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mild RA? Who decided on that title?

  • By Kellie

    So I recently found out that RA has stages. I am stage 1, no joint changes. But I have to say that whomever decided stages 1 & 2 are “mild RA” must not have RA. I even saw it in the RA in America here on this site. There is nothing mild about what I have. I have been in a flare for 6 years. I had 6 months not in a flare right after I started Enbrel, which no longer works. When you have pain and inflammation from head to toe in almost all your joints, mild does not describe it.

    Sorry! Rant over!

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  • By Mariah Z. Leach Moderator

    I totally understand what you mean! Yes, I suppose it always could be worse but it does feel a little bit discouraging to be in so much pain/discomfort and have someone call it “mild”!

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  • By StillFlaring

    I had the same reaction when my doctor told me I am at mid range between stages 2-3. I cried. Could not believe the pain and illness I have been feeling is “early stages”. I asked if it is this bad now at “moderate”, how bad is this going to get?? Apparently I have been in a “flare” since at least Thankssgiving when I contracted a virulent form of bronchitis. I know now, from reading up on symptoms and reflecting on my health issues, that I have been dealing with this for several years, undiagnosed.

    Just diagnosed in March, with RA factor of 413 – at least such a high # got the doctor’s attention and he made room for me on his schedule right away-they were booking new patients into June at that time! 150 miles to the nearest RA doctor covered by my ins. The drive is horrible. After the first visit with him, MUCH blood work and xrays, during the 2nd visit, he told me the numbers indicate my RA is a “highly aggressive form” (on scale of 1-10, I am at 8.5), with sjogren’s syndrome and fibromyalgia, just to top things off.
    I am 2 weeks into more prednisone (Thank God for prednisone!!!), omega3’s, and now folic acid and methotrexate (2.5 x 5 pills, once a week) if I do well on it, he says we will increase the dosage in a week or two. So far, gut busting cramps and diahrea within a day or two after taking it are the main side effects, managing that with immodium – just glad a friend warned me before it hit!!!

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  • By GingerS

    After reading the stages of RA. I came to the conclusion that stages of RA are based on the amount of bone damage being done. Rather than on the pain one is having. Your story is very much like mine. My Ra factor was 365. Pain from head to foot. I was losing my ability to walk. It hit my right hand and right leg first. Since then spread to the whole body. Now I am on 13 medications. Still having muscle cramps, pain in my right hand. But I am learning to live with what I have and can do. Good luck with your Dr. I have been blessed with a good rheumatologist.

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  • By Mariah Z. Leach Moderator

    Hi GingerS~

    It seems a little crazy that there can be so many different variations of the same disease, doesn’t it? I’m sorry to hear that you have been struggling but I am glad to hear that you have a good rheumatologist. I hope things improve for you soon!

    ~Mariah~ (Site Moderator)

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  • By mp44sturm

    I took methotrexate in the past. I got bad nausea on the methotrexate pills so my rheumatologist changed me to injectable methotrexate. That change to injected methotrexate was so much better – no more nausea.

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  • By Mariah Z. Leach Moderator

    Hi Chinesebarbie~

    I have heard a lot of people report that they get fewer side effects from injectable methotrexate! My rheumatologist also has me take a folic acid supplement to help with the nausea, so that is another option you can ask your doctor about!

    Hope you are well!

    ~Mariah~ (Site Moderator)

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