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Lower back pain/ankylosing spondylitis?

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Posted 10/25/2018 3:35 PM (GMT -5)
Bit off topic this, but woke up today with excruciating back pain on the right hand side. I couldn't even walk to my appointment today, as I had intended to - I was in too much pain. Even driving was uncomfortable. It took ages for ibuprofen to kick in and when it did, it only got rid of the pain partially.

This type of pain isn't brand new to me, but I've never had it this bad before. From what I can tell, activity and walking doesn't harm it and in fact makes it better (although the pain was *so* bad, I couldn't even walk earlier).

My fear is that it could be ankylosing spondylitis. I mean, why not. Everything else is wrong with me, why should my back be spared? But on a serious note, I almost certainly have the gene HLA-B27, which would make me more susceptible to it. If you haven't heard of HLA-B27, then it's a human leukocyte antigen (hence HLA) which is strongly associated with certain autoimmune diseases, including IBD, uveitis, ankylosing spondylitis, and other types of arthritis.

That said, I'm not in the mood for chasing up a diagnosis right now, so hopefully it'll go away and I can ignore it again. But I am seeing my GI on the 30th October and going to ask if I can switch biologics - partly in order to try and stop the recurrent uveitis attacks in their tracks, since Entyvio only targets gut inflammation. But maybe I can kill two birds with one stone and treat the back pain too, if it has an inflammatory cause.
Posted 10/26/2018 12:18 AM (GMT -5)
Sounds more like a bulging or ruptured disc than it does AS. AS is generally a very slow, gradual onset of dull ache and stiffness in the lower back and/or buttocks. Sudden increase in pain and/or stiffness is a disc problem or a pulled muscle (which are sometimes related to a bulging disc).

Any pain or nerve tingling or numbness down one leg?
Posted 10/26/2018 5:32 PM (GMT -5)
Thanks beave.

I never even thought of a slipped disc. I should add that the back pain didn't appear entirely out of the blue - it's been around for a while. But unless it's super severe pain, I don't tend to keep track of it. At any rate, it's not been as bad today thankfully.

No pain or tingling in the legs, no.

I also thought of sacroilitis 'cos the pain does seem to be in the same place where the right sacroiliac joint would be.
Posted 10/31/2018 3:45 PM (GMT -5)
Hi NCOT,

Sorry to hear of your low back issues. That's how my original flare of Crohn's presented, first with horrible SI joint pain, then came the diarrhea and other joint pain along with other inflammatory issues like skin things etc. I was never diagnosed with AS and never really got a clear answer about exactly what type of inflammatory arthritis I have with the Crohn's but now other joints are affected. I'm not trying to say that Beave is wrong but mine came on suddenly and it was excruciatingly painful. Thankfully it did go away. I would for sure discuss it with your doctor as you plan on doing.

I haven't been on the board much, but I did see you mention you're having uveitis attacks and are on Entyvio. I'm also on Entyvio which has helped my gut tremendously and is the only thing that has helped long term, but for almost the past year I've been dealing with arthritis and recurrent iritis/uveitis in which this last uveitis flare has been going on almost 2 months and I'm afraid it's going to turn chronic. I've been on high dose steroids along with steroid drops and it's still hanging on. I'm also on Imuran with Entyvio, which technically is supposed to help the arthritis and iritis, but even with increasing dosage, it didn't work. I'm now trying a combo of Imuran (lower dose) with Methotrexate. I'm hoping it works, but I guess i'm kind of skeptical since the Imuran wasn't. Would you be able to tell me more about your experience with uveitis on Entyvio and what your doctor says? Is the 6mp supposed to help with that? I want to know what others who have extra-intestinal manifestations on Entyvio do. Do you have other extra intestinal symptoms including other areas of arthritis?

I asked my GI yesterday about different options, but I don't want to get off the Entyvio without exhausting all options since there really aren't many meds left and none of the other biologics helped my gut. Sorry, I hope you don't mind my asking so many questions. I don't seem to read about many people who are on Entyvio with arthritis/iritis, so I'd like to know what other options there are.
Posted 11/1/2018 6:08 PM (GMT 0)
Hi Octobergirl.

