Ankylosing spondylitis?

[Monkey321]

Hi, as I posted earlier my Dr had diagnosed mevwith PMR but after being on high prednisone (started on 30 mg, now on 22 mg with 1mg tsper every 3 days) with view to stopfor now 12th weeks and no marked improvement he was now thinking RA. I had a x-ray yesterday on feet and hands which is all clear, no issues at all. I'm awaiting bloods including HLA-B27 still. My Dr has sent me an email this morning with info about Ankylosing spondylitis and seems to be thinking it's now an option. My pains are back related, hips, shoulders, sternum (but pretty much sore everywhere really). I had a lumbar bsck x ray in April which showed up sacrum issues and C5 issues and mild osteoporosis which didn't raise any alarms at the time. Dr has referred me to a rheumatologist now but in the public system that'll take ages to get an appt. I'm going to dr on monday again so if anyone has any advice I should be talking to him about, please let me know. AS from my reading of it is very rare 1/1000 and it's not in my family at all. I have 3 teenage daughters so a bit concerned that if I do have the gene I may have passed it onto them, besides which A

[Monkey321]

Hi, thank you, I had a look at your links, very informative and pretty much what my symptoms are. The HLA-B27 test isn't due back till 18th July so will have to wait but Dr said other bloods eg rheumatoid factor negative and x-rays clear. I did have in Jan 2021 a severe gastro unexplained vomitting and diarrhea bug for 12 days which nobody else (husband or 3 kids got). Perhaps if I have the gene set off the trigger.My lumbar x-rays in April showed:

Transitional lumbosacral vertebrae and mild bilateral hip osteoarthrosis with no bony abnormalities.

My ultrasound in May showed:

Bilateral supraspinatus calcific teinopathy

Bilateral subacromial subdeltoid bursitis wuth bunching worse on the left

Probable bilateral trocherantic hip bursitis

[PMRpro Ambassador in reply to Monkey321]

If I remember correctly, plain x-ray in the early stages is not much use. MRI is the modality of choice in early AS, the changes that show on x-ray are late to develop.

niams.nih.gov/health-topics....

Inflammatory arthritis in the form of reactive arthritis should also be considered.

WHEN is your back pain worst? And of course - you can have more than one problem ...

[Coffeebeans in reply to PMRpro]

You are correct PMRPRO. I had a detailed MRI on my spine to rule out inflammatory arthritis or AS.

[Monkey321]

Hi, thank you. Back pain pretty constant 24/7, lower back and down towards buttocks predominately. Upper back round shoulder blades too. Sore walking, sitting, lying down, sore to lean forward, sore sitting if feet not touching floor, sore to twist, lift eg even pouring water from jug, doing dishes, making tea etc. It's worst from waking round 3am, stiff, if I get up, go to the bathroom will need paracetamol to settle again. Sore with activity eg after going to supermarket today, just walking round getting products off the shelf was sore (i didn't push trolley or carry groceries inside either). Most sore I'd say sleeping or sitting. Dr looking at what he termed seronegative spondyloartropathies. Will look at the link, thanks

[PMRpro Ambassador in reply to Monkey321]

Why? What makes him think that? All you describe is really very typical with PMR - even 3am pain, AS pain tends to be spinal and earlier in the night although it could be, not saying it isn't. Though if paracetamol helps that does suggest some at least isn't PMR as it rarely helps - but I wouldn't expect paracetamol to be very helpful in AS either. Naproxen, yes.

The pain you describe is also typical of Greater Trochanteric Pain Syndrome which is quite common with PMR and it may respond a bit to oral pred but it isn't the best approach. I actually find using and leaning on the shopping trolley helps. There are specific stretches you will find online that might help

yourphysio.org.uk/condition....

nhsaaa.net/allied-health-pr....

This is a bit heavier

academic.oup.com/painmedici...

but it illustrates how low back pain is a very complex complaint and there are no simple diagnoses or answers.

[Monkey321 in reply to PMRpro]

Thank you, really helpful. Dr said via email that because at the moment none of my bloods are markers for RA (or hand/feet x ray clear) and prednisone not improving things that it's 'seronegative'. He also said he's been a dr 45 years and never seen anyone like me! I find leaning forward eg on the trolley sore and the pushing movement too sore especially as it fills up with groceries and gets heavier. Personally I think that I have multiple issues going on all exasperating 1 another.

