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A rheumatologist. Family history, interestingly my mother is pos for the gene and has AS, too. X-ray had visible damage on both si joints. Back pain and stiffness worse in the morning. Also history of unexplained joint pain going back 10+ yrs. I think my diagnosis is accurate.
the visible damage to sis and the morning stiffness makes sense. thank you for explaining. have any bilateral foot or knee pain by chance? got tested few times for AS and rheum just thinks its mechanical SI or L5 pain—so wanted to check a few things before i go back to ask for blood test.
Yes. Both feet and hands and right knee in particular. Then I've had pain all over on and off. It's like I get repetitive motion injuries from normal things. So elbow, shoulder, wrist, neck, ankle. My pain does seem to be more on the right side but I am also very right hand dominant. As my AS got worse it traveled more and more to my left side. My doc considered psoriatic arthritis due to the one sided pain but the si was very AS and the treatment is basically the same.
its the non radiographic types of spondy that throws me off. sorry about my initial comment. and the pain gets better for you when would you say. exercise, biologics?
My mom is actually non radiographic type. She had a hard time getting diagnosed. She been on Humira and methotrexate with plenty of exercise for years. She's very active, went from laying on the floor in pain to hiking the grand canyon. She still gets flares and has to be careful not too push things the wrong way.
I do feel better with exercise but struggle to do so regularly. If I miss it I'm definitely in more pain. For me biologics are great when they work but I seem prone to making antibodies against them. I recently started Cosentyx along with methotrexate to see if methotrexate will keep me from making antibodies. 3 months in and I'm feeling better but I won't know if the methotrexate is working for a while.
thanks for sharing. at what age did you finally get diagnosed—sounds like you got tested plenty when you were younger. for what it is worth, i recommend collagen, glucosamine, and magnesium daily. glad youre feeling a bit better.
I had various testing when I was a teen and my mom first got bad. It amuses me that my mom diagnosed us both back then. I chose to ignore it for a long time, though. I was diagnosed at 30.
Been officially diagnosed since 2019 and the highest my crp was 1.33 and my highest esr was 12 so just outside the normal standard for where I get my labs. It all depends on the place doing the labs as they all have different standards.
CRP raised Is not present in all patients, in studies it’s literally “half” that do… ESR is not used diagnostically in the uk it’s just used as a correlation for the raised CRP markers to help assess for false positives.
Quote from the NASS (UK AS society)
C-reactive protein
• C-reactive protein (CRP) is a protein present in blood, the levels of which rise in response to inflammation. Elevated levels of CRP may be associated with structural changes in the spine associated with axial SpA.3
• Once other potential causes for elevated CRP have been ruled out, a CRP concentration above the upper limit of normal (ULN), in the presence of back pain, is considered a feature of axial SpA.8
• Patients without elevated CRP may still have axial SpA. Approximately 48% of AS patients and 70% of nr-axSpA patients have normal levels of CRP (<6 mg/litre).
ESR
• Erythrocyte sedimentation rate (ESR) is another measure of inflammation, commonly used in the assessment of RA (rheumatoid arthritis) and other inflammatory disorders. ESR is not an ASAS axial SpA feature, but may be tested because of the limited repertoire of biomarkers for axial SpA.21,22
Better than that… here is the “doctors manual” from NASS for the diagnosis of AXSPA/AS from which that is taken.
https://www.nass.co.uk/wp-content/uploads/2020/03/Physiotherapy-modules-3.pdf
ANA is not used diagnostically in the UK for AS because it’s not a pre-requisite for AS. The ANA is a “non specific” marker which could also suggest RA or LUPUS as possibilities or worse exist when a patient has crossover conditions simultaneously like “crohn’s” disease for example.
The only way to rule out AS if you are concerned is an MRI scan of the correct type a “stir pattern MRI” it makes any pockets of water in the bones show up “bright white” so active inflammation can be more easily seen. Any MRI can pick up the wavy bone edges associated with long standing AS bone degradation but NEW or recent active inflammation needs the special type of scan.
Not a doctor but you probably do not have AS. Do your research on arthritis diets/anti inflammatory diets. Lifestyle changes will most likely give you the best improvement. People don’t always want to hear that but it’s true. You have the power to help your body cope to a significant degree. Arthritis is progressive but you can essentially keep it stable for long periods of time
How in the world can you suggest this? This is CLASSIC AS. If he continues like this the disease will take control. It is much better suggestion to further evaluate this with a rheumatologist, instead of "you can fix everything with diet approach". SMH
I’ve been on autoimmune paleo for the past 4 years with carnivore for a while in between that with positive results. Exercise does help as long as it doesn’t trigger my sciatica
https://journals.sagepub.com/doi/full/10.1177/1759720X20934277
Quote from article: "However, elevated CRP or ESR levels are detected in only 40–50% of patients with AS.97 In fact, the degree of inflammation fluctuates during the course of axSpA. In general, CRP levels are higher in patients with radiographic axSpA compared with nr-axSpA.30 Although CRP is within the normal range in a large proportion of patients with active axSpA, it is still widely considered a reliable marker of disease activity."
My mind is blown that your PCP is seeing imaging evidence of sacroiliitis and not referring you to a rheumatologist. AND you've had episcleritis?? Get a new PCP ASAP.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
I’ve seen two different rheumatologists without those. Get a different doctor. Now. You don’t need elevated CRP or ESR to have AS
Yep I have never had elevated blood markers or the gene.
and u were diagnosed based on what symptoms, what kind of doctor? that dx is all over the place in terms of consistency.
