Back here again?

[Bon1]

Hello everyone and apologies in advance in case this turns out to be a long/ranty/weepy/mental post.

So the short version is: all last year back pain. February this year explosive flair and massive weight loss. High dose prednisone to try and curb things. Sulfasalazine which did nothing except nearly kill me. Then methotrexate. Wow! The stuff worked super quick and before I knew it I was running and jumping and all sorts ( albeit a bit grumpy due to being sober)

Then back at work come September ( I teach and have a fairly heavy managerial role at a secondary school). Four weeks in of hard graft and stress then last Friday wallop. Suddenly felt bad again and sure enough my bloods show increased CPR etc again. ( by the way still on much lower dose pred now- 10mg instead of 40!)

I had an appointment with the Rheum nurse yesterday and bloody Typical I got a trainee. I'm literally serious when I say I knew more than she did. It was a bit of a farce.

So as it stands I am supposed to up the methotrexate but so many unanswered questions - hence my plea to you guys. Because I'm not joking I reckon I'll get more sense out of just one reply from you lot who are not medical professionals than I did out of twenty minutes with the work experience girl from yesterday....

Question 1. Why now? How come everything was great and now it's suddenly just not great?

2. Will upping the meth help?? I mean it was working fine on the previous dose and then it's just ... Not...

3. Is there anything else I can do??? I have back pain - sero negative enteropathic arthritis is what they think is my diagnosis. I know that methotrexate doesn't work for this ( she didn't) but do I just have to live with that forever?

4. Will it always be this way?? This is where I get a bit maudlin. I kind of thought hurrah everything's going to be ok. And now I don't think that any more....

Thanks in advance people.

[Hidden]

can i suggest you give our helpline a call tomorrow or email them, they will be able to give you help and support. You can contact them on 08002987650 or by email at [e-mail]

Hope this helps.

Val, NRAS

[Simba1992]

What I have understood is that enteropathic arthritis is caused by IBS or Chrons disease, usually. Patients with Chrons and IBS have had good results with LDN. Perhaps your arthritis pain would decrease if you could get your gut to calm down. Perhaps an idea to look into ldnresearch.org. Here you can also find promising research done on Chrons patients. Perhaps this can be of some help. Good luck.

[helixhelix]

These inflammatory diseases are slippery buggers...I found that MTX wonderful initially, but the disease slowly managed to crawl out and start it's attack again. To cut long story short it took a year or so of increasing meds, and adding in new ones till I finally got it back in its box.

But I'm not clear whether you have RA and enteropathic arthritis, or just the EA? As that will presumably affect what meds work for you.

Also stress is a real trigger for flares, so that won't have helped. So I think I bit of deep thought about how to improve your lifestyle might help as well as the meds.

[Bon1 in reply to helixhelix]

Thank you so much. I don't have rheumatoid factor so I guess that makes it EA.

I do keep hearing that areas can trigger flares but I guess I've not paid any attention to that because I've always thought we are a bit quick to blame stress for stuff but it does seem like a big coincidence. I was great all through the summer when I wasn't working...

[helixhelix in reply to Bon1]

You can have RA without the rheumatoid factor. Which doesn't matter hugely except that for you it sounds more important to have a clear diagnosis to guide the right choice of meds. No point upping MTX if it's not actually doing much. Although you won't really know while you're still in n steroids. Anyway, push hard to get mother appointment with someone with more experience.

[earthwitch]

Seronegative enteropathic arthritis is a form of spondyloarthritis. The National Ankylosing Spondylitis Society has a really great helpline for spondyloarthritis, so well worth a phone call to them. Otherwise what I would suggest is that if your treatment isn't addressing the back pain, then insist on having a review by the rheumatologist to review your treatment. Thats especially important if you have been relying on steroids to keep your symptoms down, as steroids are most definitely not a long term treatment option (far too many side effects with the risk increasing the longer you are on them).

As far as the "treatment was working but now its not" goes - spondy has a nasty habit of flaring when you least expect it, and can cause flares even while on treatment, particularly if you aren't on a biologic, which I guess you aren't eligible for at the moment unless a new SI xray or MRI shows up sufficient active inflammation or damage.

[Hidden]

Hi Bon

Stress is a big factor for me, it can cause flares. Having a chronic disease means looking after yourself holistically. We all need to put as much work into reducing stress, getting good sleep, exercise and eating healthily to give our bodies the tools it needs to heal. Medication alone is not enough.

Maybe try some mindfulness each day.

Take care

Kiki

[Hidden]

I don't get many flares .... mini flares mainly. But mini or not (at the moment 'not') I have to fend off the feeling that this is my lot in life FOREVER! The current flare up came hot on the heels of a tremendous burst of energy (relatively speaking), the contrast couldn't be greater. Conversely, when I'm feeling great I'm convinced that'll last too. So far the good times have far outweighed the bad but the bottom line is that flares DO NOT usually go on & on & I tell myself this every day just now.

I have PsA, a spondyloarthropathy. Assuming earthwitch is right about what you have being a spondyloarthropathy, I'd also assume that traditional DMARDs don't cut it, especially for spinal involvement, though they may help a lot with any peripheral symptoms. I really don't know though & the key thing is for you to ensure that you are super clued-up. Could be you'll need to find a different rheumatologist .... just what you need with a heavy workload, but for many of us who suspect we're being under-treated (which would seem to be all too common) a new start with a more proactive rheumy is often the only way forward.

[Bon1 in reply to Hidden]

Thanks again everyone. I feel a wee bit better today and afTer your replies and a LOVELY lady on the NRAS helpline today no longer feel like this is it - forever and ever going to be ill etc!