Ankylosing spondylitis - advice for a friend

[ShadowsShadowsEverywhere]

My very lovely friend of 15 years has been diagnosed with this condition in the past few years, he is 23. His dad has it so they think in his case it's hereditary.

He's in a considerable amount of pain on a daily basis, I'd say he's struggling to cope. He has been trying to research the condition and find any info he can so I thought I'd ask on here as MN can be such a fount of knowledge! The meds he's on no longer seem to actually help with the pain. He went vegan a few years back partly because he had heard it might help, but I think as he was already vegetarian he was heading towards a vegan path anyway. I need if pos info on things that may help, pain management, some clued up info on the drugs available etc. I was wondering about a tens machine?? I know that can help with general arthritis, no idea if it would make any impact here though.

Tia for any responses.

Needs to discuss with rheumatologist. Physio and NSAID drugs are the mainstay.

Hi
Sorry to hear about your friend.
I have this and the previous poster is right about exercise and nsaids being the main treatment for a start. It took me the best part of a year to find the one that helped me. Pilates helps me keep moving and walking, cycling and swimming is recommended. An older AS sufferer have me some advice which was don't rest, keep moving, she didn't and now she is really bad. It has so many other symptoms like fatigue and depression. It is hard but take each day and find a good rheumatologist, they are invaluable. Xx

Is he a member of the NASS national Ankylosing spondylitis society?

I believe there's research (verified) on a starch free diet as they've linked a type of bacteria to increasing flare ups. The NASS also has a really good set of video exercises to do and lots of advice. Plus it seems you can get referred to a residential clinic in Bristol to learn how to manage symptoms and flares.

I've got AS. I agree that it's mostly a case of NSAIDs as (and other re painkillers to go with them) and exercise. There are other drugs that a rheumatologist can prescribe if there are concerns about fusion in the joints - his rheumatologist will be able to advise.

The physio will probably tell him to try to do 4 hours of cardio exercise a week (that's what I was told), as well as pilates/yoga/tai chi type activities (which help to maintain your flexibility). I can never fit in the 4 hours a week with a FT job and a family. Low-impact exercises like swimming (front crawl and backstroke rather than breaststroke, which puts more pressures on the bits that hurt), and cycling are usually recommended for people with AS. Apparently the cardio exercise helps to reduce pain, as well as helping with everything else.

The fatigue doesn't make the need to exercise easier!

If he's gone vegan, he should get his GP to check his iron and B12 levels. These can be a bit of an issue for people with autoimmune conditions even if they eat lots of red meat. Low B12 and iron can make the joint pain and fatigue worse.

The clinic I mentioned below might be in bath, can't remember!

I can concur with low ferritin causing muscle issues; it's been really debilitating for me.