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Introducing myself #279921
02/05/18 09:04 PM
02/05/18 09:04 PM
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BeaC Offline OP
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Hello. I am a 65 yo female, so I’m older than a lot of you. However, I have had symptoms of something which I believe might be a type of spondylitis since I was about 40. I won’t list all my symptoms here, but will just say I have done a ton of research and am tired of treating symptoms one by one. I have had back surgery, cortisone shots in my wrists, worn braces, etc., etc. It’s time to get to the root of what is causing all of these things. I had my DNA tested by ancestry . com and sent the results to Promethease for a health report. I do have two HLA B27 markers. I know that doesn’t necessarily mean I have AS or another type of spondylitis, but it did answer some questions for me. I also have numerous markers for rheumatoid arthritis. I’ve had blood tests done for that twice and both times were negative. That doesn’t rule it out completely, but I feel my symptoms are more closely aligned to spondylitis. Has anyone sent their DNA results to a health testing company? Will my positive HLA B27 result give me a positive result in a blood test? Because of a lot of pain I am having right now, I am going to my GP tomorrow and hope he will send me to a rheumatologist. I want to be armed with as much info as possible. Thanks in advance.

Re: Introducing myself [Re: BeaC] #279922
02/05/18 09:24 PM
02/05/18 09:24 PM
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NY, USA
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kjb Offline
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Bea,

Sorry to hear you are in so much pain. I too went a long time without a diagnosis. I cant say if you have spondylitis or not and no a blood test wont give you a positive diagnosis, some people are HLA B27 positive and never get the disease. I think you are on the right track with going to the GP and asking for a referral to a Rheumatologist. I have never sent my DNA to a health testing company, would love to hear how you make out with that. It would be interesting.

I hope you get some answers soon, and some relief from your pain. Keep us updated on how you make out.

KJB

Re: Introducing myself [Re: BeaC] #279923
02/05/18 09:35 PM
02/05/18 09:35 PM
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BeaC Offline OP
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Thank you, kjb! The sympathy is truly appreciated. My question regarding the HLA B27 marker was actually since it shows up in my DNA, will it show up in a blood test, not that it means I definitely have AS. Seems like a no brainer that it would, but the RA markers in my DNA do not show up or maybe I have not been tested for those specifically. I hope all that makes sense. At any rate, I am anxious to find out what is going on. Edited for clarification: Okay , so I know HLA B27 shows up in blood tests. What I’m trying to ask and doing a horrible job of it, is if the two markers showing up on my DNA test will appear in a blood test. Is there something that must trigger them or make them manifest in some way? Do they just hang around on a chromosome waving as the world goes by and make the leap to a blood test? So sorry to be vague on my first post, but I don’t know how else to explain it. Okay, so just shoot me now. 😉😆

Last edited by BeaC; 02/05/18 09:58 PM. Reason: Clarification
Re: Introducing myself [Re: BeaC] #279924
02/05/18 10:33 PM
02/05/18 10:33 PM
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ThreeG Offline
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Welcome!

I see what you are saying, I think. The blood test that a rheumatologist will do for HLA B27 is a genetic test. So, if it was in your DNA results, that test will be positive. Everyone has some version of HLA. Those of use who have B27 are more prone to spondylitis, but we would test positive for HLA-B27 even in childhood and even if we will never develop spondylitis. That's different from say rheumatoid factor, which (with rare exception, I think) only shows up in the blood when there is disease activity. That said, I'm sure there are genetic markers associated with RA that a person could have without ever developing the disease and those would not cause a positive rheumatoid factor test. They aren't used to diagnose RA in the way that HLA B27 can be a piece of a spondylitis diagnosis.

I hope you find a great rheumatologist who can sort it all out for you. There is a lot of good information here as well. I am relatively new to this myself, and I have benefited a lot from the knowledge of others.

Re: Introducing myself [Re: BeaC] #279925
02/05/18 10:59 PM
02/05/18 10:59 PM
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BeaC Offline OP
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Yes, I believe you got what I was trying to say. I understand exactly what you are saying about the RA markers. Thanks so much for the well wishes, too.

