Hello everyone... I popped in to have a look at a post I got a notification ago, and realised to my horror that it has been 18 months or so since I last visited! Hope everyone is doing ok.
I'm now 2 years past diagnosis with 'inflammatory arthritis' and in Feb it will be 2 years since that dx was changed to psoriatic arthritis, when the hydroxy they initially treated me with led to a dramatic flare of flexural psoriasis... I have been on methotrexate since Feb 2015 and mtx injections for 18 months. I've tried a couple of other things, including sulfasalazine and Apremilast, but they both made me too ill, so I'm back taking just mtx and NSAIDs at the mo. I'm still veggie and sugar-free, and don't eat bread either... I still swim (though not as much as I'd like at the mo)...
The good news is, my PsA is - I think, mostly - quite well controlled. Most of those weird inflammatory symptoms I had pre-treatment have gone or are much improved. No IBS symptoms any more; chronic rhinitis almost gone; uveitis hasn't reoccurred; skin rarely flares... Best of all, the all-over pain I think was enthesitis has pretty much gone, although it will flare and I get generally achy if I get a virus too.
The not-so-good news is that my OA is bad, causes quite a bit of pain (despite the NSAIDs) and has mangled my feet. But I have PIP, a blue badge and NHS-built special shoes, and have so far managed without the surgery that I'll eventually need.
The most amazing thing - and 2-5 years ago I thought this would never be possible again - is that my energy levels are so much improved that I am working full-time again, in a very high-pressure busy job (45-50hours per week plus national travel), and managing it. I hope that gives some hope to those of you who are newly diagnosed, and at that awful stage of feeling like your life is over. It isn't, honest!
Anyway, I'll try to pop in again from time to time. Take care of yourselves!
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flow4
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Hiya Flow! Lovely to hear from you & even better that you're after some pebbles in the road doing well. It's a great boost to anyone who isn't so thank you.
Your OA pain, I also have OA you may remember? I experienced the pain, NSAID wasn't completely doing it so my GP drew up a list of options for me. I eventually settled on starting Butrans patches & they worked so well once I titred up to an appropriate dose. I do really well on them, I sleep better, I move better & best of all it doesn't cause cognitive issues for me to say it's quite a strong pain killer. Do you think talking to your GP about pain relief is an idea, that is if it's your GP who takes care of your OA needs, your Rheumy otherwise. My hands were becoming more OA affected so I was referred to Occupational Therapy who gave me Physio & exercises to do. They've made my hand less useless, or nearly useless! My grip is far better & I'm more confident of them.
Anyway, lovely to hear from you. I wish you & your family a happy Christmas & let's hope next year continues in the same vein health-wise. x
Hi NMH, how are you?! I am a BIG fan of OTs! I saw a lovely OT for my hands a couple of years ago, and she was extremely useful, and was also the person who most recognised and validated how much I was struggling, and gave me the confidence to claim PIP. My hands are generally a lot better now too.
Hi Flow. It’s great to hear that you’re so much better generally and working in a demanding job too. I’m 3 years post diagnosis and suffered enthesis pain, but mine has subsided now. I don’t know if it’s the Mxt or various steroid injections Ive had or maybe just the course of the disease.
I have OA too but it’s not too bad. Hope the current meds keep working for you. It sounds as if you’ve got the diet sorted. Terrific news for all those at the start of this delightful disease.
So nice to have good news! Glad things are working out manageably for you - but don't work too hard. Or rather don't work to the level where you get stressed...if you enjoy it then it's probably good for your health but otherwise take care.
Really good to hear that you are doing so well now...shows that there can be light at the end of the tunnel. Tocillizumab left me battling a life threatening renal/abdominal abscess, followed by constant infections. After a long 18 months, I am back on hydroxychloroqine and MTX. Not dared yet to start another biologic. Struggling, but still trying!
So glad that things are working so well for you. M x
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How long do we leave it before seeing doctor?
Hydroxychloroquine: lag time? (+ Triple Therapy)
First major flare up in long time: I feel pitiful.
Long flight - recommendations
Light at the end of a long tunnel
