Ankylosing Spondylitis or Psoratic arthritis along with a bit of Iritis..

[Handsup]

I was diagnosed with Ankylosing Spondylitis after blood tests showing up the HLA B27 gene in conjunction with an attack of iritis and lots of joint pain from the lower back, knees and heels. I also get a small patch of psoriasis on my elbow (not bothersome).

I've been taking Neurofen on and off for a couple of years but the pain and fatigue is now becoming overwhelming. The rheumatologist offered the more advance drugs but the side effects sound really unpleasant and the thought of my immune system being suppressed worries me as I've glandular fever in the past and I've felt lowish ever since.

Has anyone here had the condition? What options/ drugs have you taken?

I have probable psoriatic arthritis possible anklosing spondyltis[Jang. I have had back pain most of my life, upper back but started getting hand wrist finger toe pain about three years ago. Since then it has progressed to ankles, knees, elbows, jaw to varying degrees.I have almost constant sacrolilliac pain.

Sounds grim but I started on sulfasalazine and max dose celebrex which really helped for a while. I now take those plus methotrexate 25mg weekly. This combo has everything except back pretty much under control. I've just had an mri and my understanding is if back issue is shown to still be "inflammatory"I may be offered the anti tnf drugs.I used to think they were too scary but now I will grab with both (achy ) hands.

I find there is an almost perfect correlation for me between the disease getting worse and my readiness to try the scarier drugs. I'm not ready to give up yet!

It's no fun but there are some effective treatments about once you get your head around them. good luck

Thanks for the reply. I've just googled Sulfasalazine and it seems less 'hard core' compared to the methotrexate - I'll ask my GP about it.

Before this diagnosis I was miss natural, rarely took a paracetamol and now it seems the future is going to hold a medicine cabinet full of drugs

Dh developed bad PA very suddenly. He took the methotrexate despite his concerns because the pain killers didn't seem to help at all. After around 6-9 months he was able to stop taking the methtrexate and has been ok since. If he gets unwell the pains can start again but so far they've quickly disappeared again without having to go back onto them.

A friend of mine was diagnosed with AS after a bout of iritis and later went on a residential course at Bath Mineral Hospital to learn how to manage the condition l

Posted too soon... learn how to manage the condition long term. Might be worth looking into?

sulfasalazine is a good start and who knows might be all you need? to be blunt, natural approach is all very well but I want too keep this disease at bay. Don't rule out medication with proven benefit too quickly

Don't worry denialandpanic my tree hugging, natural approach days dived out the window a long time ago . On bad days - I'll take anything so long as the side effects are not worse than the condition itself but you seem to be managing well which is good to hear.

Smorgs - I'll have a google about the course. Thankyou.

I know someone with AS, I am not sure what medication she uses just that it involves injecting it every day. Sounds awful but she cannot function without it.

I might be wrong, but having the gene doesn't necessarily mean you have AK does it? I only say this as my husband (who has chronic back pain and other symptoms of AS) tested positive for the gene, but then discovered he doesn't actually suffer from AS. In that interim period he did a lot of research and realised he was in fact eating a diet very high in starch. There is some research to suggest cutting starch out of your diet is a way to reduce symptoms. Just google the key words and a range of websites will come up. I think I/we found kickas.org the most helpful. Good luck :)

Hi buffers, no the gene doesn't necessarily mean AS but because I've had 6 attacks of iritis and chronic joint pain the rhematologist said it's probable.
I've done the no starch diet and it definitely improved symptoms but didn't eradicate. I can no longer eat pasta, pizza or too much potatoes because the stiffness increases.

Something like 90% of people have the gene. An MRI is needed to disgnose AS.

DP has it and has done for years but was only recently diagnosed. He isn't taking medication yet but was recently given steroid injections with a CT scan for guidance. They have improved his pain, movement and morning stiffness.

I've told him about the starch free diet but he's too lazy

I've had many, many bouts of iritis over the past five years, had all the investigations but am currently classed as idiopathic as, despite a lot of general achiness and back pain (SI and sciatica), nothing's showed up. And I'm HLA B27 negative .

I am making radical changes to my diet after reading more and more about chronic, systemic inflammation and wheat and sugar. I see you've tried reducing starch - would you consider an elimination diet? Something like a Whole30? After all, if it has no effect, it's only thirty days.

I never usually make it past the 5 day mark because I end up so shaky and hungry.
I have a really fast metabolism (8.10 stone) but with a huge appetite.
The diet eliminates most grains, potatoes, bread, rice, cereals and certain veg, fruit and sauces. After a few days of fish and salad I ended up very cranky and emotional - i just needed a bit of stodgy food to calm me down.

I have AS and have never been tested for the HLA gene. I take sulfasalazine and hydroxychloroquine which mostly keep the condition under control.

It's very important that you take medication that will actually help fight the condition otherwise the inflammation does more damage. The generally unwell and low feeling you describe is all part of the illness and you will hopefully start to feel better once you start treatment.

With the immune system being suppressed, it's best to have a flu vaccine and avoid anyone who you know has a cold or other virus. I always wash my hands before eating anything too.

handsup it does get a bit depressing picking up a carrier bag of meds from the pharmacy monthly at the pharmacy in your thirties but I actually found the despairing what the Hell is going on pre diagnosis days a lot worse.I thought I was going mad. It's annoying that the disease keeps sort of running ahead / breaking free of the meds but I'd hate to think what I would be like without them.

I think I'm hla negative.they mentioned it was being tested fir but I don't remember hearing or setting a result. I have some tiny patches of psoriasis and so far no radiological damage suggestive of full blown as hence my might be one might be the other but definitely along those lines diagnosis

I'm on anti TNF for Crohns. It's been life-changing. Pm if you want more info about it.

I've got AS and tested positive for the HLA B27 gene, and have had numerous bouts of iritis. I was off all meds while ttc, pregnant and bf and found the only time my symptoms improved was during pregnancy (but can't stay pregnant forever!)

I've tried just about every anti-inflammatory going as well as sulfasalazine, but have either not been effective or the side effects were too much. I'm back at the rheumatologist next week and she wants to try methotrexate. I have had hydrotherapy which does help me, especially if starting to have a major flare.

I have tried the diet but like you always cave after a few days because of the shaky feeling (I need carbs!), so just try to reduce rather than eliminate.

Honestly that just sounds like carb flu, which I promise is temporary.

If anyone is interested, I have a collection of articles about diet and inflammation on Evernote - would obviously need to be emailed but I'd be happy to discuss via pm.