It appears to me!

Posted , 13 users are following.

Reading members posts It appears once you have been diagnosed with RA you have it for life, there is no getting over it and there is nothing that you can do or take that will remove the pain or return you to your previous life.   Please tell me this isn't true, are there any success stories out there - any at all?

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14 Replies

  • Posted

    I have had RA for 10 years, I was started on Humira, a biologic, soon after my diagnosis.  I feel fine with little or no pain and no joint damage.  I really think the key is to find a good reumatologist and find a treatment that works for you.  I also know of people who have gone into remission.  Exercise, a good diet and a positive outlook also help.  Good luck!
  • Posted

    Tony - from my understanding its our body deciding that another part of us is the enemy, and needs attacking, just like our immune system attacks the flu or a cold, or even an infection.

    How does our body know to turn off attack mode when the infection is gone, I'm not entirly sure I understand.

    I just know that our body has forgotten to turn off the attack mode and has decided that our joints are the enemy.

    I have come to the conculsion that diet does have a huge influence, and finding the correct mix of food, medicine is long term going to help us, I know it does for me, but I find it very hard to follow, or I certainly hope so.

    I too have had a bad week, regards news with my hips, nothing they are going to do, MRI tells them I have major problems with my lower back, and the problems with the hip have only made it show up earlier than it would have otherwise.

    Long term, Dr tells me too avoid back surgery as long as I can stand pain.

    Agree with him there, family friend had horror back surgery, that they couldn't undo, have not pretty memories of the cripple he became in his early 60's, still active on two walking sticks into his eighties.

    • Posted

      I just had my 4th and final spinal fusion and I have absolutely no pain in my lumbar spine. The key was finding a great surgeon. I was recently diagnosed with RA and I'm so thankful my back isn't causing me any issues at all.

      So far I'm only on Methotrexate and my Rheumatologist just called in prednisone to try to aleviate some of the pain,swelling and stiffness in my elbows wrists and hands and will be adding Enbrel soon.

    • Posted

      Hello Gail...I was just wondering why you had to have 4 spinal fusions?  I had L4L5S1 done about 5 years ago.  I have had serious issues with my back and just recently I saw a new back doctor who has said he is pretty sure I never fused..ever heard of that?  Just wondering.  Thank you
  • Posted

    Hey Tony

    I'll tell you for sure, there's a few things that suck about getting older but I prefer it to the alternative. But that's not to say that RA is the end as you know it. It's just another turn in life for me.

    But if you've read much here you see everyone has different symptoms and treatments. So much so it's a little odd. I'll bet diabetic forums don't have so much variety! They probably all yearn for pancakes and mashed potatoes. Or whatever. Sorry folks.

    So I'm 58. I did a lot of construction type work most my life and got a desk job 17 years ago. 2010 I started having terrible wrist and shoulder pain but was sure it wasn't carpal tunnel. 2011 they said it was RA. Did the usual treatment. Pred, Mtx. (Nobody's the same so it doesn't matter what drugs I took)

    My abilities to do hard work with my hands was about gone. Did it anyway and paid the price often but not always. Almost gave into acting like I was 78.

    Last year started injecting Enbrel and I'm pretty much able to do anything I want. I am 58 but I still do some really physical stuff. Most the time I don't want to but I can. I can go whitewater kayaking without too much stiffness. Install heating units in attics on the side for a few extra bucks even.

    But everyone has different triggers and pain tolerances so be patient and work thru your symptoms. Hopefully you'll find a good combination that matches your needs. It could take a while. And ya it sucks. Maybe you're really young and I sound full of crap. But I do have RA and I have very few limitations. I realize this might be short term remission so for now I guess you can called it a success story. Eventually I'll call setbacks new normals.

    Good luck

    EM

  • Posted

    Hi Tony. I have RA for almost 20 years. Unfortunately, this disease will be with you all your life. It started when I was 11 years. When you are a child, you don't understand what is going on (it's frustrating), and because of that you are not so strict with your treatment. I started with Remicade 10 years ago, and my life totally changed. I think I am a success story. I studied the undergraduate and now the postgraduate, I work as a manager in an important company, I go to the gym everyday (running and lifting weight), I go to parties (dance and everything), I love travelling (warm and cold places). After 20 years, I think that this disease helped me a lot (and keep doing it) to become a better person. It is not easy at all. It's a daily effort. Motivation is extremely important. My advise: do not think RA is you enemy. Best luck!
  • Posted

    Yes you do have it for life, but that doesn't mean you need to be in pain for life.

    It takes a while to get a handle on it and there are many, many options.

    I have been relatively pain-free for over a year.

    So take heart!

  • Posted

    medicine revolving all the time, things do improve, just a long process but from my understanding it still can flare anytime x
  • Posted

    Heres the thing.

    I have done more reading in the last 3 months than I have in my entire life on rheumatoid Arthritis.

    I havent been diagnosed officially but I have all the symptoms.

    It seems there is a lot of research going on at the moment into the gut biome.

    Hundreds of millions of dollars are going into massive projects to map the gut biome in the same way we mapped the human genome.

    It seems that people with RA, ME, FM and even parkinsons have distncly less VARIETY of flora in their gut, there is plenty of research on this google microbiome and autoimmune, So variety of gut flora comes  from life long exposure to to various bacteria, from your mum ( note that c section children have different health outcomes than natural born) The gut flora in aboriginals and kalhari bushmen is vastly different to ours ( see american gut and the human biome project)

    There are now studies that show that swapping microbiome can create different health outcomes. 

    Google C.Difficile and FMT.

    Google FMT and Parkinsons

    Google FMT and RA.

    You can manage your symptoms a lot with diet, address a leaky gut and candida, address fitness ( yes, I know its hard)

    Your gut biome might just be the key to modern medecine.

    Note what dogs do when they are sick.

    What did hippocraties say about disease.

    dont get down Tony, now is a very good time to understand the gut biome and do the best you can with probiotics and a vegetatian ( non inflamitory) diet. ( which affects the gut biome) untill such time as FMT becomes more than an experimental treatment.

    Google fecal Microbiota transplant and read up, there could well be a fix for many illnesses around the corner.

    Its the only reason I'm positive about the future because I can assure you the last flare I had was enough to make me , well, you know how it goes 

    • Posted

      I had been on an anti-inflammatory diet for 6 months prior to getting my diagnosis hoping that could eliminate my symptoms. If anything I felt much worse. If we all could eat our way out of this disease we would.
    • Posted

      I haven't read very post here, but it's a good idea to encourage dieting even though there may be generally a low success rate.... because the fact that some people do benefit partially from radical dieting means it's worth trying, and its success would to some extent depend on the degree of virulence of the RA.

      In all events, losing weight is one of the first and best things you can do without medications, because the less weight you carry around the less stress it is on the inflamed joints.

  • Posted

    Unfortunately not all treatments work for everyone, but they are worth a try, after all anything is better than what we are going through. I see my Rheumatologist next month, I'll be quizzing him on FMT for sure. The remainder sounds logical and promising.
    • Posted

      I agree!! By all means go ahead and eat healthy it certainly won't hurt. But unfortunately for me it didn't help either.
  • Posted

    I also tried a number of diets, removing dairy, gluten, wheat, meat and so on, didn't work for me either.   By that I mean - I hated it!   I can quite easily go without meat, but no gluten, wheat, dairy????   Nooooooooo!   This was for an unrelated (?) condition, Urticaria - didn't help at all!

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