Did you have inflammatory markers in your blood?
Hello,
I hope whoever is reading this is having a good day and thank you for your time reading this.
I’ve been reading your stories on here and I see myself in so many of them.
I wanted to ask advice, if I may, did any of you who are diagnosed with AS have inflammatory markers show in your blood or were any of you diagnosed with AS without inflammatory markers in your blood and scans?
My chronic lower back, hip, and joint pain is really affecting my life, making me depressed and anxious. I am actually a very happy, active, bubbly social person but I have 20% of my usual power atm.
These are my symptoms:
- HLAB27 positive
- I wake up with pain every day, this gets better if I move after 30mins an hour
- I have lower back and hip pain especially on waking but also during the day
- Aching joints (mostly shoulder, knee, wrist)
- Fatigue
- Psoriasis
- Have developed brain fog with difficulty concentrating
- years of tummy issues since I was a child, gluten intolerant
- spondyloarthritis (appeared in the write-up of my spine MRI in my last MRI but was not enough for them to say AS I presume?)
Between 2014-2021 I have had four slipped discs so when I go to the doctor they say my pain is mechanical pain not AS.
I am in a cycle of them giving me a physio referral and ibuprofen 600mg and tell me they can’t see AS on my scans so it isn’t that. I’ve always been relatively fit and lean just for context. Then I don't go back to the doctor till my pain and mobility get worse, as I feel silly. Then they scan me again, say it's a slipped disc and so the cycle goes on.
I’ve lost my confidence talking to doctors and I wondered how you kept your confidence going to go to the appointments?
I only want a diagnosis as I know I could hopefully have the right medication… and I am in pain every day, this isn’t from a slipped disc you are meant to get over slipped disc pain in 6 weeks. It's been 6 years and getting worse now with my hip.
If anyone can help or advise I would be so grateful.
Thank you very much for your time.
Hi Edna,
I relate to everything you are experiencing, as ditto for me!!
It's truly awful, and it shouldn't be this hard. I have OA and DDD too and for years all my symptoms were put down to this. I had to fight so hard - as, like you, I realised that the initial extreme pain of a slipped disc is huge but it's temporary, and my pain had slowly INCREASED for years, not decreased (I have 8 herniations and I don't think they cause me much pain!)
I'm quite astonished that no one here has stated something so important - up to 40% of AS patients have NO inflammatory markers. AS is a weird condition that, for some, no inflammatory blood markers will be present. So, not having these does NOT mean you don't have AS (or Axial Spondyloarthritis which is what you have until fusion is detected).
This information about no blood markers is explained on the National Ankylosing Spondylitis Society website, which is UK based www.nass.co.uk
I really hope this helps you.
Hang in there, keep fighting, you'll get there I'm sure x
Hello Edna, I have just recently been diagnosed with AS and am in the middle of a particularly difficult flare. I just had my blood work done 2 or 3 weeks ago. All of my inflammatory markers were normal, although my x-ray showed inflammation and deterioration in my SI joints. All my blood tests were normal except my HLA-B27 test- which came back positive
My inflammatory markers were the first indication that let to my diagnosis just a few months later. I went to my PCP suffering from extreme fatigue and muscle weakness and pain in my quads and hips in 2020. Note: I had been to see her the year prior with the same muscle issues only to be sent to PT for tight IT bands. She ran a series of tests at this second visit, finding that my SED rate was almost 120 and my CRP was just under 15!! Way off the chart. Prednisone was my first prescription. Additional testing indicated that I was HLA-B27 positive. Off to the Rheumatologist I went. X-rays of my pelvic region showed that I had enthesitis (inflammation of the tendons at the attachment sites) throughout my pelvic area. I'm no longer taking Pred and am only using Humira, which seems to keep my systemic inflammation under control. However, I still have localized inflammation of my tendons, especially hands and feet. I also have degenerative disk disease in my lumbar spine and sometimes it's hard for me to distinguish if my pain/symptoms are the result of my DDD or my AS.
My inflammatory markers have varied over the years. At first, they were off the chart. But as time has moved on I have had fewer and fewer markers. I suppose it is a matter of immunosuppression over time. ............. rick (moderator)
Hi
,
I am ever so sorry to hear that you have been going through all of this, it sounds very tough and frustrating.
When I was diagnosed my slipped discs (which I didn't know I had) got in the way of a quicker diagnosis. When I was sent for an MRI scan to confirm my doctor's suspicions that I had AS the entire report that the radiologist made was about the discs and there was no investigation made into the possibility of AS.
Because of this I was sent back for a second MRI scan and my rheumatologist made strict instructions for them to ignore the slipped discs and only focus on looking for indications of AS.
Sure enough they saw that I had AS as well. I don't know if this is the same situation for you but it could be worth double checking that the MRI scan was specifically looking for AS indicators and ruled it out or maybe they were only focused on the slipped discs instead.
I hope you get the answers and treatment you need soon!
Sending love,
James (Community Member)
