Painful and Persistant Flare

Hi everyone.

Back in August i had 15mg of Mtx Mixed with my sulazalazine but the mtx gave me the most violent of headaches, in October my rumey reduced the mtx to 10mg to try and elevate the headaches which worked.

I continued taking 10mg and was free from headaches and pain. Until the week before Christmas when I had a flare and still have. I Have since increased my mtx to 12.5mg and my next dose I am going to take 15mg once again now my body has got used to it in the hope the headaches don't return, my rumey wanted to take me off and start the process for bio drugs but I wanted to continue with the mtx as I thought this was to be my wonder drug.

The pain currently is so intense i had a steroid injection yesterday to give me some resbite. My hands are double the size my knuckles are raging red and my shoulders and hips hurt. I am trying to continue to go to work and look after the family home but when in pain this is becoming increasingly difficult, Does any of you lovely people have any suggestions I am not sure as if I should give up on the mtx as it's clearly not working and try a bio drug or continue on the mtx????


13 Replies

  • Firstly I'm sorry you are struggling so much. I was unable to tolerate Sulfa, MTX and Hydroxy so have been off DMARDs for over six months now because of this. I think if I were in your shoes I'd be wanting to try a Biologic drug as soon as possible. For many these are actually the wonder drugs and you could stay on MTX at lower dose (that won't cause headaches) as this increases the efficacy of the Biologics and also means that you have more choice about which you are offered. The alternative would be to try a different mix such as Hydroxichloraquine with Leflunomide perhaps?

  • Thanks twitchytoes,

    My first DMARD was hydroxy but it made my hair fall out so was unable to tolerate it, this is why my rhumy believes I would qualify for bio drugs as I have had 3 now and apart from sulfazalaine none of them have worked for me. My next Rhumey appointment is in two weeks so will discuss my options, again there is so many to choose from it's disheartening having to start all over again in the hope I find the right one. I feel emotionally drained from it all, I just want to get on with my life free from pain and being swollen.

    You take care


  • Well in this case I hope you do decide to give the Biologics a go and that they work very well and you get to be pain free and get on with your life as you wish - as we all wish of course. I know of quite a few people who haven't been able to tolerate DMARDs but who have tolerated the Biologics very well. It's fortunate that you have a rheumy appointment so soon and will hopefully have this option to try very soon as well.

  • I feel for you struggling as you are Caroline but I think this is something you really need to take advice from your Rheumy on. I understand why you would prefer to soldier on with MTX, you'd have a hard job taking me off it, the difference being I tolerate it & have no doubt it forms one part of the meds that control me, including low dose steroids. I think in your case you've to consider the possibilty of damage being caused whilst trying & possibly failing to stay on it rather than taking the next big step into the world of biologics.

    Maybe you can look at the position you're in more clearly once the steroid kicks in & relieves your pain & inflammation, write down just how you feel about your options in readiness for your Rheumy appointment? Hopefully things will start to look less bleak over the weekend & you'll be better prepared to evaluate your alternatives & what's best for you in the long term. Just a final thought, I think I'm right... your folic acid was increased wasn't it? Don't know if you're on MTX tablets or injections, not sure you said when we've discussed your MTX before.

    Keep us updated won't you? x

  • Thanks nmh, I will start to do some research on bio meds before my appointment, Beverly has provided some useful links for me, to be honest it's so overwhelming with so many to choose from but I'm sure my Rhumey will help me. I am in mtx tablets and not sure how differently injections work, my folic acid is once a day apart from the day before my mtx whereby I take 2, initially to help with the headaches.

    I will keep you posted many thanks


  • Have you considered injections? Thinking if you're still preferring to keep MTX in the mix your Rheumy can prescribe a changeover in the meantime. There's also a train of thought that a slight reduction in dose be prescribed as the injections are absorbed better than the tablets. I much prefer subcut & whilst I didn't suffer headaches on tablets I did have nausea but in over 4 years I've just less appetite & more tired the day after injecting. One other thing, do you take your folic acid on MTX day? I've always been directed to miss MTX day as it interferes with the efficacy of MTX.

    I hope the steroid injection is taking effect & you have at least a little less pain today. x

  • I miss folic acid on the day I take my mtx. thanks nmh, you are so knowledgeable I am guessing you have had this dreadful disease for many years. The steroids have started to provide a little relief today but my shoulder and fingers are still as painful, but having a day off from work yesterday I spent the day sleeping and relaxing so that's also helps.

    I shall be increasing my next mtx dose to the original 6 tabs prescribed and see how I fare. I will be armed with much information that I have collated over the past week, for my next Rhumey visit.

    Thank you very much


  • Good, that's the norm. I was diagnosed in the summer of 2008 & my Consultant encouraged me from the start to be proactive, not that I needed encouraging, that's my way. It used to bemuse me when friends wouldn't or didn't ask their doctor or specialist anything yet complain they weren't told anything either! There are those in the medical profession, the old school generally, who prefer to take control, like their patients to know little & accept their word as law but if we're to manage our conditions well we need to be kept in the loop so never be backwards at coming forwards is a good rule with all things RD! Anyway hopefully your Rheumy isn't old school & I hope your steroid reaches your shoulder & fingers soon & you can't do much better for yourself than what you're doing, resting. Have you tried warmth or cool on your shoulder? Mine are a nuisance but do react & the pain's eased with an electronic heat pad. It is important not to let them go stiff though, you run the risk of your muscles knotting causing unnecessary avoidable discomfort on top of your pain. You'll find your own ways of dealing with your condition but don't let it determine who you are. I hope whichever protocol is decided on works for you but don't get disheartened, unfortunately sometimes we need to try a few regimes before we hit the jackpot! x :)

  • Thanks nmh you are a star I always read your posts and replies to thoses of us out there that are new to RD. I will take onboard all of your advice in finding MY drug

  • :) x

  • Hi emiliekofi,

    sorry to hear that you are having such a bad time of it. I have put some links below to our publications on biologics for you to look at. It may well be that in the first instance you are not given a choice of biologics but if you are then there are a number of things to consider other than the drug per se such as how often it is administered, what method is used (infusion, sub cut or pen) etc. Often it is these considerations which sway the opinion of people. There may be other medical reasons why some of the biologics may not be suitable also:

    Hope this information helps you. If you do find yourself going the route of biologics and want to discuss it more please feel free to contact the helpline either by e-mail or phone on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm



    Beverley (NRAS Helpline)

  • Thank you

  • Go see if you can get yourself on anti TNF it's very helpful ( enbrel ) good luck

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