Spondylitis Association of America

Differing diagnosis

Posted By: achala

Differing diagnosis - 05/24/18 06:13 PM

hello,
thank you in advance for reading.
Could you please direct me if possible to the approximately relevant for me threads?
I am caucasian male 37 yo. Developed first Iridociclities (minor flare) on my honeymoon in Nov 2017, 'treated'with yellox.
Second episode of Iridocilities (this time diagnosed as such) in April 2018 was much harder and Ophtamologist could not open pupil with Tobradex/Tropicamida for about a week, therefore I ended up on Medrol for 1 month. She made a connection to autoimmune diseases, as I had accompanying cervical/occipital pains and here we go I was tested for HLA B27 - positive. CRP - 20, VSH -20, fibrinogen - 572 before Medrol. CRP - 11, VSH 15, fibrinogen - 412 after Medrol.
Visit at rheumatologist and AS diagnosis, although MRI of sacroiliac joint completely clean. MRI of the cervical spine I have performed before the pain started in FEB 2018 also completely clean. After I finished Medrol (1 month) for the uveitis, he put me on Arcoxia 60mg, which took away approx 40% of the cervical pain away. Therefore we moved to 90 mg, which alltogether removed about 60% to 70% of the pain/stiffness of the neck.
I decided to try another rheumatologist for a 2nd opinion. Conclusion: because SIJ has no symptoms + cervical pain does not show the typical AS signs (pain is all the time no matter night or day) she thinks its a mechanical strain, perhaps discopathy of cervical spine and no AS. + she said Uveitis and send me back to Ophtamologist. CRP - 31, VSH 30.
Ophtamologist did some proper yelling at me that the cause is AS and I should be treating AS, etc. She made a check up and concluded its another Uveitis flare just beginning to form (23.05.2018). So I am back on Tobradex/Tropicamida until next monday if no improvement we are back on Medrol. The issue is that Medrol does not help for the cervical pain at all, and I cannot sleep due to pain.
I am in some kind of a vicious circle with 3 episodes of Uveitis in 8 months. Medrol working on Uveitis but not on cervical pain, and Arcoxia the opposite.
I tried acupuncture - made no sense in my case
I swim a lot and do kinetoteraphy + yoga. I try these things not to put me down, so i keep active, but the eye is a problem.
Where shall I go next.
Input appreciated.
Posted By: Winston

Re: Differing diagnosis - 05/24/18 07:25 PM

I would go back to the first rheumatologist and discuss the second rheumatologist's opinion with him/her. Your symptoms certainly sound like SpA to me (maybe not AS, but in the family). Note that the clean MRIs are not dispositive. It can take years for damage to appear on imaging.
Posted By: Tim_K

Re: Differing diagnosis - 05/24/18 11:02 PM

I think I just found something that fits my symptoms more than my diagnosis of AS. I literally stumbled upon it an hour ago and decided to check out these forms to ask about this condition and saw your post. It sounds like you might fit this as well. It’s called Non-Radiographic Axial Spondyloarthritis.

Basically patients with NRAS present outward symptoms consistent with AS, but they show no signs of AS in their X-rays and MRIs (which is my case as well). I’m currently looking for more info, but can’t find much. Seems like NRAS is a pretty recent thing that medical journals and studies have only just begun looking into. For instance I don’t know if it it is just an early form of AS or something a little bit different than AS. I also can’t find anything on patients who (like me) test postitive for HLA B27 and weather or not being HLA B27 positive has the same correlation with NRAS as it does with AS, however what I have found seems to say that the same medications and treatments for AS also help patients with NRAS.

You might want to bring this up with a Rheumatologist, though I don’t know if it would be better to go back to the one of the doctors you’ve already seen, or seek out a third opinion, perhaps with someone who has experience with patients with AS and patients with NRAS.

https://www.ncbi.nlm.nih.gov/pubmed/26897981
http://www.rheumatologynetwork.com/...l-spondyloarthritis-treatment-guidelines
Posted By: SouthernMoss

Re: Differing diagnosis - 05/24/18 11:17 PM

Tim, there are two different ways of classifying spondyloarthritis. AS in the old classification is radiographic axial spondyloarthritis in the new classification. This link explains the two systems of classification.
https://www.spondylitis.org/Types-of-Spondylitis
Posted By: Tim_K

Re: Differing diagnosis - 05/25/18 02:00 AM

Originally Posted by SouthernMoss
Tim, there are two different ways of classifying spondyloarthritis. AS in the old classification is radiographic axial spondyloarthritis in the new classification. This link explains the two systems of classification.
https://www.spondylitis.org/Types-of-Spondylitis


Thanks for pointing that out, a lot of the articles I was finding used Axial Spondyloarthitis and Ankylosing Spondylitis in the same sentence as if they were two different conditions.

