Hello, I've been lurking for a long time, but after an appointment with the rheumy nurse today I feel the need to join in!
I was diagnosed about a year ago with spondyloarthritis and put on sulfasalazine. I told them months ago it wasn't working, and their reply was to increase the dose to 6 a day. It hasn't made a difference.
When I was first diagnosed the consultant said not to worry if it didn't work, as there were lots of other drugs to try. Today I've been told there isn't, it's sulfasalazine or nothing. I was told to get better pain killers from the GP.
I was so hopeful when I was diagnosed, and that hope has just been taken away from me. Are they right? Is there nothing else? I'm devastated.
xH
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I wonder what has changed. Finances? I would contact NRAS witih your experience, Victoria sent me some very useful advice when I was formulating questions to my rheumy's latest treatment plan.
I think Cathie's suggestion to call the help line is a good one. I have RA, not spondy, but thought that the anti-tnfs were effective for you as well. And they are expensive, but that shouldn't be a reason not to give them to you if Sulpha isn't working. So start nagging, and insist on seeing consultant if you can to get a proper explanation. Good luck. Polly
That is so totally wrong!!!! If you have spondyloarthritis, then once you have tried NSAIDs at full strength (or skipped that if you can't take them because of gut problems) then you should be able to try anti-tnf drugs, which can be real miracles for spondyloarthritis. Sulfasalazine and Methotrexate can have a bit of response for peripheral arthritis and psoriatic arthritis, but generallyt won't have any impact on spinal pain or disease. They don't work the same way as they do for RA where they really are disease modifying drugs. You do need to make sure your disease is under good control as if it isn't, then you are far more likely to end up with severe or permanent disability from fused spine and ongoing inflammation, as well as other effects of uncontrolled inflammation on your body.
You need to really insist on a second opinion, or insist on GP referring you to a proper spondyloarthritis specialist of clinic and not just a general rheumatologist. Check out the National Ankylosing Spondylitis Society (nass.org.uk, I think) and phone their helpline to see who you should be seeing in your area. If your GP won't help, then get onto PALS and make a complaint that you aren't receiving adequate treatment or follow up.
I have undifferentiated spondyloarthritis and I know how difficult it is to fight for good treatment in the NHS - its taken me 7 years so far to even begin to get anywhere. I found a couple of international support groups (that have a lot of UK folk on) an absolute lifesaver for me - loads of absolutely excellent information as well as reassurance that I wasn't going mad when like you, I kept getting told that the NHS couldn't give me anything other than pain relief. If you google "ankylosing spondylitis forum" then two main ones come up - one is KickAS and the other is the spondylitis association of america. Don't be put off by the american base to them - they really are international. I prefer the SAA one at the moment, but the KA one has a lot more advice on things like diet and alternatives.
Just to note though, an RA nurse (or even a general rheumatologist) aren't always the best folk to give advice about spondy - most of them just don't seem to realise that its a completely different disease process with different areas around the joints being affected, and a different treatment plan needed. You do need to get under the care of a consultant or clinic that specialises in spondyloarthritis.
Thank you all for your advice. I didn't know there were spondyloarthritis specialists! It took me years to get a referral to a rheumatologist.
He doesn't know if it's AS or PsA, in fact he said he was leaving the diagnosis vague specifically as there would be more treatment options.
I did mention today that I was worried about long term damage, and I didn't get an answer.
I think it's largely because I'm 32 and don't have children. He's mentioned before that that is the issue with methotrexate. Not wanting children isn't a good enough answer.
The nurse is sending me for an injection into the hip under ultrasound, I had to ask her to slow down and explain it to me, as I only caught the words 'radio' and 'injection' the first time. I still don't know what it involves. Is there anaesthetic? Does it hurt? How long does it take to work and how long does it work for?
She's also referring me to physiotheraphy, but I don't know anything about that either. Other than that, it's just up to me to get better painkillers from the GP.
I wasn't sure if I should be asking NRAS or NASS. Just feeling a bit left in the dark and a bit hopeless at the moment. I was so happy when I got a diagnosis (that might seem a bit strange!) as I thought that meant that we knew what to fight and there was a chance of improving. I don't really feel like I've dealt with the negative side of the diagnosis, until now.
It's good to get it all out there to people that understand! Thank you xx
If he doesn't want to put you on MTX because of the pregnancy risks, then ask why he isn't giving you anti-tnfs instead? They are quite safe to be taking if you are childbearing age.
