newly RA

I started MTX about three months ago. It did help with my feet and inflammation. A lot!! Although that did help there. My hands and elbows are still painful and stiff and swollen. I was taking 3Mtx once a wk. I just started as of last week I went up to four MTX once a week. My doctor will only let me go to six MTX at the max eventually. I cant get over how tired I get and the burning in the joints. It seems like this RA moved so quickly. Is that normal?

9 Replies

  • Many people comment on how they just woke up one morning with it affecting them severely after just feeling a bit achey the day before. And I know that my flares come on really quickly over the matter of hours - almost you can see the joint getting red and swelling as you look at it.

  • Welcome boogieman. RD seems to hit us all differently. Some have multiple joint problems from the start, even before having their RD diagnosed, others like me are only aware of it in one place, with me it was my feet. That said 7 years post diagnosis if I need to stop my MTX for antibiotics I'm left in no doubt that it's spread to other joints.

    Your Rheumy started you off on a very low dose at 7.5mg, increasing to 10mg. He's done it gently, no bad thing sometimes as you're system doesn't get such a shock but the downside has been it's not tackling it quite well enough, not hit it & why you're feeling you've more joints involved, you've not enough of the med in your system to cope with the the disease.

    He'll probably increase it again soon but quite why he's said he'll ok my titre up to 15mg I'm not sure, unless you have pre existing lung or liver issues? You may need another DMARD to work alongside the MTX, this is called double therapy. I've recently needed an increase, done in two steps from 15mg to 17.5mg & then again up to 20mg as I have a history of my liver levels rising too high going straight from 15 to 20mg & I'm possibly needing to add another DMARD as I've still disease activity.

    The things you complain of are typical of the disease not being controlled, not really surprising at low dose. Were you not offered a steroid injection or a short course of oral steroids whilst waiting for MTX to work? You don't say if you've been prescribed an NSAID or any pain relief but if you see your GP he should be able to sort something for you, or if you have access to a Rheumy nurse let her know how things are, she may ask you to go in so you can be examined.

    It will get better, this & pre diagnosis are the worst times generally, trying to see just what it takes, med & dose wise, to bring your RD under control. Take it as easy as normal life allows whilst you're feeling like this, please don't try to push through.

  • Hi boogie an I'm on 20mgs of mtx injections and sulfazalasine2aday and I'm still having problems,just waiting for a reumy appointment to see what else can be done,hope you get fixed out

  • I have been prescribed a time release pain aid. But I believe the reason why I am so low is because before RA I have been battling RSD from a work injury. So saying that I am on other meds. I believe he is worried about too much for my liver. How much does stress effect RA? I have had some major stuff going on. My roof leaked and my kitchen ceiling fell in. Plus my mom is in hospital for a heart stent. That's just some of it? I am wondering if this is why my joints are really burning and painful of lately.?\

  • I think only your Rheumy can confirm if it's stress related (which can affect how well or not we are as it can cause flares) by examining you & considering your latest bloods. But yes, stress can trigger flares, no doubt. The longer you have the disease the more you'll recognise what can cause flares so you can avoid the things that can trigger an attack, though of course it's not always possible. Obviously you've had quite a bit to contend with, I certainly know how the worry of heart ops, they can cause flares!

    Again though you are at the start of treatment so it could be that the dose simply isn't high enough to keep you controlled, but this is second guessing so if you feel it's necessary do contact you Rheumy nurse, maybe even ask for an urgent appointment with your Rheumy. It's often hit & miss in the early days of treatment..... in fact I don't remember anyone here starting on one med & not needing some adjustment or additional meds, though I'm happy to be proved wrong!

    I also have time release pain relief but that won't have any impact on your joints. I take it your Rheumy is aware you also have RSD? I would think you're on some pretty strong meds for that too & I would think consideration must be paid to those, certainly with regards to your liver as you suggest. You do have your share just now don't you? If you're unfortunate enough to have type 2 I understand it's really tricky.

  • There seem to be a lot of different ways of approaching RD. I live in Victoria, BC and was given Methotrexate alone for about 4 months, before the rheumatologist started combing it with the DMARDs. Now I am continuing the Methotrexate (injectable) with the CIMZIA injectable.

    So many variations in RA and in the treatments! Cheers Doreen

  • Indeed! I've had the benefit of experiencing two quite different health systems & guidelines. Stuck with the one I've got for now. That said I'd be in a right old state without it so I'd better not diss it too much! It's the access to a Rheumy I have difficulty with really & constant reminders of costs/cost cutting. The trouble is it's the patient who pays for it in the end, my feet concur & now it's payback time, they're costing!! Nowhere near as much as those needing biologics & joint replacement surgery but I do wonder how much could have been saved if more money was to be assigned to Rheumatology departments to enable fast-track for diagnosis throughout the board. It runs right back to primary care too, I've had many a conversation with my GP about it. Ooo, turned into a mini rant, sorry!

    I hope you're doing ok on your personal mix? :)

  • Probably stress is big thing which doesn't help our RA,sorry to hear about your troubles but this site will help, we're all in the same boat

  • Mine was a sudden onset Sero-negative RA. From one day to the next I could hardly walk or get up. Looking back I may have been building up to it and didn't notice. After a year of Methotrexate and various DMARDs I am now on Cimzia and hoping it will work. The side effects from the DMARDs were pretty awful.

    Onward & upward! Cheers Doreen

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