It's been a long time! 12 months no meds no pain and here I am again :(

General Blog
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Hi everyone,

My name’s Kelly and I’m now 31.
I used to be a regular here while my PsA was at it’s ‘peak’ and I was letting it rule my life. I was suspected of having PsA at age 26, diagnosed at 28 but my GP suspects I first developed signs at age 16 but no one connected the pieces of the puzzle.

I was on MTx and Sulfasalazine for about 18months and when I moved to the UK for 6 months for work my symptoms pretty much vanished! My joints seemed to love the cold weather! Strange I know! And I was working to work at the hospital everyday which was great for my spondylitis and I also made sure I had great footwear. I was a new person, for the first time in years I had no pain! I decided to go cold turkey on my meds as I felt I no longer needed them. And I’ve now been off them for 12 months without any problems at all!

I’ve been back in Australia now since January and over the past 3 months my symptoms appear to be returning and it seems my arthritis is deciding to find new places like my hands/wrists. I’m scared that what I experienced was just a bout of remission which I’ve had once before :frowning: my left wrist has become so bad over the last 24 hours that I can’t even use my knife and fork to cut my food! I’m scared at how fast my wrist has declined in just 2 days when it had be good for 12months. Now I’m stuck, what do I do? I really hate the meds as they make me really sick and feeling hungover when I don’t even drink at all.

I’ve been sick for the last 4 weeks with a chest infection from the flu and I developed chest pains which they diagnosed as pleurisy. Has anyone else hear had that? It’s like an elephant is sitting on my back between my shoulder blades and a hot knife is stabbing me in my chest near the breast bone and the left side of my chest. It seems like more than a coincidence that my arthritis has flared in my wrist so suddenly it makes me wonder if the chest pains is related to the PsA as I’ve had costochondritis before however, it felt different to this so maybe it’s in a different spot this time?

Anyway, I’m feeling a bit lost and scared at the moment because I work in ultrasound scanning people all day in both the ED and outpatients and I need to be fit and healthy for my job. My job requires a huge amount of precision and dexterity and sometimes I have to hold the prob in one spot for nearly an hour when we have a complicated biopsy for example and I’m worried my wrists won’t let me do that soon - I’m predominantly left handed as I write with my left but luckily I’m ambidextrous and scan with my right or I’d be out of work right now. That really concerns me as I travel for my job and I’m going back to the UK in 8 weeks for another 6 month post. Even typing this is a mission so I will leave this as a short novel :wink:

any suggestions on natural therapies or if I should do maybe just another 6 months on my meds is welcome as I don’t currently have a specialist anymore as I live out of a suitcase and don’t stay in one spot for more than 6 months, which makes managing my health very difficult! I think my fellow PsA sufferers know more than any rheumo! Thanks guys, I have missed you all
Kelly

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Hi Kelly, I love the sound of your itinerant lifestyle! And of the remission. Got me wondering whereabouts in the UK you were based - I might go there myself and see if it works for me!
Actually I probably don’t need to go wandering on account of my PsA right now … my joints are pretty good. That’s down to Humira. However there’s a chance I might not be able to stay on it for various reasons. So I am very interested in your experience for quite selfish reasons. I could contemplate stopping Humira now if I kept my blinkers on, it’s thinking what would happen down the line that worries me.
Obviously what’s happened to you is rather different. It sounds to me as if you had a wonderful period of spontaneous remission. I’m not sure that you were wise to stop your meds … but I can understand why you did, especially if the ones you were on were hard to tolerate.
I’ll cut to the chase - I think you need to see a rheumy. I think if PsA’s reared its ugly head again you’ll need meds. Ideally drugs that you can tolerate without too much trouble. It is quite possible to travel with meds, quite possible to get healthcare while in the UK as you undoubtedly know.
If you re-post this blog in the Complementary Therapies section, you may well get some thoughts about alternative approaches. But I don’t know of any alternative remedy that protects the joints or indeed the whole body from the disease process. I wish I did!
One thing though … whatever you decide to do, I hope you go into remission again & soon. Good luck!

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I am so sorry to hear that you are having pain again. The honest truth is that you really need to get back on something for PsA. I can undrstand wanting to avoid them, especially if you wwere taking DMARDS. I know how bad they can make you feel. I was on mtx for year until my lfts went a little bonkers and I was taken off. I did find that taking it via injection and taking high doses of prescirption folic acid really helped with the side effects.But, as you already know, this will get worse and there is a very realy risk of having permanent damage and pain. I feel your frustration, I really do. Until 7 months ago, I was a nurse with an excellent, well paying job. Now, i'm wondering if I should even bother to renew my lisense. I haven't been able to work and it is so fustrating.

please forgive any typos or misspellings. My cat is making it difficult to reach my keyboard! Also, you may want to repost this under the discussions tabs so that you get more responses; not everyoe reads the blogs.