Sacro iliac inflammation

[moomie]

Good evening. Just a quick question, has anyone with R A ever had inflammation of the sacro iliac joints ?

[Downtime]

Yes I do, though it's more the tendons and ligaments. The rheumatologist says it should go as treatment progresses. I get sacro iliac and hip tendon pain.

[Tuttlebees]

Oh yes all the time. It's literally a pain sitting down for too long and tend to take a small cushion with me to cinemas, on train journeys etc. rheumy just shrugs.

[Sassysquish]

Yes, yes, yes. Rheumy just keeps glossing over it but it's absolute murder. Been looking for years for some relief so if anyone finds any answers, please share 😊

[dhall54]

I was told I had sero negative RA but recently had an MRI which showed sacro-iliac inflammation so I had a call from hospital to say they had changed my diagnosis to spondyloarthropathy. They said the mtx I'm on will not touch the spinal inflammation, just the peripheral arthritis. So I'm interested to know that you can get it with RA.

[stbernhard]

I have had this since December last year. Rheumy is convinced that it's nothing to do with RA because my RA in well under control and my inflammation markers are not up. It took a lot of pestering my GP to finally get a referral to orthopaedics. Still waiting to hear. There are a lot of exercise leaflets available from the NHS and I found that regular light exercise helps quite a bit. If you google "Exercise for sacroiliac joint pain" on you tube you'll get lots of helpful videos. All the very best, let's hope it works for all of you.

[beauty96]

YES! I put a question on her last week cos of this. I have now bought a belt and found it useful. It was on ebay. I also have on...and I know it is old fashioned but rollons/elastic corset. They really keep the area warm and above all help protect it. It does keep the pains down. Sorry if you are a male but I am sure you understand what I mean by underwear.

My pains started with a vengeance when I did two things wrong, I took three skipping steps when I heard a tune on classic fm and also went to th3 supermarket taking my walker and not in my chariot - scooter.

Let me know how you are as it might be reassurance I was looking for. My pains are on the right side of my spine, and into the hip joint so a lot of bones hurt also I get spasms in the muscle of the butt.

[oldtimer]

sacro-iliac inflammation is more common with spondylosis - the treatment is a bit different from RD. Worth discussing with your rheumy.

[determined56]

Mine (as old timer says) is spondylosis of the spine & joints had lumbar spine fusion / decompression leaving poor S1 joint floundering so had deep S1 joint injection which gave temporary relief ...

Get seen by appropriate consultant & diagnosis.

Muscular skeletal pain can also be crippling

Hugs & hot cup of tea

[moomie]

Thank you all. That's really interesting. I have had this for many years before my diagnosis of inflammatory arthritis recently.

When this flares up I can barely move and initially was in bed for about two weeks. Since being on DMARDS if it flare up with steroids and initial rest ( cannot move hardly ) it settles quicker.

Anyway yesterday at my second biologic assessment which I passed. The Reg wants me to have an ultra sound on my hands to confirm synovitis due to being Sero neg and all my markers low.

Nurse is brilliant and says they have said atypical Rhematoid but need correct label for Nice.

She asked all sorts of questions and when I mentioned G.p had co firmed sacro Iliac inflammation years ago she wants to see if it is now ankolising spondylitis. Had a look at this and things don't fit.

Like I said she is really good and checking all avenues for the anti tend and getting right diagnosis. Main problem recently has been my hands wrists and knees.

Last bad flare up with my back was two years ago. I had an appointment but saw a Dr who dismissed it. Didn't put anything in my notes. She told me he was a G.p who is fortunately not coming back.

Anyway that is why I asked if anyone had had problems similar.

Thanks for all your helpful replies.

Oh also told I have osteo yesterday that I didn't know.

I count myself very lucky though because I have the best Nurse Specilaists. They have so much time for you when you need it.

[Betzz]

Yes. I was diagnosed with severe RA 8 years ago and diagnosed with osteoarthritis in my right SI joint that I have been in twice weekly physical therapy for a year.