Still I find it’s interesting that there is a decent enough population of people with a form of AS that does not show on imaging that a Non-Radiographic form of the disease seems to have recently gained some acceptance in the medical community.
Posted By: SouthernMoss

Re: Differing diagnosis - 05/25/18 03:11 AM

in the past a clinical diagnosis of AS required a specified amount of radiographic damage to the sacroiliac joints. But many of us don't have the required SI joint damage and were diagnosed with undifferentiated spondyloarthritis. Now some rheumatologists will give you a diagnosis of AS without the required SI joint damage, but others won't.

The newer method of classification removes the specific SI joint requirement and simply recognizes radiographic damage wherever it may be. And there is more understanding that doctors shouldn't have to wait for radiographic damage to be present before prescribing biologic treatment.
Posted By: Tacitus

Re: Differing diagnosis - 05/25/18 05:14 AM

Hello, achala:


Ophthalmologist is good one, points out obvious PRE-AS or early AS. It sounds obvious also, but every presentation of AS is different. Treat the AS properly and avoid AAU/iritis in the future and even avoid the eventual permanent skeletal deformity and fusion.

HEALTH,
John
Posted By: achala

Re: Differing diagnosis - 05/25/18 07:47 AM

in some of the papers posted on this site I read NSAIDs are more efficacious in preventing ossification than TNF blockers in early NRAS.
Does anyone know if NSAIDs like Arcoxia or else could also keep Uveitis at bay? How long does it take for the NSAIDs full benefits to kick in?
I suppose trying TNF blockers for NRAS in an early stage is an ultimate solution, after all other options failed?
many thanks in advance.
Posted By: SouthernMoss

Re: Differing diagnosis - 05/26/18 04:39 AM

Everything I've read says biologics do more to prevent disease progression than NSAIDs.

NSAIDs can control uveitis for some people. www.uveitis.org, founded by world renown uveitis specialist Dr Stephen Foster, has a lot of good information on uveitis. This is a link to a document on that site where Dr Foster explains his approach to uveitis treatment, which includes the use of NSAIDs: http://www.uveitis.org/wp-content/uploads/2017/09/Therapeutic-Algorithm-for-Recurrent-Anterior.pdf
Posted By: WhiteCell

Re: Differing diagnosis - 05/26/18 01:47 PM

NSAID for uveitis can control pain however it can also cause delay in treatments. Steroid drops for better and worse can effectively decrease the inflammation but unfortunately (for me) over time can sponsor glaucoma and other eye problems. Not using them however can lead to nerve damage in the eye. After 40 years of battling eye issues I started Remicade and over time the issues subsided. I have not had a flare in the right eye for many many years. That said I use 1 drop of steroid and 1 drop of pressure relieving drop every day. Talk with your opthamologist about NSAIDS would be my thought.
Posted By: RAHMBA

Re: Differing diagnosis - 05/28/18 08:00 PM

Good seminar on SpA & eye issues (Uveitis is covered).
https://www.spondylitis.org/Seminars-and-Webinars/spondylitis-educational-seminar-los-angeles-ca
Posted By: achala

Re: Differing diagnosis - 06/26/18 06:54 PM

I thought I will make a little update on the continuing investigations.
During the past month I ve been continuously on arcoxia 90mg. Somehow lessens the cervical pain.
Stopped swimming as thought the eyes are more prone to flares due to chlor.
Started yoga twice per week + kinetoterapy. Makes me moving but no help as for pain symptoms.
Apart from the cervical pain, creeped up also left Achilles and feel slight pinching in the right.
Went trough colonoscopy after hard episode of diarrhea and discovered red lesions covered in white powder like in terminal ileum. Awaiting biopsy results.
Tried acupuncturA , again no relief.
Reflexoteraphy as my rheumy advised.
Finishing my 3 days apple diet tonight.
But what I am quietly enthusiastic about (first time since 3 months) is the following: I have signed up for some Bowen massage and she is very careful with me knowing my condition. Last Friday after the session I could not turn my head anymore and everything was cracking there while moving. I woke up this morning as usual reddish eye, hell f a neck pain, limping left leg, no mood at all, sleepy as 2 years old, went for another session without hope. Had a little nap there, said thank you, left with no hope. While crossing the street checked right left then right left then again right left, 12 hours later still checking right left, i think I am dreaming. I am scared to go to sleep because I have no pain. Is this possible?
Posted By: achala

Re: Differing diagnosis - 07/09/18 08:07 AM

hello,
I have been waiting for the biopsy results from colonoscopy finally arriving today. However it brought only more confusion for my gastroenterologist.
Initially, she suspected an early Crohn, manifested by occasional red spots covered with white mucus in the small intestine only (no large intestine, duodenum or stomach).

The histopathological examination came back with: suspicion of Eosinophilic Gastroenteritis.
Doctor does not understand the results at this point and she has to consult.

