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I have pain in lower back and diagnosed with HlA B27

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Prash2003
Prash2003

Its been 2 weeks , that I am suffering from pain in lower back . the report says its because of the developement of HLA B27 , ankylosing spondylitis. The doctors are giving steroids , what to do , what is proper care for this. I am 16 years.  Please help

0 likes, 9 replies

9 Replies

  • lilian05079
    lilian05079 Prash2003

    Posted

    Hi Prash2003

    There are other medication you can take for ASp.. Overtime steroids can cause awful side effects.....ask your doc for alternative treatment...best wishes...

  • gloria55119
    gloria55119 Prash2003

    Posted

    Hello Prash...do you have an adult you can talk to you...apart from us here that is. You need to have some one to one support. Have you been referred to a specialist yet and have you had X Rays or an MRI. You must see someone who is familiar with Ankylosing Spondilitis. Can you talk to another doctor who knows how to treat you on this. It can be very painful and I sympathise with you so much. Don't worry we are here to help you. I am an old Great Grandmother so you can talk to me more if you like. Ive had this for many years so I do know quite a lot. First you must get some help...mother or father or sister maybe. Get back to me here and I will try to help you. Big hugs...Gloria

    • Prash2003
      Prash2003 gloria55119

      Posted

      First of all , Thank you for such a warm reply aunt. Yes I have my father mother with me to take care and I am done with X ray , MRI , other tests , reports and finally I am diagnosed with this disease and found HLA B27 inside my body. You have been suffering for years so I would like you to share your experience and guide me to come out of this . please tell me what to do beside taking medicines which contains steroids . Can you suggest me some good medicines which I should take , or tell me some excercise or therapy or something else . which food should I take more , which not . how should I change my daily lifestyle to get proper care . Please help as much as you can . Looking forward for a positive reply.
    • gloria55119
      gloria55119 Prash2003

      Posted

      Hello again....I can only tell you what helped me and what didn't. Hot packs which you heat in the microwave..then put on the painful areas. Hot showers also help. A good nights sleep is important as AS has a habit of disturbing your sleep patterns...so maybe get something for sleep if you need to. If you can, keep moving...especially in the morning when you can be stiff and very uncomfortable. Once you "get going" the pain and stiffness will subside. I do not recommend steroids especially for one so young. There are many other pain medications like, Tramadol for extreme pain. Acupuncture helped me..so give it a try. I'm not sure that food types will make any real difference to your condition...just eat what you like the most. Of course fruit and vegetables are good for you..but I don't suggest taking Calcium supplements as it can make a problem with bones in the spine that "grow" spurs on them. Calcium encourages bone growth but not the type you need. If you have muscle spasms...use hot packs and gentle massage on muscles only...don't be tempted to have a strong massage..it can make things worse.There is a lot of info on the "net" so look up everything you can to get a better understanding of this disease...you will learn so much there. I do hope things improve for you...let us know how you go with it all...Hugs again..Gloria

  • lilian05079
    lilian05079 Prash2003

    Posted

    Hi Prash2003

    Forgot to mention it is also hard to get off steroids as they suppress your adrenals and cortisol and it takes a while to taper off steroids and get your adrenals to start working again....just ask for alternative pain management.. did you have tests for inflammation. Steroids are usually only prescribed for inflammation....

    • Prash2003
      Prash2003 lilian05079

      Posted

      First of all thank you very much for replying in the discussion forum . Regarding the disease I would like to tell you that , Yes I have consulted a doctor and they are just giving steroids to kill the pain . I can consult another doctor but the problem is that most of the doctors dont have any proper solution to this disease , so they just give steroids to kill the pain , and I Know steroids are very harmful for body , so I just want any other solution for this like exercise , physiotherapy,accupressure , diet chart , what to eat , what not to eat  OR any other medicines that doesnt contain steroids . So ,  please can you help me with this in any way , so that I can get a better solution to fight against this . waiting for your positive reply , Thanks.
    • lilian05079
      lilian05079 Prash2003

      Posted

      Hi Prash2003

      briana73 has touched on alternative medication such as NSAIDS non steroidal anti-inflammatory drugs though these can irritate your stomach....also paracetamol and tramadol together..also the biological injectable drugs....also over the counter painkillers...these alternative meds would be far better than steroids for one so young as you. Even for older people they are not good. There are certain diseases where steroids are absolutely necessary, but you can manage your pain with other meds other than steroids...and as briana73 mentioned get yourself checked for the HLAB27 gene for AS..my very best wishes yo you....

  • briana73
    briana73 Prash2003

    Posted

    Hello Prash. Sorry to hear that you were diagnosed with AS. I must say I am quite surprised that a doctor even thought to test you at such a young age. This is a good thing though to have a diagnosis so young. I have been suffering with AS since 19 years old and I was finally tested at age 24 for HLAB27. Even though I had so many symptoms, positive blood work and my mom has AS, I was not formally diagnosed and started to receive proper treatment until age 43. Because I have an atypical presentation with AS starting in my neck it was very challenging to finally find the right doctor to take the time and really listen. Steroids should only be given for up to a 2 week period for an acute flare up. Not to be used for the chronic pain with AS. You need to be on a NSAID (non-steroid anti inflammatory drug). These are available by prescription from your doctor but can also be purchased at the drug store such as ibuprofen and Naproxen. Also a drug prescribed by your doctor would be sulfasalazine which is to slow the progress of AS. After some time on both the NSAID and sulfasalazine your doctor should consider placing you on a biologic injectable medication that you take once a week to slow the progress of AS. Some examples are Enbrel or Humira. The whole thing with AS is it will not go away. The only thing to do is manage flare ups and slow progression as well as manage daily symptoms. Movement is very helpful in AS... prolonged sitting, standing, lying down makes the stiffness and pain worse. 2 very helpful forms of exercise are yoga and swimming because it keeps all the joints moving without any hard impact/stress on joints. As for diet, research anti inflammatory diet and start to eliminate certain foods that can cause inflammation. Processed foods, sugar, dairy, red meat, gluten(anything containing wheat) are known inflammatory foods. Focus on eating a mainly plant based diet and while foods. This has helped me tremendously. Of course I cheat once in a while if I'm really craving for a  food, but in my everyday eating I follow these rules. Chronic pain is something that only those of experiencing it truly understand how it affects your daily life and mind set. Please feel free to reach out to me for questions/support. 😊

  • gloria55119
    gloria55119 Prash2003

    Posted

    Hiya..I have read and agree with all the other posts...but I thought I would just mention swimming..I'd love to have a heated pool to swim in but I can't even get into our bath which is huge....can't get in or out of it...I'd die alone in the bath if nobody came to check on me lol..!  Anyway..try swimming gently...Hugs..G

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