back on metx with that. That appears to be the next step when one dmard is not doing the job.

    Hope you get some answers and hope you get some sleep tonight.

  • Thank you Mads

    Yes got some sleep last night which is good and I feel quite well today. I am hoping it stays that way for a whole day :)

    I have tried ring the hospital but they are over booked so if I get to much pain that I can't cope I will ring the helpline again. I went to my GP last week cos of the pain and he told me to ring the helpline as I suppose he won't prescribe anything cos of under the rheumy. I did wonder whether to ask for a steroid injection though to keep me going til rheumy app.

  • I've also been on MTX since October and am up to 20mg now. I've felt like I was getting worse with more pains that are coming and going on a daily basis and been like this since end of December. Got to bring rheumy appt forward last week and basically told to wait another 4 months to give it a chance to work. Wasn't very happy. When I was diagnosed he pretty much said they'd add in another drug this year so I'm pretty down in the dumps about having to wait 4 months while my wrists and fingers are killing me.

    I was going to mention an OT too, rather than buying a splint from a chemist. I should take my advice and get hold of one too, I'm just concerned that splints make joints stiff and seize up due to non-movement, but I don't know if that would apply to wearing them for short periods?

    Hope you get things sorted.

    Jenny

  • It's just crap isn't it how much we have to wait? Also why are we so afraid to question these professionals when it's our pain?

    I think if the splints or only wore for short times it just helps to rest the joints so the inflammation can go down. I will get to the chemist to order some as I would probably have to wait to long to get an OT app also.

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