Yup, back on it. According to the notes my nurse read, I wasn't ever supposed to be off it :P Why does this feel like failing? I think in part it's that magical thinking I do so well - if I will it strong enough the RD will slither off in disappointment. But I guess sore, hot joints are not the best indicators of victory. It's really this, huh? I hope we have better luck treating it than we did my gut problems. Mostly there was a lot of head shaking and puzzlement. I bumped one of my knuckles this morning and the pain was electric. That was sort of the end of my push to be steroid-free. Ah well, maybe I'll get the rest of my house as clean as my kitchen. I'm frustrated, but trying to cut myself some slack. It's hard for me to extend the same kindness to myself that I can clearly see other people deserve. Time for a new affirmation list on the mirror, methinks.


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  • God I panic at the thought of coming of my steroids as I know I wouldn't b able to do the work I do ..... But it's been two yrs and I know it's something they don't like to keep u on it full time ... But tbh when I have a flare up in my wrists and hands nothing comes close to any form of pain relief and to reduce swelling I just have to sit it out ... And boy does that frustrate me .... Wrist so bad last wk have been told I need to have op for my carpal tunnel .... But recovery is so long that there is no way I could be out of action for that long and keep my clients that won't happen ... Life is shit sometimes isn't it .... But chin up it can only get better ....somehow .,!!

  • I not convinced on better, but it does always get different, that's for sure. Many hugs for you, too.

  • Hey Bat, I can completely relate! Once my RA first got under control, I moved as quickly as I felt I could to taper off my meds. Yep, "I moved" because it was usually at my 3-month appts that I told my rheumy what I had done on my own. It started with removing the NSAIDs (my theory, "normal, healthy people" don't down the max of advil each day because they are feeling great). Next I tapered down my MTX from 10 pills to 4 (over an 8-month period). My rheumy and I had discussed in June 2013 going from 4 to 2 in September if things continued to look rosy. In September he told me he was retiring so wouldn't taper my meds further. I thought, screw that, I feel fine! I reduced to 2 pills in September, travelled to Panama for work in October (which ended up being more stressful than I expected & included more than 100 sandflea bites which I doubt are completely altruistic!), and by November, my left ring finger started swelling. I ignored it, took my wedding rings off and just kept ignoring the symptoms as best I could. By January 2014, I knew I needed something and went back on my NSAID (meloxicam). By February, I got an emergency appointment with my new rheumy and upped by MTX to 6 pills. I still didn't want to admit that I needed the drugs, so when there was no improvement after just a month, I foolishly decided to ditch the MTX altogether and focus on nutrition via the autoimmune protocol (AIP). Although my RA symptoms continued uncontrolled, I *felt* better on the inside (ie in my gut), and greatly appreciated the weight loss. But I now had 8 fingers affected and had problems driving myself to work. So I gave in to my rheumy's recommendations and maxed my MTX back up to 10 pills, then switched to Metoject and added 400mg hydroxy in June 2014. I HATED going back to the MTX max and adding yet another drug!

    I also started teleworking 4 days per week in July 2014. I felt well soon after - enough that by November 2014, I ditched the NSAID and halved the hydroxy. In January 2015, I ditched the hydroxy altogether because I was blaming it for some neuropathy issues I started experiencing. I'm down to 15 mg MTX via Metoject (from a start of 22.5 mg). I'm paying much closer attention to my own bodies needs and making myself follow more closely my rheumy's recommendations. I'm still far too independent, but I know that I cannot do this with diet alone and that the drugs definitely have their place.

    I know this is overlong, but I want you to know that you are not alone in the feelings you are experiencing. It's important to remember in these moments that RA is a chronic disease with no known cure so even when you are feeling great, it's still there. Best of luck as you manage through this current setback. It's good that we humans are ever hopeful, isn't it?! :)

  • hehehe I can just see myself running the cycle that you've described. I'll hang on to hope, and keep taking the meds. xx

  • Believing that one can will away RA is quite magical. There are miracles, but they don't happen often. I believe that your positive thinking is inspirational. Every time I go to the rheumatologist, I expect him to tell me that I was misdiagnosed and the disorder that resembles RA is acute.

  • i know have been on them for two years and would love to come off them also take leflunomide but unfortunately because i have bronchiectasis i keep getting chest infections. so now there is talk of me having injections of etanercpt because my steroids along with the RA drug have been reduced and i am in more pain. As a result of these meds along with others i now have put on nearly 3 st and feeling like a blob but i am still walkcrawlling just about !

  • soz forgot to say i can not take non steroidal !

  • You know me and you don't have RA lol :)

    Well we go and as you know I have a love hate relationship with steroids too.

    But of they want you to take them maybe bite the bullet and have a good quality of life till your RA meds kick in?

    Sending hugs x

  • you guys are all awesome, and I don't know how I'd get through this without you :D


  • Take them, let them do their work & with a bit of luck & a whole lot of hope for you that will be the end of them for a good while.

    I take a low dose maintenance steroid but can't increase it even though I have terribly swollen ankles so have to have injections in them eek! Only the second time I've needed an injection but as long as it gets the inflammation down I'll be a good girl & let them do their worst.

    Hope yours work quickly, time to be kind to yourself for a change. x

  • I'm doing my best, and taking them. I'm remembering that my knuckles should not look like I've been in a fist fight :P I'm going to try out for a chorus tonight, which would be a great kindness for me, I think. :) xx

  • Indeed it would & I hope they realise what an asset you'll be.

    I never used to swell anywhere except my ankles & feet so it was a big surprise to me when I was waiting to get a Rheumy to reinstate my meds after 3 months off them just where else I did swell. I had to have my wedding ring cut off because my normally skinny fingers were cutting off the blood supply. Proof if I needed it that the drugs work on my disease very well normally. I'm on lose dose steroids & really want to come off them but each time I get the end of tapering I flare. x

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