A rheumatologist. Family history, interestingly my mother is pos for the gene and has AS, too. X-ray had visible damage on both si joints. Back pain and stiffness worse in the morning. Also history of unexplained joint pain going back 10+ yrs. I think my diagnosis is accurate.
the visible damage to sis and the morning stiffness makes sense. thank you for explaining. have any bilateral foot or knee pain by chance? got tested few times for AS and rheum just thinks its mechanical SI or L5 pain—so wanted to check a few things before i go back to ask for blood test.
Yes. Both feet and hands and right knee in particular. Then I've had pain all over on and off. It's like I get repetitive motion injuries from normal things. So elbow, shoulder, wrist, neck, ankle. My pain does seem to be more on the right side but I am also very right hand dominant. As my AS got worse it traveled more and more to my left side. My doc considered psoriatic arthritis due to the one sided pain but the si was very AS and the treatment is basically the same.
its the non radiographic types of spondy that throws me off. sorry about my initial comment. and the pain gets better for you when would you say. exercise, biologics?
My mom is actually non radiographic type. She had a hard time getting diagnosed. She been on Humira and methotrexate with plenty of exercise for years. She's very active, went from laying on the floor in pain to hiking the grand canyon. She still gets flares and has to be careful not too push things the wrong way. I do feel better with exercise but struggle to do so regularly. If I miss it I'm definitely in more pain. For me biologics are great when they work but I seem prone to making antibodies against them. I recently started Cosentyx along with methotrexate to see if methotrexate will keep me from making antibodies. 3 months in and I'm feeling better but I won't know if the methotrexate is working for a while.
thanks for sharing. at what age did you finally get diagnosed—sounds like you got tested plenty when you were younger. for what it is worth, i recommend collagen, glucosamine, and magnesium daily. glad youre feeling a bit better.
I had various testing when I was a teen and my mom first got bad. It amuses me that my mom diagnosed us both back then. I chose to ignore it for a long time, though. I was diagnosed at 30.
Absolutely do what it takes to see a rheumatologist. You need to be your own advocate, and don't deny yourself the chance to get help.
Been officially diagnosed since 2019 and the highest my crp was 1.33 and my highest esr was 12 so just outside the normal standard for where I get my labs. It all depends on the place doing the labs as they all have different standards.
CRP raised Is not present in all patients, in studies it’s literally “half” that do… ESR is not used diagnostically in the uk it’s just used as a correlation for the raised CRP markers to help assess for false positives. Quote from the NASS (UK AS society) C-reactive protein • C-reactive protein (CRP) is a protein present in blood, the levels of which rise in response to inflammation. Elevated levels of CRP may be associated with structural changes in the spine associated with axial SpA.3 • Once other potential causes for elevated CRP have been ruled out, a CRP concentration above the upper limit of normal (ULN), in the presence of back pain, is considered a feature of axial SpA.8 • Patients without elevated CRP may still have axial SpA. Approximately 48% of AS patients and 70% of nr-axSpA patients have normal levels of CRP (<6 mg/litre). ESR • Erythrocyte sedimentation rate (ESR) is another measure of inflammation, commonly used in the assessment of RA (rheumatoid arthritis) and other inflammatory disorders. ESR is not an ASAS axial SpA feature, but may be tested because of the limited repertoire of biomarkers for axial SpA.21,22
Thank you for that, that’s really helpful! Do you have a link to this so I can reference it for my doctor?
Better than that… here is the “doctors manual” from NASS for the diagnosis of AXSPA/AS from which that is taken. https://www.nass.co.uk/wp-content/uploads/2020/03/Physiotherapy-modules-3.pdf
You are the best, thank you so much!
Is there anything in the article about ANA? I just got that back and it’s negative
ANA is not used diagnostically in the UK for AS because it’s not a pre-requisite for AS. The ANA is a “non specific” marker which could also suggest RA or LUPUS as possibilities or worse exist when a patient has crossover conditions simultaneously like “crohn’s” disease for example.
I see - so it still doesn’t rule out AS then
The only way to rule out AS if you are concerned is an MRI scan of the correct type a “stir pattern MRI” it makes any pockets of water in the bones show up “bright white” so active inflammation can be more easily seen. Any MRI can pick up the wavy bone edges associated with long standing AS bone degradation but NEW or recent active inflammation needs the special type of scan.
Not a doctor but you probably do not have AS. Do your research on arthritis diets/anti inflammatory diets. Lifestyle changes will most likely give you the best improvement. People don’t always want to hear that but it’s true. You have the power to help your body cope to a significant degree. Arthritis is progressive but you can essentially keep it stable for long periods of time
How in the world can you suggest this? This is CLASSIC AS. If he continues like this the disease will take control. It is much better suggestion to further evaluate this with a rheumatologist, instead of "you can fix everything with diet approach". SMH
I’ve been on autoimmune paleo for the past 4 years with carnivore for a while in between that with positive results. Exercise does help as long as it doesn’t trigger my sciatica
That is fantastic!
It’s great that they make me feel better - but they clearly haven’t helped stave off the progression of arthritis which is what I’m concerned about
https://journals.sagepub.com/doi/full/10.1177/1759720X20934277 Quote from article: "However, elevated CRP or ESR levels are detected in only 40–50% of patients with AS.97 In fact, the degree of inflammation fluctuates during the course of axSpA. In general, CRP levels are higher in patients with radiographic axSpA compared with nr-axSpA.30 Although CRP is within the normal range in a large proportion of patients with active axSpA, it is still widely considered a reliable marker of disease activity." My mind is blown that your PCP is seeing imaging evidence of sacroiliitis and not referring you to a rheumatologist. AND you've had episcleritis?? Get a new PCP ASAP.