Anybody living with ankylosing spondylitis pain? Need coping advice.

[sumalingum]

I had written about my ankylosing spondylitis a few weeks back and someone responded back saying their husband has been living with it for years. I have now lost that message and can't find her anymore--I need to find out more about how they are living with so much pain and how they are coping with it with meds. I have stopped going to my physio because they closed shop after COVID, doing bits of exercises at home but the pain is getting worse, living off of OTC painkillers right now. Any help?!

[Hidden]

Hi, I have AS. For me I find heat works best as extra help when it's particularly painful. I know some people prefer ice though so try both!

Are you not under a rheumatologist or can your GP prescribe something a bit stronger? I am on a biologic but is still take 1 naproxen a day as it helps the peripheral pain.

You sound like you've just kind of been left with it. Are you a member of NASS? They have some useful info for free on their website. Just Google NASS.

Finally there are a few of us spondies over on the NRAS board so if you haven't already then join that board as well. We don't really have a proper place on here as there is no AS board!

[sumalingum in reply to Hidden]

Jnmmum, thanks for your reply. I ran out of my Naproxen, I had been taking 2 a day. After I was referred to a rheumatologist he did recommend biologics but said they weren’t covered through the NHS—do you know how I can be on them? He had said AS could be cured using biologics. I’ll call my GP and ask for another referral. I’m on the NRAS board as well, posted there. I’m not a member of NASS, I’ll check them out. Thank you!

[Hidden in reply to sumalingum]

Hi!

Biologics certainly are covered by the NHS! I would definitely get back to the GP and ask to be referred again if you have been discharged from rheumatology.

The criteria for biologics is to have "failed" 3 other medicines - for me this was Naproxen, Arcoxia and Ibuprofen - i.e. they did not bring enough relief. Some people go on DMARDs but I was personally never offered these.

For myself, I had an MRI that showed widespread active inflammation and I was advised to start biologics ASAP. Once you have been recommended for them your rheumatology team will ensure you meet all the necessary criteria.

The biologic doesn't cure AS - unfortunately at the moment nothing does, but it aims to slow down progression. In some cases it can slow it down so much that you are basically "in remission" but you will never be cured.

I take Cimzia - it took a good 6 months before I felt any benefit, but some people find it works much quicker. There are about 4 or 5 anti-tnf biologic drugs and then a couple of other biologics that work by inhibiting a different part of the immune system, I think they are called IL something but would need to check. So this means if your first biologic does not work you still have other options and you are entitled to try them so don't be fobbed off with just one! It really has changed things dramatically for me - my main issue has always been debilitating fatigue rather than pain and it has helped a lot with that. I do still have flares, but they are less frequent and they do not last as long.

Healthcare @ Home will deliver your biologics and a nurse will visit twice to show you how to inject them. It is very simple - I have the auto-pen style injection. You just press it down and in it goes. You very quickly get used to injecting yourself and learn the "tricks of the trade" to make it as painless as possible. If I get the "sweet spot" I don't feel a thing!

Before you start, you will need to have bloods and a chest x-ray done. This is to uncover any underlying health issue and the x-ray looks for active TB. I was found to have latent TB so I had to take very strong antibiotics for 3 or 6 months (I can't remember now - I do however remember that there was a combined pill which the NHS had run out of so I have to get about 10 pills down me a day!) but I was allowed to start the biologic before I'd completed the antibiotic course.

Some people are more prone to infection on biologics but I have found I seem to get less. I've been on the jabs for almost 2 years now and in that time have only had to suspend taking them once when I got a dental infection.

In the meantime your GP should be able to prescribe more naproxen for you - do you also take something like omeprazole with it? Arcoxia is supposed to be easier on the tummy. I found it controlled the pain better than naproxen but I had very bad tummy trouble with it!

HTH! K

[sumalingum in reply to Hidden]

Oh bless you--thank you so much for taking the time to respond. My rheumatologist said it would not be covered, so I took his word for it. I had gone to the pharmacy for my naproxen and they did ask me if I had been taking it for long and if I took anything for my stomach for it, I did not. I will call my GP and ask for another prescription of it--how long did you take it for before you decided it was not working? I find it hard because sometimes it feels like it is working and my pain is minimal. But some days I wake up with excruciating pain (or can't sleep all night because of it), and after a good painful stretch in the morning can finally move about, even while was on naproxen. Also, do you track what makes your symptoms better or worse, and do you keep tabs on flare ups? I know heat makes it better for me also, but sometimes I heat the room so high my wife wakes up sweating so I have to turn it off. It is very difficult not knowing what helps.

[Hidden in reply to sumalingum]

Hi,

I actually refused the biologic at first as I'd had 25 years of being told there was nothing wrong with me so to suddenly be told I had AS (which I'd never heard of!) and that I had to inject myself twice a week was a bit of a shock! I asked if I could read up all the leaflets I was given and find out a bit more about it.