[Missus835 in reply to Monkey321]

Sounds exactly like all the pain I am currently trying to handle. Usually makes me cry. Going into 3rd week of "on the bed". I do get up and walk with my walker and sit as long as I can ( all said 10 mins. at the most.) Doped myself up to get a ct scan Thursday past. If all this is PMR then 40 mg. of Pred did not help BUT Rheumy has me reducing regardless. Now at 22.4. Pain is getting worse, not better. A trip to a store right now would be impossible. Cannot lift a jug of water. Cannot sit on the loo for long. Self sufficiency down the tubes. My 16 year old granddaughter has been looking after me.

[Monkey321 in reply to Missus835]

Thank you, that is horrible for you, 3 weeks of that! You're very blessed to have such a lovely grandaughter. I hope you improve rapidly and are able to get it sorted.

[Missus835 in reply to Monkey321]

Thanks Monkey...hopefully soon.

[Monkey321]

Thank you, will look at your link, appreciated. The gastro bug I had was horrible, couldn't even hold down water and was too ill to go to Dr. It was full on 12 days of diarrhea and vomitting which after a while was just green bile. Massive cramping which was the worst part. Finally went to dr who injected me twice in my buttock with who knows what but it did help. The back pains etc started in May so 4 mths later. I was a part time cleaner so put it down to the vacuuming etc initially.

[Monkey321]

Gosh, what a nightmare for you, it probably was prednisone the energency doctor gave you. Very scary that you were on IV. I was drinking the sachet fluid drinks but every sip in literally came out so just sipped all day. I thought it very weird that nobody else caught it as if it was food posioning we all ate the same tea the night prior. I was disinfecting the loo, door handles, taps etc like crazy. I haven't had or got any eye issues thankfully. I did have over 2021 twitchy eyes on and off which was annoying but not sore, i figured it was lack of sleep or stress or sinus related. Comes occasionally but nothing major. It seems its a hard thingbto diagnose as could be numerous overlapping 'arthritis' terms. I'm keen to know if I have the gene too as at least then it's something concrete. No one in my family has or had any arthritis type illness. Thanks for replying.

[Monkey321]

Thanks, yes, i agree. It's very easy to "dr google" and self diagnose. It's good also through this forum to read personal accounts and experience as that counts for a lot. I suspect that you're right and will take a while to get a diagnosis (if i do). It's been 2 years already.

[SID3]

please don’t worry about the genetic side. I have/had AS (which usually presents at age 20) and while most who have it have the HLAB27 positive most people with the latter never get AS. You might have had AS mildly for years without knowing it and that is a good sign. Mine was very painful in my 20s but burned out. One key sign of it is if you have had iritis(uveitis) a painful inflammation of the eye which needs steroid drops treatment. Best wishes

[Monkey321 in reply to SID3]

Thanks for your reply. I haven't got uveitis thankfully. I did have eye twitching for a few months over 2021 which was massively annoying but no redness or soreness. I put it down to stress.

[Missus835]

I asked her if she'd rather be home. She said she'd be doing the same thing there and was doing this because she wanted to. She can still go with her friends as they are working during the day. I would be lost without her. Can't afford ehat we call Homecare, but I slip her $10 or so. She loves to thrift shop as do I. I asked her to send pics as it feels like I'm there with her...and she does. 😇

[Missus835]

Yes.

[Bramble2000]

as is “relatively “ rare. I have AS and PMR. You’ll need to have active inflammation seen in your sacroiliac joints to diagnose. The HLAb27 can be a bit of a red herring because many people so are positive never go on to develop AS. Have a look at “NASS”, National Ankylosing Spondylitis Society. They are full of really useful information.

[Monkey321 in reply to Bramble2000]

Thanks for your reply. I'll check out NASS. I'm going to Dr today for follow up but he hasn't got the bloods back yet so won't know much more. It's a hard thing to diagnose as initially he thought fibromyalgia then polymyalgia then RA. An x ray showed up mild osteoporosis in sacroiliac joint.

[PMRpro Ambassador in reply to Monkey321]

A plain x-ray cannot show osteoporosis ... Do you mean osteoarthritis?

[Monkey321 in reply to PMRpro]

Just double checked, it was a hip and lumbar x ray in April this year. The conclusion in radiologist remarks was "mild hip osteoarthrosis"

[Monkey321 in reply to Monkey321]

Just saw Dr, he is none the wiser, advised me to consider going private for rheumatologist as huge shortgage/waiting lists locally. Prescribed more paracetamol and an anti inflammation (can't remember the name, have to pick up on Wednesday) and to continue to taper prednisone 1 mg every 3 days.

[Monkey321 in reply to Monkey321]

Was told my local rheumatologist based in public hospital was 6 month wait time. However was rung this morning and have an appt on 7th August...yay!

[PMRpro Ambassador in reply to Monkey321]

Yup - osteoarthrosis is another name for osteoarthritis