The pain was so bad in the SI joint I could not sit stand lay down for any amount of time. My RA doc did nothing. My primary doc sent me to stay right away and found it. From there I had a steroid injection from my pain clinic which did nothing. I entered into physical therapy and my world changed. They worked with me slowly and I have several exercises I do daily. From laying in bed, sitting in a chair, standing. Gradually I went from being helped to walk into their building, to become functioning again. I no longer have to move positions all the time. I am not moving from bed to couch to recliner to diff bed every 2 hours 2 sleep. I am not in tears with pain most of day because it hurts so bad. There are many videos on YouTube with exercises if your insurance won't cover it. The exercises specifically for the SI joint made by medical professionals are well worth it. Good luck. Betsy

[shareasmile]

Before I was diagnosed with sero negative RA, I had severe SI joint pain. Over several years, I was diagnosed with everything from weak pelvic floor to endometriosis to uterine fibroids--even had a hysterectomy to relieve the pain. Nothing helped. It gradually became so bad that I could not sit in a chair or lie down in bed to sleep. I finally saw a Physiatrist that pointed to the SI joint as the problem. She sent me to a pain doctor who gave me a series of steroid shots which didn't make a big difference. An MRI confirmed inflammation in the joint. Finally had a radiofrequency ablation procedure done in the joint through my buttock. Wow! What a difference! The pain was gone for 10+ months. I had a repeat ablation done when the pain began to return and I haven't had a problem since. I am pretty sure it is because the nerves are fried, but I am suffering with SI joint pain no more! This all happened from 2010-2012. I was diagnosed with RA in 2013. I am pretty sure the SI joint dysfunction and the RA are related.

[moomie in reply to shareasmile]

Pleased you have at long last last got relief, but wow what you have had to go through. This is interesting thank you. I will bear all this in mind.

[earthwitch]

Sacroiliitis is the hallmark of ankylosing spondylitis, which is a seronegative inflammatory arthritis. I guess it is possible to have it as part of RA, but it would be more usual to have it as a major part of one of the spondyloarthritis group (ankylosing spondylitis, psoriatic arthritis or reactive arthritis) as it is more of an enthesitis (inflammation at the point where tendons join bone) than a synovitis (inflammation within the joint capsule). In general, Spondy disorders are more enthesitis related, and RA is more synovitis related.

It is really interesting that in the UK it would seem there is much more reluctance to diagnose spondyloarthritis than in other countries, and you tend not to get a diagnosis here unless you very definitely meet radiological criteria for AS or have psoriasis (for PsA), whereas in the US there is a lot more diagnosis of undifferentiated spondyloarthritis rather than "seronegative arthritis". As someone else said, it is important to get the right diagnosis because the DMARDS used for RA don't actually have a disease modifying effect on spondyloarthritis (although a couple of them, MTX and SSZ, can help with some degree of disease control). It does seem that an awful lot of folk are getting told "seronegative arthritis" when they have classic spondy symptoms of spinal and sacroiliac pain, plantar fasciitis or achiles tendonitis. If you do have sacroiliitis, see if you can be referred to a rheumatologist who has a special interest in ankylosing spondylitis - many general rheumatologists just don't seem to know enough about AS to pick it up early enough. Its bad enough that it can take 8-10 years of active disease for it to show up on xray without having it either misdiagnosed or not even considered. .

Its also worth checking the National Ankylosing Spondylitis Society website for the list of criteria for inflammatory back pain - if you tick all the boxes, that's another indication that spondy should at least be considered.

[moomie in reply to earthwitch]

Earthwitch this is very interesting and informative and I will certainly have a look. Does seem my symptoms are all muddled. Had a quick look at AS and it says the pain eases with exercise but I cannot barely move when it flares up. After I started on sulpha it did keep things at bay. Certainly the preds are the ones that settle it down. Used to find when I had a bad flare up my knees did too, they get hot red and swollen.

More recently my hands have been flared up and the Nurse said I have synovitis but who knows now til I have an ultrasound.

You have just reminded me too about the last steroid injection in the bursa in my hip the Dr said it was very abnormal with lots of inflammation. That was a different hospital but will chase this up.

At least the Nurse is looking at all avenues to get the correct diagnosis so I can get the right treatment.

Thank you for your information

[Sassysquish]

What I've noticed is that everyone seems to be sero-neg. This would really fit with spondylitis, AS etc. However, I have severe SI joint pains BUT I'm sero-poss with high RF. My RA is aggressive but so is the SI pain at times. I'm confused 😵

[Ellie77 in reply to Sassysquish]

I'm the same to?! I'm aero negative but I'm still in agony when I have flares x

[moomie]

I have found this very interesting and informative too. And yes it does seem like most are Sero negative. Eathwitchs comments are very good and I have certainly looked at the A.S site. Also looked at PSA which does fit in with my symptoms but I don't have the skin problems. My Sister does but not arthritis. I will see what my Nurse comes up with. But thank you everyone this has been really useful.