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Diagnosed Ankylosing Spondylitis:Very bad condition

Posted , 14 users are following.

neha70568
neha70568

I am 29 yr old girl, i used to have lower back pain since 7 years but recently i got to know from reumotologist that i have ankylosing spondylitis.I am bed rest and could not walk .

I went to chiropractor, accupucture, physiotherapist but nothing works for me.i am on medication -diclo eapide50mg twice a day.Nepeoxin didnt help me either.

I do streching whenever possible.

But living this life looks impossible to me.

I am taking turmuric and lemon in my diet every morning but nothing is giving me permanent releif.

I need somebody’s help to guide me what should i do to atleast live a normal life.

0 likes, 17 replies

17 Replies

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  • lilly29834
    lilly29834 neha70568

    Posted

    Hello Neha,

    It does seem pretty bad for you right now but try to keep active with normal activities and talk to your rheumatologist about being on a biologic drug even if it is just for a short time.

  • beat_AS
    beat_AS neha70568

    Posted

    Hi you must consult a good rheumatologist and maybe start methotrexate on a weekly basis and or tnf blockers I.e Remicade... all the best 
  • yanaras_mom
    yanaras_mom neha70568

    Posted

    I’m so sorry, I’m 36 and I need 2 hips etc so I understand your struggle if you need a friend I’m here for you, I know trying to excersize is helpful plus are you on. Biologic yet?
  • Jojo80
    Jojo80 neha70568

    Posted

    Hi there, sorry to hear of your diagnosis and health problems. I’m 37ys, i was only diagnosed with AS last summer after a few years of back pain.  I was initillay prescribed naproxen but had stomach cramps with this so was put on another tablet but that didn’t help. 

    My consultant applied for biologics which was approved and I have been taking Benepali weekly injections since December. I have definitely felt improvement, I sleep without waking up in pain, I don’t feel as tired as before, I still get pains here and there which I believe is associated to AS but I also have slipped discs in neck so a lot of my pain is associated to this. 

    Try and request biological treatment, there are risks but if this outways the pain and quality of life. All the best

  • gloria55119
    gloria55119 neha70568

    Posted

    Hello, I'm so sorry for you and we all know what it's like to lose your normal life and that feeling adds to the pain because stress is one of the the things that trigger pain. Try to find the right medication and an understanding specialist. I have found that hot packs do help with the pain or even a hot water bottle wrapped in a cloth so it doesn't burn you. Hot showers or a bath are great if you can manage it too. You can also use Turmeric as a compress for pain. Mix it up with a tiny bit of coconut oil and rub or smooth it on the area, you may turn a bit yellow for a while where you have applied the compress but who cares about that if the compress works. The most important thing is get the right medication please. I wish you well and send you a gentle hug. G

  • garyjm3617
    garyjm3617 neha70568

    Posted

    neha like the other posts need get on a DMARD med or biologic. I'm currently on Consentyx, just started. Had issues with Humira. AS does get u down my 37th year. Definately need get moving. Might take a Dr injection in effected joint(s) like lidocaine or what's best for you. Temporary pain mgmt get you going till AS drugs can take hold. It does get better the more you learn about AS and about different options (many). Hope u improve soon.

    • lee1963
      lee1963 garyjm3617

      Posted

      Hi garyjm...How long have you been on Cosentyx? Any side effects so far and how are injections? I have been recently dx with AS and have been prescribed Cosentyx. Currently in a boot and crutches...can’t walk on on. 
    • garyjm3617
      garyjm3617 lee1963

      Posted

      lee sorry for delay, been on Cosentyx for little over two months. You do the loading phase, shot a week for 5 weeks then shot every 4 weeks. Use give shot in stomach, but changed to thigh. Dr said drug gets in system faster via muscle fibers. To date, little improvement. Dr pprescribed tramodol until Cosentyx "kicks" in body which med guide says study showed 4 months. My AS has stayed in Sacral Joints with left partially fused. I personally prefer pre-filled syringe in lieu of pen. Best

    • ted07101
      ted07101 garyjm3617

      Posted

      my doctor ask me to use that medication how it work on you ? the loading is 4 weeks , i use ENBREL 50 on stomach i get allergic reaction , i try HUMIRA no do anything unlike ENBREL DO SOMETHING it work , consentyx work on IL-17 A NO ON TNF protein as ENBREL

      USE FOR TNF BLOKer A they do not know what cause inflammation , how you feel on consentyx ? do work ? just asking

  • khairnar
    khairnar neha70568

    Posted

    admin please approve my previous post, neha is from india and she will definitely get to knoq about local good doctor and medicine with cost
  • ted07101
    ted07101 neha70568

    Posted

    This disorder attack young most i was 24 when I start I am 61 now in 1984 I was on predisolone that is what they have then in the 90s was sulphazaline , in 2012 I start ENBREL 50 sound it works today I see my reumatologist she say to me inflammation is cause by certain factors like TNF and few others , she explain we do not know what cause the inflammation the specific gene or the activation so we try different TNF blockers on different people , I try HUMIRA to nothing , she ask me to go on congentyx 150 for 4 weeks and then ones a month , this condition is blood disorder the gene who start that is called HLAB27 they do some tests like CRP CRS Those two markers are show how inflammation exist in the blood , consentyx work on IL 25 something like that , plus they are work to found the right cause of inflammation one everyone , I hope they do found something so we avoid the expirement , until we found the correct medication , I was use and use Celebrex 100 plus sulphazaline 500 direct release it work caution should be taken to avoid over suppress the immune system , it is no easy disorder to deal with , just be happy Follow with your doctor and we all hope the medical profession they do found something better kind regards 
  • Jakara55
    Jakara55 neha70568

    Posted

    Hi Neha,

     

    i have been recently diagnosed with Spondyloarthritis. I believe its the same as yours. I noticed you posted 2 months ago. What successes if any have you had with Meds. I am on 200 mg of Celebrex twice a day and it makes me feel horrible. I am a little freaked out myself and everything hurts constantly. 

    • ted07101
      ted07101 Jakara55

      Posted

      celebrex 200 to much i use sulphazaline 500 with celebrex 100 but they no work that well try ENBREL 50 or REMICADE OR HUMIRA OR CONSENTYX 150' ask a reunatologist ro help you the rest will no work as well , the biologicals injected subcoutanious some are in pen some in prefil injection when i start use ENBREL I FEEL DIRECT THE DIFFERENCE many try different things ankylosing spondylitis is serious no cure disorder is a blood disorder see a reumatologist are specialists for that and they help you kind regards

  • Sockpim
    Sockpim neha70568

    Posted

    What's your general diet like? Have you researched food and drinks that cause inflmation?

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