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Dr. says I have RA . . . I am not so sure

Posted , 11 users are following.

tcphd
tcphd

I was told four days ago that I have Rheumatoid Arthritis. I am choosing to get a second opinion because I don't have all of the symptoms that I read about and I am not comfortable starting DMARDS or steroids or anything until I am sure. I am seronegative, but have other CRP and ESR blood tests that are concerning to my doctor. I don't have morning stiffness that is unbearable and I am not fatigued all the time. I don't have "flu like" symptoms or a low grade fever. My VectraDA was moderate, but that is not supposed to be a diagnostic test. Although, I have no idea why all of those numbers would show up that way if it isn't RA. My doc said my RA is in very early stages and I am very lucky because my x-rays and ultrasounds don't show any damage yet, but they do show the beginning of "the red angry stuff" (he pointed to one of the pictures of RA in his office as he said that). According to one of the reports he sent home with me, I have "markedly decreased radoiocarpal joint space and soft tissue swelling" and mild - moderate synovial hypertrophy in my hand and wrist (he didn't ultrasound other areas). When I have flare ups, I take a lot of Advil to deal with it and wait for it to go away (which at the longest has taken two and a half weeks). It isn't pleasant, but I go to work, use heat and ice, and I continue to function. The flare ups have been more present since July of 2016, but there are days and even weeks at a time that I am totally fine!

I get that the word "denial" applies here in obvious ways, but I do not want to start taking massive amounts of medication that could actually make me feel worse and have a possibility of serious side effects if I am not 100% sure that RA is what I am dealing with. And yes I realize that 100% surety is not always possible with RA. I have also read START TREATMENT EARLY in bold letters on many websites and in many pamphlets because it can prevent damage and increase quality of life, which is a HUGE deal if I am actually dealing with RA.

So, my question is this: Is it possible that my rheumatologist is wrong? (oh, by the way, he did tell me he ruled out lupus, showgrens (sp?), gout, and other issues). He has 40 years of clinical experience and told me that he felt confident in his assessment and that I should be relieved that we caught it so early. He told me he didn't feel any more testing was necessary and told me to feel free to get a second opinion when I was clearly unsure about his assessment. He said given everything he has reviewed, I could go 6 months to a year before I have any damage that occurs (I don't know how he knows that?), so I have time to research and think about what I want to do. 

I am a very analytical person and I have been reading and researching almost non stop since my "Diagnosis Day". I understand that everyone's situation is different, but I am looking for opinions from a community that has "been there, done that". Thank you for reading my post.

 

0 likes, 24 replies

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  • Gloria814
    Gloria814 tcphd

    Posted

      It does take awhile to come to terms with the diagnosis and acceptance.   You could get a 2nd opinion / keep a diary of symptoms on a day to day basis and see how you are progressing   My symptoms worsened over time but it was slow.  However we are all different.  Seems like you have read a great deal about the disease and the medications and perhaps now is the time to act re. treatment 

      Yes,  the side effects of many of the drugs are scary to read about but the disease itself and progresson of symptoms can be much worse.   

       I think you should trust your doctor since he has had many yrs of experience but a 2nd opinion could help confirm the diagnosis

        Best of luck to you!

  • timothy11402
    timothy11402 tcphd

    Posted

    Your beginning sounds like mine. I had pain in my feet and hands at first and was also sero negative. We started on just plaquinil and mobic. Then things got worse, pain over my whole body and the "malaise" with flu-like symptoms. But starting early avoided joint damage. After just a few years, he started me on MTX and spent more years fine-tuning as we observed my patterns. So it is not as if you go into your rheumatologist, get a full description of your illness, and take a couple of prescriptions and be done. Your doc sounds pretty savvy, even to the point of you getting a second opinion. He can become your ally in this.

    good luck to you. 

  • timothy11402
    timothy11402 tcphd

    Posted

    me again.....

    You did not mention your age, but I started on this RA thing at the age of 55 (am 70 now) and am in pretty good shape. I talk frankly with my rheumatologist (he is great) about my meds and the fact that I have been proactively reducing my MTX dose. I started on 12 tablets once a week and am now taking 3 tablets per week. I credit this to taking natural antinflammatories such as turmeric (google the research on turmeric) and improving my diet to include colorful veggies and fruits. Am trying to really limit my sugar intake because that sets off inflammation and so pain. Read up on this disease. Really talk to your doc and do NOT hesitate to mention other difficulties you are experiencing. For example, a few months ago I had severely chapped lips and little pimples around them. I asked him if this is something he needed to know about and he immediately was alert and prescribed folic acid as my symptoms indicated low levels of the acid due to my MTX intake. My symptoms promptly cleared up and I was no longer consuming chap sticks like they were candy. Write things down that you want to ask your doc. And above all, try to keep positive and have a sense of humor. Learn to really like your rheumatologist. He/she will help you immeasureably.

    Best wishes.

    • tcphd
      tcphd timothy11402

      Posted

      Thank you for the positive suggestions! I really appreciate it. I am 43 and tyring to take it all in at this point. Your suggestions are well recieved and I will be talking to my doctor again soon!
  • Mollyjr
    Mollyjr tcphd

    Posted

    Oh my. You could be me!!! My blood work showed an RF of 240 in May 2015. Originally I went to doc cuz I had a hip problem. An X-ray showed osteoarthritis and I had a hip replacement. My hands were stiff upon awakening. Recently I had a bone density test that showed a calcium and vitamin D deficiency which have been dealt with and a month in Florida in January have made my hand prob disappear. It is now March!!  My rheumatologist recommended hydro chloroquine which I refused upon reading about the side effects. Scary!!  
    • timothy11402
      timothy11402 Mollyjr

      Posted

      I have been on hydroxychloroquine for 15 years and know the potential side effects. I have experienced none of the listed side effects. The only thing that has to be done is an annual eye exam to ensure no changes occur in the eyes. If there are changes, discontinuing hydroxychloroquine will reverse its effects. In fact, my opthomologist told me that in all the years of practice he has soon zero cases of this effect. It is exceedingly rare. 

       

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