Re: Introducing myself [Re: BeaC] #279926
02/06/18 01:27 AM
02/06/18 01:27 AM
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Big hello! Sorry, about your suffering. Though I suffered for many years, I didn't get diagnosed or treated until my 40's. It had been mild but when menopause hit it got a lot worse. It took me 4 or 5 rheumys till one would listen. My SED rate is normal or high normal and tested negative for the RA test.

I don't think you should bring up your DNA test. You goal is to see a rhuemy, right? A good one. Describe your symtoms. Are you stiff when you wake up? in the middle of the night? Is the pain worse in the morning? Does exersise help? If you take NSAIDs continuously for a couple days, does that help?


I say don't mention the test, unless you can bring it up AFTER you discuss your symptoms. Because sometimes they ignore women, AS tends to happen to younger people so you might be disbelieved. But even if it is RA, your goal is a rhuemy and treatment. Plus, many drs are tired of the whole google thing, now there is DNA

Good luck, and I hope it goes well for you.


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Introducing myself [Re: BeaC] #279928
02/06/18 02:09 AM
02/06/18 02:09 AM
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BeaC Offline OP
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Hi there, Banana. Oh no, no intention of mentioning DNA test. I understand about Google, too. My GP often asks if I’ve already consulted “Dr. Google,” but I’ve known him a long time and can say pretty much what I want. I’m also a retired RN, so sometimes I give it right back to him. This has got me totally puzzled though. I was diagnosed with fibromyalgia several years ago, but I’ve never been comfortable with that diagnosis. I have had lower back pain so bad it was almost impossible to turn over in bed without grabbing the side of the mattress for support. It was always attributed to DDD or something else though. And yes, morning stiffness is an issue. At the moment and more recently, I have severe mid back pain that radiates around to the sides of my ribs. It is relieved a little bit by ibuprofen and my trusty heating pad. I also take Tramadol which doesn’t do much alone but combined with ibuprofen is somewhat helpful. Moving around does seem to help a little, but just standing still is impossible. I get shooting pains down my legs and my feet go numb. The left is worse than the right. I had surgery two years ago on the right, but some of the same symptoms are returning. I could fill up this board with other symptoms, but at the present time, the midback pain is my biggest complaint.
.

Re: Introducing myself [Re: BeaC] #279929
02/06/18 03:11 PM
02/06/18 03:11 PM
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BeaC, welcome. I hope you get some answers soon. As for the blood test, spondylitis is a seronegative arthritis, meaning there is no auto-antibody detectable by a blood test. Examples of auto-antibodies are rheumatoid factor, which is usually present when you have rheumatoid arthritis, and ANA (anti-nuclear antibody), which is usually present if you have lupus. The only blood test specific for spondylitis is the genetic test for HLA-B27, but, as others have noted, having HLA-B27 does not mean you have spondylitis. The overwhelming majority of people with HLA-B27 will never develop one of the diseases associated with it. So the genetic test is not diagnostic; it's just a clue that doctors can use to help make some sense of the symptoms you are reporting. A rheumatologist (and likely your GP) would also run tests to detect inflammation -- ESR (erythrocyte sedimentation rate) and CRP (c-reactive protein) -- as well as a CBC (complete blood count). In many cases, ESR and CRP are normal in people with spondylitis, but the inflammation will show up on the CBC in the form of an elevated or abnormal white blood cell count. Hope this helps.

Re: Introducing myself [Re: BeaC] #279934
02/06/18 09:42 PM
02/06/18 09:42 PM
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Welcome, BeaC. How did your visit with the GP go? Were you able to get a referral to a rheumatologist?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Introducing myself [Re: BeaC] #279936
02/06/18 11:36 PM
02/06/18 11:36 PM
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BeaC Offline OP
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Yes! I have an appointment in two weeks. My GP actually brought up AS when we discussed my symptoms. I had some blood work and x-rays done. I feel like we are on the right track. Just coming here and posting has helped a lot already. Thanks to all for the replies.

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