The naproxen did bring relief (the change once I started taking it was astounding), however, my rheumy told me if I didn't take the biologic I would be fused in 5 years, maybe 10. I was 44 at the time and my kids were 10 and 13 so 5 years, 10 tops was not a good way to be going. In the end after reading about it all I decided to listen to the rheumy and take the biologic as it's the only medication proven to stop the progression. So it wasn't really that the naproxen didn't work, it was more that the inflammation was so bad and I was at the point where they could start to see changes to my spine. Once you fuse, you're fused - they can't really undo it without some very major surgery which is not guaranteed and is fraught with risks so it's only done in really severe cases.

I've never found any rhyme or reason to my flares - prior to medication I was flaring pretty much constantly! I know some people believe diet plays a part, but I was actually on a gluten free diet immediately prior to diagnosis and I looked extremely ill and felt much worse than usual. You kind of try anything really when you have these unexplained issues that doctors are telling you are all in your head! The only supplement I take is vitamin D - this is because I had tested as very low and so was initially put on a very high dose, but also once you have confirmed latent TB you are told you must keep your level up as there is evidence that people deficient in vitamin D are more likely to develop active TB.

I find I get really hot in bed so I insist on the lightest duvet possible - my poor husband feels the cold and wants the winter duvet on but I can't bear it! I got a sort of chair heater thing from Lidl - I rest it against the back of the sofa where I sit and plug it in and it heats up - that is very useful. I also use those wheat bags you can microwave if there is just a specific place that hurts and I don't want the heat all over my back. Very bad pain will get the hottest hot water bottle I can stand.

The NASS website has info on the stretches they recommend to keep mobility. They also have a network of classes where you can meet other people with the same condition and maybe do some pool work or other exercise specifically for AS. My nearest class is about 25 miles away so I have not been to it - hopefully they will set up one closer to me as the road to it for me is not great on a winter's night!

K

[sumalingum in reply to Hidden]

Thanks K--I can attest to the relationship between Vitamin D and lately TB turning into active TB--I did tuberculosis research in graduate school, and there is some correlation there, so glad you are taking vitamin D.

What do you mean "I would be fused in 5 years"--that sounds scary. I'm 36, and until before the diagnosis used to think there isn't really anything wrong with me (and that the back pain is a "usual" side effect of growing beyond 30--I was wrong), but having a fused spine sounds scary at whatever age it is. Besides the heat, I have not found anything helpful--I have experimented with exercising a lot, various diets, hot/cold packs, supplements (I still take multivitamins daily), but have not had any dramatic effects. I did notice the naproxen helped significantly, it had been years since I had not woken up with back pain and with the naproxen suddenly I was waking up with no pain in the mornings.

The NASS website seems to be very informative--are you a member? I'm thinking of signing up, have you found it useful?

Cheers!

[Hidden in reply to sumalingum]

Hello!

The fusion is what happens eventually with AS. Don't panic! Not everyone fuses and the drugs available nowadays can delay it for your entire life in many cases.

My layman understanding of it is that there are kind of 2 phases - the inflammation phase where you get the pain and then the "repair" phase. The body thinks it has to repair the damage inflicted (by itself! So way to go body!) and it starts to grow extra bone - these are known as spurs. If they continue to grow then eventually they will join together, like stalactites and stalagmites as it were and then you have fusion as 2 separate bones in your spine have now fused together becoming one. In the worst cases this happens along the whole spine from the base at the sacroiliac joints to the neck. It results in kyphosis where you become hunched and can't raise your head up. It also means you are now more fragile - your spine is made of a number of small bones for a reason and once it has fused all the way you basically have just one whole bone for a spine.

*This is a VERY WORST CASE scenario - it does not happen to everybody!*

Some people fuse in one or two places, others never fuse.

The biologic drug slows down this progression and can slow it to such an extent that this will never happen. This is also why it is important to keep moving and exercising as joints that are moving a lot don't have so much chance to fuse. The Catch-22 of course is that when you are in pain and are stiff it is difficult to get moving and exercise!

I am a member of NASS. They send you a little magazine twice or maybe three times a year, you get access to the members area where there is a forum (it's not widely used, but if you ask a question on there someone will answer it / be in the same situation etc. There is also a helpline which is great. When I first started my meds my hospital told me I needed to get them insured on my house insurance (turns out that is not easy - the meds aren't medical equipment but they are also not food which is generally what you'd keep in your fridge so what do you insure them as?!) I asked the helpline about it and they were appalled I'd been told to insure my drugs in the firist place and contacted the hospital about it. The hospital had to back down and admit it isn't actually policy to ask patients to insure their meds! They also lobby on behalf of patients in general and have a big initiative going at the moment aiming to reduce the lenght of time taken to get a diagnosis (currently an average of 8 years).

Getting back to the actual AS, I didn't really wake with back pain. I had the pain in my hip, always left side. It got to the point where I was so stiff in the morning I would literally roll out of the bed, which I put down to age (I was 40!) If I stood for any length of time in a queue for example, I would get a really intense pain in my lower back and become very stiff. Because all these things went away once I got moving (classic symptom!) I never even mentioned any of this to the GP. I always complained of fatigue and aches in my knees, neck and hands. I had dozens of blood tests that always came back normal. My GP did eventually ask me if I ever got back pain and when I described it he did the HLA B27 test, which proved positive and was enough with my symptoms to get a referral to rheumatology. Only took 25 years...

