SI Joint Osteoarthritis

Stayinghopeful

Hello, just been diagnosed with osteoarthritis of my si joints. So just wondering if there was anyone else on here with the same diagnosis and what your experience has been like?

It seems like it isn't so common to get osteoarthritis in your si joints, at least I haven't seen much written about it.

Poppyjane

Hi @Stayinghopeful

I thought you might be interested in this link. I don't know about you but it always helps me to have a picture to help me understand details better.

https://www.versusarthritis.org/about-arthritis/conditions/back-pain/

Best wishes

Poppyjane (Moderator)

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/722016#Comment_722016

Thanks. Since I have had back pain a while, I am pretty familiar with all the guidance around how best to live with it, as I educated myself. Doing all those things helped me to live with it a bit better but hasn't made much difference to the pain. I do now have a plan with my msk specialist to look at what they can do to help with the pain. So fingers crossed.

But I was really just curious to hear if anyone else has this specific diagnosis, as it seems not super common.

MrDJ

Hi @Stayinghopeful

I was first diagnosed with ostio at the age of 21 back in 1985 in one foot/ankle and was told id be in a wheelchair within 6 months. docs were amazed and never seen symptoms like i was getting. Within 9 months i couldnt walk unaided and used crutches but was determined to prove i would not end up in a wheelchair..

a year later my lower spine SI joints flared. they done more xrays and said yes it was ostio but decided to do a special blood test called HLAB27 which came back positive. they then changed my diagnosis to ankylosing spondilitis. within 3 months of that blood test they done more xrays and said my SI joints had totally fused and luckily burnt themselves out so it did not spread up the rest of my spine. to this day the rest of my spine has not been affected unlike the rest of my extremitys.

I dont know how common this special blood test is now as im guessing there are many more tests they can do but its worth asking is there anything else they could try to confirm its ostio.

Stayinghopeful

I'm really sorry to hear about all of that, sounds like a very tough journey.

Thanks for the heads up re diagnosis. But they have actually done the gene test for hla b27 and it was negative, as well as blood tests etc to look for inflammation and the scans and so it looks like based on all of that it is osteoarthritis rather than AS. I'm happy to trust their judgement they were very through.

The osteo was actually only picked up because they sent me for all these tests including x-rays and MRI to rule out AS, and it showed on both x-rays and MRI.

jamieA

Hi @Stayinghopeful

I don't have your condition I have psoriatic arthritis. One of the known areas PsA affects is the SI joints and my right SI joint is particularly affected - it was an MRI scan that showed it was damaged. My rheumatologist prescribed lidocaine patches for some of my joints including my right SI joint. When my joint is painful I find that 4 or 5 days of lidocaine patches on my lower back dampens it down. I know the patches are expensive to the NHS at £75 for a box of 30 but they do work for me.

Emmasknackeredjoints

Unfortunately the SIJ is know those of us with IA. Painful joint that's for sure.

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/722029#Comment_722029

Thanks I was prescribed lidocaine patches previously (pre diagnosis when they just thought it was mechanical si joint pain) when I lived in Scotland and yes they definitely helped me too. Unfortunately when I moved to England I was unable to get them prescribed down here. Shame as they were really helpful in managing the pain.

Glad to hear you find them helpful and are able to get them.

I am now being referred to the pain clinic so hopefully they will have some other options.

I'm doing all the self management stuff like exercise, mindfulness etc but my main struggles is sitting for any length of time which makes life quite challenging so hoping they can find some ways to help me a bit more.

jamieA

Hi @Stayinghopeful

Sorry I had a bit of a brain fog - it was actually the consultant I saw at the pain clinic who prescribed lidocaine patches - as well as capsaicin cream. Is it because of cost to the NHS that you cannot get lidocaine patches prescribed?

I hope you can get some relief soon.

Stayinghopeful

https://community.versusarthritis.org/discussion/comment/722044#Comment_722044

Yes I think only consultants can prescribe them. I saw a pain consultant privately last year in Scotland and he prescribed them for SI Joints pain.

When I moved my GP in England could no longer prescribe them. I have found ice actually helps a lot, but so far that's really the only thing other than the lidocaine patches that's worked for pain relief.

I've tried ibuprofen and naproxen which don't seem to have much impact but I am wondering about asking my GP for a different type of nails as I think there is a bit of personal variation in terms of which ones work whilst I wait for the referral to the pain clinic to come through.