New, to site & RA

Hi, I've been searching sites & trying to read up on RA as much as I can to know what I'm in for. I found out this last October that the symptoms I've complained to my general Doctor for a couple of years is RA. I was tested for it once but it came back negative. Even when I finally asked her to refer me to a rheumatologist she told me she doubted I had it. An MRI showed I had it in the joints of my toes. Since then it seems to have spread to other joint quite rapidly. I'm on methotrexate & leflunomide & take prednisone a lot with flares. I haven't found a lot of relief. Some but not what I expected. I'm so tired of hurting. I wake up every morning thinking maybe this will be the day I won't have pain somewhere. It hasn't happened yet. I can't imagine what some of you go through having it as long as you've had. I'm tired of it & its only been about 7 months. Thanks for listening to me rant. Blessings to you all.

4 Replies

  • Hi tselph, I was diagnosed with RA over 8 years ago. My general doctor was rather quick to refer me to a rheumatologist. At times it seems he's too quick to refer me to a specialist, like if I say I'm having a problem with my toe he recommends me to a podiatrist without even looking at it. But this time it was good that he did. Most of my pain had been in my fingers and wrists initially. My RA doc gave me blood tests, x-rays, and did a thorough evaluation. From that I was diagnosed with RA, even though my blood test was negative. So for the last 8 years I've been managing fairly well on mtx, with prednisone added whenever a flare occurred. Then early this year I had a really bad flare that wouldn't stop. It had now spread to my toes and feet. He increased my dosage of mtx, as well as taking prednisone daily. It seemed to be helping... but then came the side effects. My system just could not handle the mtx at the higher dose. We reduced the dosage but the side effects remained and the pain came back. Just started on Enbrel about 3 weeks ago. No improvement on that one yet, but it can take up to 3 months or longer to work. I think that it is very difficult for the doctors to come up with the right combination of medicines to ease your pain and not cause you severe side effects. I had really been lucky that the mtx. as that was the first one they tried and it worked for 8 years. Now, I'm hoping Enbrel will be the one for me.

    I too am hoping to have a night/morning without pain soon. Unfortunately the meds rarely work as quickly as we hope they will. Keep trying, never give up hope, we can beat this! Feel free to complain and/or rant here, as we understand. I don't think that people who have never had a type of auto-immune disease like this will ever understand.

    I am fairly new to the community myself, and I am sorry no one has responded sooner. I hope that you are already starting to feel some improvement.

    Wishing you well. Take care, Karen (Amber is my kitty cat).

  • I understand your frustration. When doctors don't know what to do they just refer you rather than trying to figure it out themselves. I'd just as soon refer me to a specialist, at least they have the knowledge on how to deal with something. I started on Humira about a month & half ago. The doctor said it could take 4 months before I might see any improvement. In the meantime I continue to hurt. Hug that kitty. Pets are good therapy.

  • I'm still waiting for my new med to kick in. I started Humira about 2 months ago & I'm still in a lot of pain all over. I had to leave work early today because my hips were hurting so bad it hurt to walk. I should have called my doctor but I'm afraid he'll put me on prednisone again. I don't like the side effects of it.

  • Hi tselph, I am sorry to hear that you are still in so much pain. I am still waiting for my Enbrel to start working as well. I am taking prednisone daily though I am not a big fan of that medication either. Trying to get off of it as soon as the Enbrel starts working. I've recently asked my doctor for some medicine for my continued pain and he did prescribe some for me. It is definitely reducing the intensity of pain, but not eliminating it. I have developed an ear infection, so I need to skip a dose of Enbrel and take antibiotics. Also had to have a tooth extraction a couple of days ago... more fun.

    I know it can be difficult, but we need to try to stay positive. Better days are coming soon! It does help to have Amber, though she is not quite as cuddly as I'd like her to be. Do you have any pets?

    Feel free to message me directly.

    Take care, Karen

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