What was the process you went through to get your diagnosis? Have you had x-rays and MRI scans? It's very strange to be diagnosed and then discharged from the hospital as it is a chronic condition!

To be offered the biologic you have to have active inflammation and have failed 3 other drugs (as I posted previously). They are expensive - I think it's over £10,000 a year - but the NHS DOES cover it. I think it may be a good idea to obtain a copy of your medical notes - you can get copies of the letters the specialist sent to your GP as well - so that you can see exactly what stage you are at. There is a good group on Facebook called Ankylosing Spondylitis Support Group UK - the cover photo says Shine a Light on Ankylosing Spondylitis. There are some very knowledgeable people on there that know the correct process for every stage of your medical journey. There are also some argumentative old so and so's but isn't there everywhere?!

Hoping I've not panicked you too much! K

[sumalingum in reply to Hidden]

Thank you K--I don't use FB but I will become a member of NASS, it sounds useful. The spine fusion things does sound scary, but hopefully with regular movement / exercise and perhaps the biologics I don't have to go through it.

The diagnosis for me also took a while, about 10 years (this started around 2010)--at first I thought it was due to my squash injury (I had minor injury playing squash and I stopped playing). I went to physios (this was in the US)--some said it could be sciatica, some said my one leg is shorter than the other, some said I needed to reduce my belly and that my abdominal muscles were weak so I needed to strengthen those. I did almost everything suggested, still the pain stayed.

I moved to the UK 4 years ago--and started seeing the GP about it. They asked me to take painkillers and come back if the pain got worse. At first I could not tell, if I tool paracetamol and ibuprofen combination it felt better, so I did not go back. I got referred to physio a few times here as well, and they kept making me to the same kinds of exercises as I had done in the US, which helped to varying degrees. Physio appointments was capped at 3 visits (you had to pay for more visits) so I stopped going after 3 sessions. Then last year I got private insurance through my work and they covered physio appointments. So I went and immediately the private physiotherapist said I might have arthritis - they referred me to a specialist (neurologist) who did an MRI and told me I have AS. Then he referred me to a rheumatologist who gave me naproxen.

I think I'll ask the GP to write me another prescription of naproxen and try it for another month (I don't want to get an ulcer either so don't want to be taking it for ages) - if it continues to not work, I'll request something else (I have tried ibuprofen). Hopefully that'll work. If it does not, that will mean I'll have failed all 3--at which point I hope they refer me on to biologics. Injecting biologics does not sound great although much better compared to the alternative of having fused spine.

Is there a way to track flare ups? Maybe I'll do a bit of research on what is known about flare ups so far. It's frustrating to know I'll be living with this thing for the rest of my life.

[Hidden in reply to sumalingum]

I believe some people use apps but I must admit I have such an old phone I don't use apps

You will need to be back under the care of the rheumatologist to get the biologic prescription - GPs cannot prescribe it. The hospital sort out the funding and release the prescription. They use a company called Healthcare@Home to deliver the drugs to your door. You'll also have to have regular blood tests to check all your vital organs are working fine so you will remain under the rheumy as they review your tests and release the next prescription.

In my experience the GPs have no idea what AS is or about the medication! I've had a GP google AS in front of me before so she could deal with me! Apparently some GPs will never come across it in their entire professional career, yet it is more common than MS - which they will all be aware of, so how that can be I don't know!

You will also be advised you should have the flu jab every year (insist at your GP surgery - every year mine says I am not eligible and when I tell them I am on anti-tnf drugs they google it and then give me the jab!) and you are also eligible for the pneumonia jab. It is supposed to be a one off, but I was told on these drugs you should have it every 5 years. We will see if I have a battle with that one when the time comes!

It is a bit overwhelming at first when you are told you have this, it is chronic, it is progressive and there is no cure. My own way of dealing with it is to be positive and hope for the best outcome (no fusion) but to also take steps to try to avoid it happening (take the meds I am prescribed, exercise regularly, eat sensibly). Although there is apparently a hereditary aspect no one else in my family has it and so it was just my bad luck to get it! For me I think a very bad case of glandular fever at 18 kick started it - I was never really well again afterwards. I've read there is some research into the theory that the Epstein-Barr virus can cause the HLA B27 gene to go mad, so it seems my theory may be right!

I only go on facebook to look on the AS page, my dog trainer's page and to use messenger to video call people. If it wasn't for those things I wouldn't bother!

[InkaDinkaDo in reply to Hidden]

Bless you for your very helpful posts of three years ago. They are still helping another soul struggling with AS and RA pain (me). My Rheumatologist told me to take Vitamin D but never said why. I thought I was just temporarily low of it, never would have known the connection to TB prevention and so was lax about taking it. A seemingly small thing but so huge in “our world”.

Thank You. I hope you are still monitoring this site and that you are doing well.