Recently diagnosed with ank spond, a rare form of arthritis—have lots of questions about how others are dealing with it.

[sumalingum]

Hi just got diagnosed with what doctors are saying is a race form of arthritis, they don’t know what causes flare ups, have given me medications but no suggestions for what is going to happen when the meds run out in a few weeks. I don’t want to be on meds all my life. Curious to hear how others are dealing with it.

[Katerina1]

Hello, my partner has been living with ankylosing spondylitis for many years. He doesn't take any medication for it apart from paracetomol. He often complains about flare ups of pain though. I think the condition is different for everyone - he has become a bit hunched at the top of the spine. Physios (here in UK) check his movements annually and are generally pleased. Regular swimming, three times a week, seems to have been helpful. Good luck.

[sumalingum in reply to Katerina1]

Dear Katerina, I meant to respond sooner but had forgotten which channel I had posted on, now finally checking this so apologies for the delay.

I would love to speak to your husband about how he is dealing with it only with paracetamol. I was on naproxen until a few weeks ago when I ran out and have been trying to get more from my GP (rheumatologist offices are closed, can't get a hold of them via telephone). The naproxen hadn't been working great anyway, and someone in another forum said the NHS covers biologics, which is what she is on. I was told by my rheumatologist that the NHS did not cover it, and it was expensive so I had lost hope, but I'm encouraged now that I know it will be covered and I just have to fight harder, I suspect.

I try and exercise when I can, walking mostly - and do stretching when I must (when the pain is severe and I can't go to sleep without stretching for 10 mins).

[Katerina1 in reply to sumalingum]

Hello Xenoach, my partner hates to take medication which is the reason for paracetomol only. Doctor warned him that naproxen or similar meds can cause damage to your insides. He does complain every day about being in pain but refuses to go for anything stronger. He does the stretching and neck exercises every day. Unfortunately no swimming now due to the virus which has resulted in increased pain. Walking every day but he thinks it might make the pain worse. His neck is quite bad at the moment. Our local rheumatology dept (NHS) do use biologics but only in extreme circumstances. I looked up the side effects and they can be considerable. Have you looked them up? Rheumatology here are overstretched so they no longer see my partner, just a physio appointment annually to check movement measurements.

Sounds as though you are suffering badly to be considering biologics. I'm not sure whether they can be taken long term. Unfortunately non of the conditions treated by rheumatologists can be cured and our ones here say they don't treat pain and treatment is to help minimise the disorder.

I wondered whether you have considered a referral to a pain clinic.

[sumalingum in reply to Katerina1]

Naproxen does have side effects that damage the lining of the stomach - I have not been given any other meds but I need to inquire with my GP is that is needed. I had not explored the side effects of biologics but it says it could be mild discomfort around the injection site--have you found anything more serious, I'm curious to know. An annual physio check for your husband seems not enough - I need to be seen by a physio every 2/3 months. I have not considered a referral to a pain clinic, but that seems a bit like giving up, no? The past few days have been better for some reason, let's see how it goes.