From what I read on the internet so far is that Eosinophilic Gastroenteritis is triggered by some food allergens and leads to eosinophilic infiltration of gastrointestinal tract.
More here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3746377/

Anyone ever heard of this in or without relation to AS?
Do you reckon might be caused by NSAIDS?
thank you
Posted By: Winston

Re: Differing diagnosis - 07/09/18 12:03 PM

I know someone who has eosinophilic esophagitis. In his case, it's being treated as an autoimmune disease, as opposed to a chronic allergic condition. Never heard of it in relation to AS or NSAIDs.
Posted By: achala

Re: Differing diagnosis - 07/10/18 11:28 AM

Originally Posted by Winston
I know someone who has eosinophilic esophagitis. In his case, it's being treated as an autoimmune disease, as opposed to a chronic allergic condition. Never heard of it in relation to AS or NSAIDs.


perhaps found something here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1002150/pdf/annrheumd00284-0051.pdf
Posted By: achala

Re: Differing diagnosis - 08/20/18 07:17 PM

hello again,
I am being put on Methylprednisolone again + Tobradex/Tropicamida for another episode of Iritis.
Meantime I dropped Arcoxia and started the following Combo to address also my Eosinophilic gastritis: Budenofalk/Montelukast.

+once in few days I take Vimovo (Celebrex)for cervical pain.

I am also suppose to start Sulfalazine, but had to postpone due to some plans. My main Rheumy said if Sulfalazine wont work we think about biologic.
Meantime, I met another Rheumy who told me Sulfalazine will not work for Achilles enthesis (which i developed in addition quite recently), as current view states enthesis is not a peripheral SpA, but an axial. ?

Question: Sulfalazine can work for Uveitis/Achilles enthesis? Or shall I go another route and try to get Humira for the Uveitis?
Question 2: which biologic would work on all of the stuff I currently posses: Uveitis/cervical pain/Achilles enthesis/Eosinophilic gastritis
Question 3: Am I to naive thinking I can stop AS, by targeting Eosinophilic gastritis alone?

PS. i am also taking some supplements like: msm/shark cartilage/turmeric/vit D/probiotics
Posted By: achala

Re: Differing diagnosis - 11/26/18 02:03 PM

hello,
I received results from MRI spine today. It is a google translation from foreign language:

Minimal edema modifications at the previous angles of T5-T8, T10, T11, L1, L2 vertebral bodies, on millimeter, suggesting Romanus active lesions.
Small areas of bone marrow conversion at the angles anterior and posterior thoraco-lumbar vertebral bodies, suggesting chronic changes.
Intermediate C5-C6 posterior interfate arthritis and L3-L4 left.
Prolaps L5 without foraminal stenosis.

could you please indicate to your knowledge how serious/urgent it is?
thank you
Posted By: SouthernMoss

Re: Differing diagnosis - 11/26/18 03:50 PM

Romanus lesions are a result of AS or other forms of spondyloarthritis. I'm not a medical professional, so I can't say how serious or urgent your case is. If these were my MRI results, I would be asking the rheumatologist about biologics.
Posted By: achala

Re: Differing diagnosis - 12/05/18 02:41 PM

Originally Posted by SouthernMoss
I would be asking the rheumatologist about biologics.

And I did... for which I received a stern lecture on trust in relations between doctor and patient.
Posted By: Banana

Re: Differing diagnosis - 12/06/18 07:57 PM

All the recent research indicates early aggressive treatment. The sulfadine is considered mild treatment. Maybe you have to try a cheap one first? For your insurance?
Posted By: SouthernMoss

Re: Differing diagnosis - 12/06/18 08:28 PM

Originally Posted by achala
Originally Posted by SouthernMoss
I would be asking the rheumatologist about biologics.

And I did... for which I received a stern lecture on trust in relations between doctor and patient.


Sounds like your rheumy felt a little threatened or thought you were trying to play doctor. I am assuming you are not in the USA because of your reference to Google translation. Maybe the culture is different in your country. Even in the US you have to be careful with some doctors not to be too assertive, because they will take offense.
Posted By: seymour

Re: Differing diagnosis - 12/06/18 09:16 PM

Originally Posted by achala
Originally Posted by SouthernMoss
I would be asking the rheumatologist about biologics.

And I did... for which I received a stern lecture on trust in relations between doctor and patient.


Pathetic. Change doctor if you can. There's no reason why they should give you a lecture when you ask about a treatment option.
Posted By: WhiteCell

Re: Differing diagnosis - 12/07/18 02:14 AM

It is cultural most likely.
Posted By: achala

Re: Differing diagnosis - 12/11/18 09:05 PM

Well doctor thinks at this stage is worthy to keep continuing with sulfasalazine as the inflammatory markers went down in recent blood tests considering Humira is risky in side effects and does not always work
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