No problem. I'm a bit braindead due to a bad cold, but I'll do my best to answer your questions.

My uveitis started about 3 years ago. During the first year I think it only appeared twice, but ever since then it's gradually become chronic - to the point I now can't get off the steroid eye drops for longer than a few days without it coming back again. (It can appear in the left or right eye or both - there seems to be no rhyme or reason to it.)

As for Entyvio, I've been on that for two years. My GI told me it wouldn't have any effect on the uveitis. That's because unlike other biologics it's not systemic: it works on certain white blood cells that are found only in the gut. Whereas something like Remicade or Humira works by blocking TNF - an inflammatory protein that is found everywhere in the body. For that reason, I was going to ask my GI this week if I could switch biologics, but - extremely annoyingly - he wasn't in when I went to my appointment.

The doctor I saw instead told me that he wasn't authorised to switch biologics, so now I'm gonna have to wait another couple of months to see my actual GI. He did say that another biologic might not help, which I already know - but I still want to try it anyway. Mind, I don't think Entyvio is doing anything for my gut anymore, so it is an easier decision for me.

Imuran metabolises into 6MP, so they're basically the same drug - one just goes through an extra step. The doses given for IBD are relatively low - probably because they can be pretty toxic at higher doses - and so aren't likely to do a lot on their own. Methotrexate has a different mechanism of action, so it could work where Imuran doesn't.

I don't know if it's relevant but I developed another autoimmune condition, Hashimoto's disease, about 5 years ago. I don't think that's genetically linked in the way that IBD, uveitis and arthritis are linked though - every opthalmologist I've seen has linked the uveitis to the Crohn's immediately. One even said she had heard of cases where people had had uveitis for years before going on to be diagnosed with IBD.

But in my case it was the other way round: had IBD for 15 years first before I started becoming plagued by all the EI crap. I suspect eventually the back/SI pain will turn out to be arthritis of some sort. The pain is still there incidentally - just much milder now, although if I prod my lower right back it really hurts if I touch a certain spot. On top of that I also deal with chronic sinusitis and migraines, which I never used to have pre-Crohn's.

I'm sorry I can't help more with the Entyvio and uveitis. I can understand not wanting to stop it if it's helping with the gut. Slightly surprised the high dose steroids aren't helping - is that prednisone? What steroid drops are you on and how many times a day are you putting them in?
Posted 11/1/2018 3:14 PM (GMT -5)
Thanks so much for taking the time to answer all of my questions, NCOT. I'm so sorry that you've been dealing with all of the issues you have.

My iritis also started 3 years ago, coincidentally enough, but that's when I made the switch to Entyvio, which would somewhat make sense since in the past when I was on the TNF-a blockers, I never had the extra-intestinal symptoms, but they also didn't keep my gut symptoms in check. Strangely though in the 9 years that I had Crohn's I hadn't been on the TNF-a blockers the whole time, and when my EI symptoms flared it was never iritis, always arthritis, skin issues, erythema nodosum but never any eye issues until I started Entyvio. I also only had flares twice a year which I always thought were pink eye and would go away on their own in about 3 weeks time. It wasn't until this year when my arthritis really started flaring that the iritis got really bad, and I eventually went to an opthamologist even after the nurse practitioner I saw for a referral told me it was pink eye or I scratched my eye despite my telling her I was currently in a Crohn's flare with arthritis and I had researched that Crohn's can affect your eyes. Thankfully the opthamologist diagnosed me right away, now I just need to get it under control.

How long have you been on the steroid drops, and do you have to go in often to get your pressures checked? I was supposed to taper off the drops by the end of this week. The last time I saw my eye doctor he said do two more weeks of the drops once a day and then every other day, but I haven't been able to go every other day without my eye looking fairly pink again, so I've been doing one day of on drop of Durezol a day and then one drop of Pred forte, but it hasn't completely cleared. ( I originally started on Pred forte every 2 hours, then it got worse so they changed me to Durezol every 2 hours, and I've tapered down from there). I don't really want to have to go back to the eye doctor every week to get pressure checks though, because my medical issues are getting fairly expensive. I'm not sure how long it's safe to be on the drops without checking your eye pressure though. Did your uveitis look like it was completely gone when you had tried to stop the eye drops in the past? What does your GI say about controlling your uveitis, or is he just leaving all that up your eye doctor?

