What's realistic?

Had review appointment with my rheumatologist this morning (who I have to say is amazing and trust implicitly). She was really pleased that the Benepali is working well for me, and told me I'm now in remission. Told her that my position today is chalk and cheese from where I was this time last year, however only feel as though I'm 75% back to my old self. My knees still hurt occasionally and I still have some pain across my upper back. However, I am now functional, whereas this time last year I couldn't work, couldn't drive, struggled up and down stairs, etc etc etc. The pain was really debilitating. Do I just have to accept this 75% position and keep everything crossed that I never go back THERE again??!! Had hoped that one day I would get back to 100% again, but now not sure if that's realistic?? Have just to use my Arcoxia (60mg) as and when required from now on (dictated by pain) as opposed to every day as previously.

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  • Hi mhairi

    I'm really please to hear of your success of your treatment and visit. What a great place to be and long may it continue!

    In terms of your question, I too have wondered how better, is "better" And what remission means in relation to that. Is it different for everyone ?

    I'd be interested in the responses you receive.

    However, so glad to hear of the progress youve made.

    Stay well.

    Marie

  • Thank you Marie. Not sure what to feel at the moment...

    How's your back?

  • Killing me! The oxycodone definitely takes the edge off the pain but I struggle to stay awake during the day then can't lay in bed without pain so awake most of the night? Just another thing to get through I think 😒

  • Oh dear, that doesn't sound good. Must be so hard when you've got kids to look after too. Hopefully you start to get some relief soon. x

  • Thanks mhairi

  • In my experience remission is a slow developer. I've been in and out of remission for several years now, and each year it has been a touch better. A couple of years ago my daily walk was limited to 3 or 4 km, now it's 5 or more. And I now have unopened packs of Arcoxia in my medicine cupboard. So keep thinking positive thoughts, it may well improve.

    And don't do what I did which was a) get so excited that I completely overdid it and went back to square 1 and b) get completely convinced that the RA had gone away and tapered off one of my drugs.....bad mistake as back to square - 1. Take it slowly, build up your stamina and exercise and hopefully many rewards soon.

  • Thanks Double H - I've been wondering too about the remission things. I tend to do the same thing. I felt SO GOOD yesterday that I got a huge amount done, and today I am sore - ha ha. But it is encouraging to think that over time it will continue to get better. I guess that makes sense since it took so long to get diagnosed for most of us..=)

  • Having erosive RA for 32 years and Hashimoto's for 39, was also dx with lupus to begin with. It's been an roller coaster. I alway know I have RA, and have always known my limitations and just got on with it. I have the meds to make sure I am the best I can be. I help myself with diet. Life on the whole has been good. I count my blessings, I know few people who don't have some problem or another. We are all different, I am getting older now but still have a zest for life, so wishing you all the best, just be positive. X

  • Perhaps some of your aches and pains, and not feeling too good, is down to loss of muscle strength and general fitness from when you were poorly? I have been well controlled on abatacept for almost 2 years now, and things have gradually improved as I've built up my muscle strength again. I reckon I felt around 70% better when abatacept first started working and this has improved to around 90% now. So yes I do think you can improve on 75% but it may not be different drugs you need, just time to recover your strength. I never want to go back there again either......horrible,dreadful time!

  • I have wondered that. I've just started a pilates class, and doing block of hydro at moment. Need to motivate myself to go to the gym, I'm not really a gym person, but my daughter just won a six month membership to the local gym so going to try it!! Had kind of hoped they would "tinker" around with my medication until they found my magic potion which would bring me back to 100%, but looks like that's not going to happen.

  • Well see how you feel once you have your strength back. If still only 75% they may think of tinkering with your meds, but all this stuff takes time. Good luck with gym etc. I don't much like gyms, but I'm fortunate in that I can manage tennis again, I try and swim a couple of times a week and walk everyday.....have a dog! My suggestion would be to find something you really enjoy then you're more likely to stick with it.

  • After 18 years of RA I look at the idea of how " much better can it get" with confidence. All through i have tried to keep moving....I strongly believe that exercising......by that I mean walking, bending & stretching normally- not rushing to the gym &,exercising until you hurt ...to be the way to go.....even whe n you'd rather just sit......move around gently regularly.

    My first Rheumy back in 1999 told that "use it or lose it" was the way to go....not .being particularly sporty except for tennis - which was out as my arms /hands/wrists are the worst affected.....I just stretched & walked when I could.& so far I have no deformed joints except a couple of fingers & that's OA not RA

    This way might not set the world on fire but it has worked for me......maybe it will, for you.

  • You are lucky you have got to 75% recovery with the drugs, sad to say we will never be 100% darling. Keep pushing for that 100% though because that means you are not giving up. I try to be well and as long as i keep breathing i will keep trying darling.xxxxxx

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