Ankylosing Spondylitis and lung disease?

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I am certain I have Ankylosing Spondylitis that has just not been co firmed yet with MRI. I am HLA B27 positive and have had SI joint pain for many years and also anterior uveitis. X-ray does not show SI inflammation so I will have MRI soon. I was recently diagnosed with emphysema and am a non smoker. No past exposures and genetic cause is negative. Does anyone else with AK have lung disease? If so - what is your story and how has the lung disease progressed?

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  • Posted

    I am too hla b27+ but mri, xray, blood tests normal since 3 years. when u did your last mri? what medicine you are talking?

    i am in too much pain and whole body stiffness since 4 years.

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    • Posted

      I am 56 years old and my symptoms began in my 20s after I had serious intestinal infection when traveling in west Africa. Initially I had very painful L knee and uveitis and was on oral prednisone for 6 months. Symptoms gradually went away for the most part for a few years. Then I started having back pain and stiffness that I would wake up with and improve with exercise. This has been the case off and on for many years. Now I have daily L SI joint pain and enthesiitis on the L hip bone. I have seen doctors and rheumatologist several times over the years and X-ray always negative. MRI several years ago was negative. HLA B27 always positive. I am an extremely active and healthy person in general and eat an anti inflammatory diet with no sugar, alcohol or grains. I take fish oil and tumeric daily. I walk and run regularly. I think these have kept my symptoms manageable for the most part with flares that come and go. In the last year the SI pain and stiffness has been more persistent. And now I have been diagnosed with emphysema co firmed in X-ray and CT and spirometer tests. I do not smoke. I am going to see rheumatologist again after several years and will have MRI for the SI joints. I seem to manage my SI pain with diet and exercise and the supplements I mentioned and then take aspirin or ibuprofen when it flares up and is more painful. But what I am curious about is whether the emphysema is related to all of this?bit seems strange to me and I suspect there is some relationship since the emphysema can’t be explained by the usual causes. 
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    • Posted

      Predisolone is no recommended for long term can suppress the adrenals , it is no safe drug , regarding the lung issue talk to lung spesialist, but if you have autoimmune disorder the whore cells attack anywhere without notice this is what is going on in this disorder , in my case AS was diagnosed plus uveitis severe in my 24 years now I am older , the Enbrel is one who work well done use remicade a TNF blocker I use also sulphazaline plus Celebrex  it work the combination but no predisolone a corticosteroid for long term That medication no should stop abrupt slow , ask your lung spesialist and your reumatologist ask then to do ESR CRP if that is high then you have inflammation within , the diet may help little exercise help also but the immune will attack again when like without notice , that is how this disorder is , I stop Enbrel for 3 months I become very sick and painful I inject again and the problem solved like a miracle works fast some TNF blockers no work well with some I try the HUMIRA no work with me but the Enbrel 50 does work but always keep an eye with your doctor, no what the so and so do , or using we all are different and unique with different enzymes blood type etc follow the advice of your doctor the HLA B27 is a gene is it is associated with inflammation it is blood disorder keep close investigation with your reumatologist or immune spesialist regards 
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    • Posted

      Excuse some wrong spellings on my words as the iPhone change the spelling and I see after 
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    • Posted

      No problem i do have the same issue and i know how hard this  disorder is , knowledge is no helpful what is hempful to ask thw reunatologist to give you something to control the AS the immune will attack without warning it will attack thw joints the back of your rib cage hard to breath it will artack your lower spine you feel the pain it is terrible , i try all essiac tea vitamins B12 injections who do help the red cells , but as Enbrel work no others work , however you should

      No have any infection if they start you in TNF blockers the rest on AS NO work , but ask your reumatologist you need control no some understading as everyone is different , in blood type etc , if you control it that is cure , beetroot have intiflamatory effect watermellon pineapple , try the best you can also walk exercise swimming is well

      Plus remedial massage may help you i do all that regards 

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  • Posted

    I have ak in my full spine hips ankles shoulders wrist and knees have fusion at the first rib waiting both hip replacement limited movement in rest of my joints I get short of breath sometimes am told its because of my ribs maybe that might be some of your simptoms I not sure getting a MRI would be a good start
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  • Posted

