[Closed] Ankylosing spondylitis and IL17 inhibitor

Might want to read something like this to give you a sense of what you need to know when you chat w the nurse
IANAD but from some work they are changing treatment of AS
https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-020-02208-w
https://www.the-rheumatologist.org/article/interleukin-17-inhibitors-promising-in-ankylosing-spondylitis-patients/

Thank you. I’d read the first article but the second provides a good overview.

It’s a new treatment so appears dosage varies a lot.

Unsure whether this is a long term treatment or early acute stages?

I cant tell you anything about treatment as i am not on any. I was diagnosed by chance about 10 years ago. I used to wake up with a sore lower back for a when so we bought a new mattress but still had the issue. Had problems with my neck, turning/looking over my shoulder reversing etc that I put down to an old sport injury. Was lethargic in the afternoons that I put down to young kids/work etc. Then one day I got Uvitis and was sent to the eye clinic where the Doc asked if i had back issues. When I said I did he sent me for xrays and blood test which showed the hla b27 and the xrays showed wear on my hips and neck and he diagnosed ankylosing spondalytis. I did physio for a bit/went to rheumatologist etc but as my symptoms were not too bad I was never really medicated (occasional arcoxia, steriod,asacol). A year or 2 later I got colitis (apparently it's all connected) and lost a lot of weight. I found this weight loss along with regular exercise and laying off excessive alcohol have really helped me and i find I get worse/stiffer if i don't exercise/cycle so keep moving helps me. I walk with my arse sticking out, get tired in afternoons and struggle to get my socks on/bending (i really should do yoga) but other wise I have been fine, just the odd flare up. We will see how it progresses over the years but so far I have been lucky compared to many others with same diagnosis.

Hope you get sorted.

Mrs Seadog has suffered with this since her mid 20's. It's very unusual for women to suffer from this, indeed that's why it took about 3 years for her problems to get diagnosed. Luckily, though in women it's less severe also.

She coped without any medication for years and only in the last few years as progressed to self injections every 2 weeks. The prescription for which changes every now and then as the body builds up tolerance to the drugs.

Exercise, based around stretches and mobility, have always helped. As well as avoiding inflammatory foods. It's made worse by stress and tiredness, and any times when the exercise regime is lost.

I appreciate that her symptoms are much easier to deal with, so listen to the experts as IANAD...

Thanks everyone for the information and experiences.

I’ve dealt with the symptoms of this for a while now and can’t remember the last time I had an unbroken night! Feeling hopeful for this treatment as the rheumatologist felt that it should make a huge difference 🤞🏻

No experience of those injections but I use Humira (brand name I think) every two weeks. Really helps me but as mentioned above, stress does you no favours - my pain increases with workload (partly because excercise reduces).

Sit stand desk if you're a desk jockey. Lots of short breaks. Flares still happen (by that I mean worse that usual pain) without pattern but gnerally under control. I never tried yoga or regular stretching but can clearly see the benefit of doing so - I have limited flexibility now - even feel it getting on or off a bike!

Thanks @cb I think the consultant initially suggested what you’re on but as I’ve recently had cancer (just to throw that in to the mix 🤦🏼‍♂️) they’ve gone with the IL17 inhibitor. Effectively the response is the same I think so that’s really positive that it helps you and you feel the benefits.

I agree with all posts that I will try yoga and stretching too, for brain and body.

@andy4d

Do you get regular flare ups of uvitis?

Ive have had uvitis a load of times and tested B27 positive, I get regular flare ups of it. I was asked if I had back problems and it’s linked to Ankylosing spondylitis. I do now but didn’t back when I first got it 6 years or so back so I’ll mention it when I next get an eye flare up.

Just wondered on whether you still get the uvitis flare ups?

Thanks

OP - sounds like you've had a shite time of things. I would say that as long as you keep on top of the AS, it shouldn't stop you doing things that you enjoy. Hopefully you have been assigned a specialist nurse as I found that contact the most helpful and accessible. All the good staff around here have jacked it in due to stress and work levels so I'm currently in a bit of void trying to work out who will be my new contacts!

I forgot to mention the uvitis (iritis) that has been mentioned above by others. That's a real pain in the arse (eye!). If you get reddening and soreness in the eye (one or both) - get it checked ASAP. There are eye clinics scattered around (Manchester eye hospital being an example) but go to A&E if not and ask for the registrar (think that is the term) responsible for the seeing bits. Important to get on the steriods ASAP - if you do have an incidence of this, the pupil dilation drops make a drive home in the dark and rain an interesting experience! Go in the day and take sunnies...

Yeah if you get signs of uveitis get it checked ASAP. As mentioned above I get it pretty often.

So you guys who have been diagnosed with spondylitis and being treated for it , do you still get the eye flare ups? I must get it probably every 3 months and it's a proper pita.

@J273

Thankfully I only had the one dose of uveitis many years ago. However I now suffer from CSR in one eye which i was told is not connected to any of my other issues.

J273 - I get the iritis on average I'd say every six months. Rarely both eyes at the same time, although I tend to use the steriods in both just in case!

Thank you for the comments all. Thankfully my eyes are good at the moment and hopefully a decent specialist nurse will make things straightforward!

Stay well!

Cjr, mrsmf has AS. Not on the treatment you are recommended though. Hers is managed with regular anti inflammatory painkillers, constant daily dose. No injections of steroids yet. She does have stronger painkiller tablets if it flares up.

Exercise is the real magic that keeps it at bay in her case. Staying regular with workouts seems to be the thing. She does some yoga as well. Keep the joints moving and mobile.

Thanks @mrmonkfinger good to hear that exercise has such a positive impact. I’ve been trying to learn the subtle art of pacing myself and exercising consistently…still working on it!

I was diagnosed in my early twenties and prescribed naproxen, take 3 a day and it keeps it at bay along with as much exercise as possible. Walking is especially beneficial and seems to loosen me right up. Alcohol makes it much worse so I barely drink. I work shifts and nights/tiredness definitely make it worse. Had some horrific flare ups over the years.

I was getting uveitis every 6 months or so for years but haven’t had a case in years now after losing weight, getting fitter and exercising more. A mate described me as the bus from Speed, you just have to keep moving as much as possible.

Brief update just incase anyone is interested:

Been through the gamete of chest x-rays and blood tests and all fine, so receiving my new Secukinumab treatment next week. Really can't wait to get started as know the evidence for positive results is strong.