About 24 months ago I was confirmed to have the HLA-B27 gene. My joints have hurt for 20 years. In the past 2 years my joints or really just about my entire body has been getting worse on a near daily rate. Past rheumatologists say, because of the gene I have my pain is likely onset ankylosing spondolytis. But because there is not definitive evidence they were calling it undifferentiated spondyloarthritis. Due to insurance changes I had to get a new rheumatologist. Over the past 9 months I have drastically gone down hill. I figured the RA is starting to get aggressive. So I go to the new rheumatologist and she says that she currently does not believe I even have any form of RA at all. My C-reactive protein is 18.6, where normal is 0.0 to 3.2. However my Sed rate is normal. That is what she is basing her decision on. Because of the gene I also have been confirmed to have fibromyalgia, enthisitis, tarsel tunnel syndrome, scoliosis, chronic headaches, high blood pressure, anxiety, insomnia, bi-lateral shoulder subacromial bursitus, bi-lateral shoulder rotator cuff tendonitis, bi-lateral shoulder degenerative disease, bi-lateral shoulder rotator cuff tears, bi-lateral shoulder impingments, cervical facet syndrome, lumbar facet syndrome, barretts esophagus, hiatus hernia, gastritus, diverticulosis of large intestines, first degree hemroids, 50% hearing loss, loss of near vision, GERD, IBS, I had to have fusion of L5-S1. In the past couple days I have also been diagnosed with venous Reflux disease, metatarsus primas vera in both feet, bunion on my right foot, hammer toe on my right foot, osteoarthritis in both feet, pes planus both feet, osteoarthritis in my S.I. joints and hip joints and osteoarthritis in both hands and both shoulders. With all of these issues, is it not ankylosing spondolytis just running a muck throughout my body? Or am I just flat falling apart at 51 years old?
Do I have RA or not?: About 24 months ago I was... - NRAS
Do I have RA or not?
Sounds like your first rheumatologist was on the ball with giving you an undiff spondy diagnosis based on your symptom picture plus the HLA B27 gene. As you are probably aware, you can only get a formal AS diagnosis when there is obvious damage showing up on xray or MRI (and it has to be in specific areas as well), but damage often only shows up many years down the line and a good rheumie will diagnose and treat you before it gets to that point. However, not all rheumies are clued up enough or interested enough in spondy to diagnose in those pre-radiographic stages - as you have discovered with your current rheumie. AS isn't something that there is any specific blood tests for or easy way to diagnose. Even HLA B27 status isn't definite - you can be positive and not have AS, so it does take a very careful examination and good history taking by a doctor to put all the jigsaw pieces together. I'm not sure how much of your many problems listed you can blame directly on AS, but definitely all those enthesitis/tendonitis things are very very common (AS inflammation happens on the outside edges of bone where tendons join bone, whereas with RA inflammation typically happens within the joint capsule). Neither ESR nor CRP are conclusive markers of inflammation in AS, so they shouldn't be putting any store on that.
Is there any way you can find another rheumatologist who has a special interest in spondyloarthritis? or find a way of attending a specialist spondyloarthritis clinic? I'm guessing because you talk about insurance, that you aren't in the UK. You may want to look at joining one of the US-based forums that are more international. Currently KickAS doesn't have a lot of activity, but the Spondylitis Association of America forum is quite active, and there are a lot of people who understand what you are going through - many of us, and particularly women, have had a really hard time getting both diagnosis and treatment and have had to go to two or three or more rheumatologists before finding one who has really taken the time and interest to get to the bottom of everything going on.
In the meantime there are a lot of self help things you can do - regular daily stretches (google an AS exercise plan) are absolutely essential to keeping maximum flexibility. Some folk respond to a low starch or no starch diet (check the diet forum on the SAA or KickAS forums), and gentle, non-loadbearing exercise will also help (swimming, etc). You might also want to ask your GP for a short course of steroids as a trial - if you respond well then that is another indicator that it is inflammatory rather than fibro pain. If you can tolerate NSAIDs, they also are a first line treatment (taken regularly at full prescription dose) that a GP can prescribe.
Thanks Earthwitch, very detailed thorough information. I appreciate it. I will be checking into some of the local groups or forums like the Spondylitis Association of America.
Hi there! Spondyloarthritis is not a form of Rheumatoid Arthritis, it's a separate though similar family of diseases which includes AS and psoriatic arthritis. To (possibly) over-simplify, AS is the form that affects the spine whereas PsA affects most other joints. Many people have both.
It could be that your current rheumy is one of those who gets 'stuck' on blood tests showing inflammation, many do despite what I believe to be the fact that inflammation from spondyloarthritis does not necessarily show up in bloods. In any case, as your CRP is raised it seems strange that she doesn't see that as evidence of inflammatory joint disease.
I think you need a new rheumy. What a faff that can be .... but so often very worth it.
Thanks Kai. I try hard to fight on. I am a single full time dad of a 14 year old daughter. So I have reasons to fight so hard for now. But I admit every day gets a little harder.
Thanks Doll. It is appreciated.
I find that to be so true. On bad flare days it does indeed make a difference.
Does this sound like RA?
Fed up
I have just had an ultrasound on my right shoulder and am very upset
Gout or ra
Is RA what I have ? ( update )