    Ask your reumatologist to do ESR CRP if those are high then you do have inflammation or autoimmune disorder , i have found Enbrel a TNF blocker work well , but discuss this with your reumatologist because what may work on some may no work on others , HLAB27 means you habe autoimmune disorder same as i do have the MRI may show different things ask for ESR CRP AND FULL BLOOD COUNT , your doctior knows what to , it is a blood disorder this no cure exist but control do exiSt take care 
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  • Posted

    Kimberly had a hard time with my diagnosis of AS some 35 yrs ago. My issue was Radiologist blew correct reading of picture. U look for shadows. My Rhumy had me bring in pictures had showed me in 5 min the shadows (AS). Maybe another set of eyes on picture. I have lung disease diagnosed in 2015 by Cat scan. COPD. But I was smoker. Dr told me up to 25% of COPD not smoking related. Genetic, environmental etc. Hope you can get good diagnosis and get treatment. If you get treated for AS by pills, like Indocin, stay on top of labs. Indocin bout trashed my kidneys.
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    • Posted

      You must understand what you have is blood disorder genetic inherited , the tests may be okay serve a purpose to diagnose inflammation who cause all trouble the reumatologist can give you a biological drug like ENBREL 50 or remicade infusion last one month , that will stop the TNF protein in your blood who make the immune to attack the bones joints spine etc, before you enter to biological medications ask the doctor to test you for TB LFT ESR CRP , If that is clear with your doctor use a biological medication that will help you fast , in my case I use ENBREL 50 I inject it myself subcoutanious , I also use B12 injection to elavate the blood count , the HLAB27 is a gene present it in mostly young cacausian males and attack spine eyes the inflammation is the cause of that as immune mistaken attack the body ,very complex situation hard to treat but is possible, to many tests no needed ESR CRP is show how much inflammation exist within the blood , some use HUMIRA PER TWO WEEKS a mono clone antibody TNF blocker in my case was no work as ENBREL does I try many things none work except the biological, MRI etc show only the damage , you need to control the immune ,there is no cure from this disorder, in my case start 24 years old I am now 61 I manage okay , predisolone is no recommend for long time. The TNF blockers can be used with your reumatologist under his her supervision, certain foods need to be avoided is well to drop inflammation, it is genetic inherited disorder no good disorder and many have it , ask your doctor to assist you , get well with positive mind , Indocid and all those no work well as the biological family ask your doctor take care 
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    • Posted

      Thanks for asking. For the most part I can do most things. Humira helped with AS but Dr had me quit for melanoma diagnosis. So getting sore and limited movement. See him 7/10 for consult.
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  • Posted

    Hi Kimberly.  I have AS and was diagnosed in my 30’s after a bout of uveitis.  Lab work showed positive Hlab27.  I had been started on prednisone and after that they had me on methotrexate and strong anti-inflammatory.  Methotrexate made my liver enzymes elevate, so my Rhuematologist put me on Enbrel instead.  The Enbrel injections didn’t seem to help so they switched me to Humira.  I’ve been on the Humira for at least 6 years.  It helps but still have a lot of joint/back pain and stiffness.  In 2016 I was diagnosed with multiple modules in both lungs (not a smoker) which are growing slowly.  They have determined it’s inflammatory nodules.  AS is definitely no fun and I think that if you’re under the care of good specialists that monitor you, this will help you have the best outcome.  Good luck and hang in there.
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    • Posted

      If lung infection exist TNF blockers no tk be used until infection go , TNF blockers suppress and modify the immune please stay close to your reumatologist , merhotraxate no work on spine AS some celebrex may work but the TNF blockers do the job , side edfects exist on all medications just stay close to your own doctor and eat things who are good avoid sweet sugar things etc alkaline things can help the inflammation , eat according to your blood type 
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    • Posted

      They’ve been monitoring the nodules per routine scans.  They are growing very slowly.  I have some shortness of breath and no changes in my sleep apnea.  I have asthma too but it hasn’t seemed to change any.  Hope that you continue to follow up with your doctors.
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