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Is there life after ReA?

Posted , 4 users are following.

ana04514
ana04514

Hi everyone,

I'm happy to discover this site, I want to share my experience with this disease an hope for some answers or similiar experiences.

It all started with an injured left knee last November , that wouldn't heal and started to get artrithis symptomps, becouse of my injury it took doctors almost 3 months to diagnoste reactive artrithis caused by urinary infection.

For 3 months I tried anti-inflamatory drogs without improvement, I took more test, HLA b27 prove to be positive with all the Reum indicators negative.

For about 4 months I'm on Sulfhsalzyne and Prednisone but no improvement, my doctors tells me to consider TNF - biological meds.

I'm afraid of the secondary effects, but on the other hand we all now how frustrating can be to wait for improvement and hope for the best.

Like many others of you I used to be an active person fitness and dancing an now I don't know if my life will ever be the same again, the knee is not very swallon, but I can walk only small distences.

Please share your experience, how long did it take for you in months to  get well, did the joints were like before?

Has anyone tried TNF drogss, how did it work?

I'm very scared of this disease

 

0 likes, 6 replies

6 Replies

  • katenyc5
    katenyc5 ana04514

    Posted

    Hi Ana,

    I have been there. I suffered for about a year. Also was on Sulfasalazine which for me did not help. I was about to go on Humira, one of the biologic drugs, and it got better. I was good for a few months and then it flared up again and I got very discouraged. Started looking at Humira again. Then it got better again.

    I used to be terrified of the biologic drugs but not any longer. I feel that if needed to control symptoms, then it is good they are out there. For me, I changed my diet. I have almost no gluten and I try to stay away from anything that can cause inflammation. I eat a lot of whole foods now and drink Kombucha, which is a probiotic drink, every day. I also know for me that stress plays a huge role so I try to keep that in control.

    I did do a blood test to see what foods I am sensitive to. I tried to cover all of my bases. I am good now and once in a while my left knee is cranky and I can feel like a mini flare up coming on but it goes away.

    I have HLA B27 too. My rheumatologist tells me this is the best of all the rheum conditions to have because it is easier to go into remission.

    You can try to remove gluten or inflammatory foods in your diet and see how that goes. I was also working with a woman who had this condition for years and cured herself through using a combination of diet (eliminating food sensitivities) and a certain type of meditation. I believe in the mind body connection more than ever and even though we have this annoying gene there are things we can do. My aim is to get this into remission for good.

    Please let me know how you are doing. I know how upsetting this is when you are normally an active person. It will get better, however. There are options out there.

    • ana04514
      ana04514 katenyc5

      Posted

      Hi Kate,

      Thank you for your response, it's so good knowing that there are people who got overe this, there are frithening stories and only a few positive ones.

      I will talk with my reumi in a few days about the options.

      I would also consider alimentation thoug in this point I try to eat healty as I can and I also trying some homeopat suplliments.

      I hope next post will be wih good news

    • yankeeinrussia
      yankeeinrussia ana04514

      Posted

      I think that the reason that you have heard more negative stories than positive is that the people who have had a good recovery from ReA don't tend to be the ones who frequent the forums. I do have a positive story though. 2 years ago I had ReA with sacroiliitis, a hugely swollen knee, bursitis in my other knee, tendinitis in my foot, and pain along my spine. It took at least 2 months to get a proper diagnosis. I didn't take any medicine other than a short course of steroids for the knee swelling and meloxicam (one pill a day for a month, then tapering off to nothing after two months). Within four months after the initial onset of symptoms, I was more or less pain free. Within 6 months I was back to running. Now two years later I haven't had any relapse. Your story will be different from mine and from others on this forum, but there is the potential for complete healing, so don't despair. Write to me if you want any more details.
    • ana04514
      ana04514 yankeeinrussia

      Posted

      Hi, there,

      Wow, You are si lucky getting out of this nasty dissease, it seems to me more and more that artrithis has 1,000,000 faces for each individual.I suppose you don't have HLA otherwise is hard to get ride of it. In my case things are complicated because I had an injury at my knee.

      Either way if I'll get well I would never take walking for granted.

    • yankeeinrussia
      yankeeinrussia ana04514

      Posted

      I do have HLA-B27, so I don't think that is the difference. I am so sorry for what you are going through. I hope that things will get improve for you too.
    • operasinger
      operasinger yankeeinrussia

      Posted

      Uhhhhh WOW! All the symptoms you describe is like I am reading about myself just add condrititis. At first they thought it was RA, then PsA, then Spondylitis and last week it has changed to ReA. Regardless, I have been on 26mg of Medrol for 6 months and entering month 2 of Enbrel and NOW they want to add Methotrexate to begin tapering the Medrol. BTW...I am HLA neg and nothing has shown on X-rays, CTs or bloodwork. You are giving me hope. I believe the Enbrel is working since all my blood work and inflammation markers are normal. Now lets hope for the fatigue and thoracic pain to leave. I've been dealing with this for just 6 months...it started with swelling in my knee due to gout and then it took off from there with the rest of the symptoms you had. Give me some details!  
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