You will need a concrete diagnosis for eligibility for anti-tnf treatment, so it might be worth really pushing the rheumatologist with questions about whether you actually meet diagnostic criteria for either AS or PsA right now, and if you don't, what more would need to be shown, and whether any further imaging would help. It does seem that there is an incredible reluctance from the NHS to formally diagnose spondyloarthritis, (but will diagnose RA OK) and I can't help wonder if its about money - RA has a lot of very cheap treatments available, whereas spondyloarthritis jumps straight from NSAIDs (which most folk can't take for more than a few years before it causes too many gut problems) to anti-tnfs that are very expensive.
who ever said , it's sulfasalazine or nothing ,, is talking rubbish ..
i would listen to earthwitch ,, she knows her stuff ,, call the nass helpline too ,, one thing im sure , youll be advised to do is to push for a mri scan , this is the only way a correct diagnosis can be made for spondyloarthritis , or will surely help .. once a diagnosis is finally made then a start for the right treatment can start , dont let them fob you off with painkillers ,, this is what happen to me for 6 years or so ..
hopefully now ,, you wont feel so much in the dark ,, believe me when i say talking to other people can so much help you ..
Thanks Andy. I had an MRI in September last year, it showed changes to the sacroiliac joints. The nurse said the next appointment with the consultant will be in two months. Hopefully the GP will give me better painkillers in the meantime, I've only had ibuprofen and cocodemol so far.
the injection is probably a guided injection ( that's the radiography bit) into the joint. It'll be a steroid probably, and so should last a while. They usually freeze the area they're injecting into, and it doesn't take long. A bit uncomfortable rather than excruciatingly painful. But really should get better NSAIDs from your GP. a lot of us find that we have to be a bit more pushy than we'd naturally be to get proper medical treatment, so get pushing! Polly
I need to explain more about NSAID treatment for spondyloarthritis.
Ibuprofen is used by most people as a mild analgesic (pain killer) but actually its one of the NSAIDs (non-steroidal antiinflammatory drugs) and as such is incredibly effective in a lot of people for spondyloarthritis inflammation. Its one of a large group of NSAIDs, and not all of them have the same effect on everyone, so you might have to try more than one before you find one that works. NSAIDs are the first line of treatment for spondy, but where a lot of folk go wrong is they only use them "when they need to for pain", and actually that just doesn't work. You need to be taking them regularly at full strength (which is usually more than the over-the-counter doses) - just like you would take a DMARD for RA. So if you have been prescribed them, do take them regularly, and you should notice the effect a lot better.
If you have stomach problems with them, don't put up with that. Get straight back to GP and ask for a stomach protecting drug to take with them (omeprazole, ranitidine, or something like that). If that doesn't work, or you don't think you are getting good enough effect with the first NSAID you try, ask to try a different one...... and then another different one....... some of us go through four or five before we find one that suits and we can tolerate. If at the end of trying four or five, and either they have not enough effect or you have gut problems that aren't controlled with stomach protecting drugs, then the next step is to really push for anti-tnf drugs. If you have sacroiliitis showing on imaging then you should be eligible for them.
To know if NSAIDs are working - you should notice significant improvement within 24-48 hours of starting to take them (at maximum doses), and if they are working pain usually returns significantly within 24-48 hours of stopping them.
The other, but very much second best option and only for short term treatment, is steroids -either short course of tablets (often 15 or 20 mg a day, sometimes tapering doses) or by injection. Steroids work easily as well as NSAIDs, but they are not a good solution long term as they can cause some pretty bad damage (particularly osteoporosis, and affecting the function of your adrenal glands). With the way bone damage happens in AS or spondy, adding in osteoporosis into the mix is not a good idea, as you become far more likely to do serious damage if bits of syndesmophytes or osteophytes break off. Three or four very short courses of steroids a year (one to two weeks) is pretty much the maximum that most doctors will prescribe, some a lot less, or a total of 3 months at lower doses, or a couple of steroid injections. Steroids don't "cure" spondyloarthritis, but its worth keeping at the back of your mind if you do get a flare up that you can't cope with easily and need to knock back. I find steroids a lifesaver if I am having to travel long haul flights (eg to the southern hemisphere which I do from time to time), or if I've just got to the point where I really can't cope at work at all because pain and inflammation has built up so badly. A short course or an injection will give me a break and get me back to square one again and keep me going.
From stuff my physio told me and also from knowing two men with AS - I believe phsysiotherapy, if its good, is one of the best things for spondyloarthritis. I know someone who suffered from JRA as a kid - or so they thought - and who was then diagnosed with AS instead of RA when he was in his 30s. Since the diagnosis he has chosen to come off all drugs and uses exercise, Alexander technique and swimming and much else to keep on top of his condition. He does also live in Australia although he'd originally from Orkney, and he has loads of theories about DMARDs and so on. But when I told my physio about him she said that it may just be that because he has AS and it's one of the spondies that responds best to exercise and physiotherapy. So I would recommend you try this for certain and hope it's really good for you at least. I think you will have to pester your GP to find an expert in Spondyloarthritis because it seems many rheumatologists just don't know enough about it. Tilda x
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