Yes, I am on prednisone. I started in 80 mg and have tapered down. I think it may have helped the iritis a bit but I'm kind of disappointed that even at that high of a dose it didn't fully resolve. Originally when my eye was getting worse while on the Pred forte drops every 2 hours, they said they might have to give me a steroid shot in my eye. That was enough to freak me out, so I'm glad at least my eye has responded to the stronger Durezol drops with possibly a little help from the oral steroids.

I'm sorry to hear of all your other issues with the Hashimoto's, sinusitis and migraines as if you didn't have enough to deal with as far as Crohn's issues. Do any of your doctors think that the sinusitis and migraines are somehow related to your Crohn's or Hashimoto's? Do you have your Hashimoto's well under control? What other biologics are options for you? I'm sorry you're going to have to wait as well to switch biologics. It's such a frustrating thing to have to wait to try a drug and then have to wait to see if it will even take any effect.
Posted 11/1/2018 6:08 PM (GMT -5)
No problem.

Been on the steroid drops for quite a long time now - couple of years. But it's only really in the last year that I've not been able to stop them for longer than a few days or a week at most. I don't tend to bother with a formal tapering down anymore - used to do the whole reducing-by-a-drop-a-week thing but found it made no difference to the speed the uveitis came back afterwards. So now if I get an acute attack (pain, redness) I will put in a drop or two every half an hour or so until it goes - after a few hours it's usually gone again.

The rest of the time I will maintain on one drop a day on average. Sometimes I leave it in a forlorn hope the uveitis won't come back, but it always does.

Incidentally I take a different brand to you: Maxidex. My last opthalmologist tried me on Pred Forte, which he said was stronger. I did do the whole tapering down thing for that, but it didn't seem to work any faster or better and the uveitis still came back a week or so after stopping. So now I just stick with Maxidex, taking as little as I can to keep the uveitis under control.

I get my eye pressure checked whenever I see the opthalmologist or go to eye casualty, so once a month or so depending on how often I go. My current bottle is running low, so I will try to go before it runs out fully. Luckily every time I've had my eyes checked my eye pressure has been fine. I don't know how long it's safe to be on the drops for without getting your eyes checked, but I suspect it's heavily dose-dependent, e..g high doses will be riskier than low doses. Oral pred on top won't help. And 80mg is a mega high dose: normal starting dose for pred here is 40mg. I was on Pred an awful lot in the past, but since my surgery in 2013 I've not had any reason to go on it. However, between Pred and the biologics (Remicade, Humira), that may have kept any would-be uveitis under control.

The Hashimoto's has been kept controlled with levothyroxine - strangely, it was my GI who first detected it when it was subclinical and predicted I would get full blown hypothyroidism. He was right, although it was my GP who diagnosed it 2 years later. That said, there doesn't seem to be any correlation between Hashimoto's disease and IBD. So the fact I have it is most likely mere coincidence, unlike with the uveitis.

Re biologics: the only one left I haven't tried is Stelara. I'm not sure if I'll be able to go on it or not. A lot depends on what happens with Brexit next March and if they can fudge an agreement which keeps things the same... If they can't do that, then there's going to be serious disruption to the supply chains which bring in food, meds, etc. into the UK.

So yeah. It's an incredibly anxiety-inducing time at the moment. I have regular panic attacks over it. I haven't seen my GI since last October - another reason I was so annoyed he wasn't in this week!

I hope you can manage to get your uveitis under control. I dunno if it's worth giving Maxidex a try - it's a different steroid to the ones you're taking. Likewise, I might ask about trying Durezol next time I see the ophthalmologist. I would have a steroid eye injection if I thought it would work - hell, I would go back to a permanent ileostomy if there was a guarantee it would get rid of the uveitis for good.
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