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Newly diagnosed

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kristi20078
kristi20078

I am newly diagnosed with ra due to a ccp blood test number >30. I have no pain in my hands or feet. I have some pain in my upper arms and hips due to synovial inflamation. Have others been diagnosed with ra with this type of presentation? I'm completely overwhelmed by all the information and terms. It would seem more likely that I have pmr? Help

0 likes, 16 replies

16 Replies

  • EileenH
    EileenH kristi20078

    Posted

    Since you are throwing out the idea of PMR - may I ask a question or two?  How old are you? And what makes you think PMR is more likely than early RA?

    A positive ccp (which you have) is usually taken as indicative of either early RA or that you are likely to develop RA in the future. It is very unusual for someone with PMR to show a raised ccp. 

    But I can't express an opinion that is more than that on the basis of what you have said so far.

    • kristi20078
      kristi20078 EileenH

      Posted

      thank you, good to know. From everything I've read the presentation seemed off a bit.

    • EileenH
      EileenH kristi20078

      Posted

      One of the things they say is that if a raised ccp is found it is a very strong indicator that the patient will develop RA at some point. 

      But you didn't answer my questions...

    • kristi20078
      kristi20078 EileenH

      Posted

      Oh I'm sorry, I'm 56 and from everything I've read PMR strikes shoulders and hips. Early RA strikes hands and feet. I'm so new to this that may not be true at all-trying to gather as much information as I can.

    • EileenH
      EileenH kristi20078

      Posted

      You are the right sort of age group - but LORA, late onset RA, often doesn't manifest quite the same as ordinary RA and it isn't unusual for PMR and LORA diagnoses to get confused, with someone told first it is PMR and later have the diagnosis revised to LORA. some people with hand and foot problems may be told it can't be PMR - but hands and feet sometimes join in it PMR. It is all very confusing and even the experts get it wrong.

      But as Gloria has said - you need a good rheumatologist who will do the requisite investigations. Good luck.

    • timothy11402
      timothy11402 kristi20078

      Posted

      Hi, Kristi:  Sorry for your plight. I contracted RA at the age of 55 (am 70 now) and it was hands and feet at first. Over the years, different parts of my body would hurt along with the fatigue. It took my rheumatologist close to ten years to finally see where my pattern of pain was going and he refined his diagnosis to be palindromic RA. That means, for me, that I never know where the pain will be from week to week. And it is not necessarily symmetric...hence the palindromic RA. The point is that your rheumatologist needs time to see what is going on with you and adjust treatment accordingly. 

      I hope you feel better.

    • kristi20078
      kristi20078 timothy11402

      Posted

      How have you managed over the past 15 years? Have you had much pain? Whata medication have you been on? Sorry-I'm just full of questions.

  • Gloria814
    Gloria814 kristi20078

    Posted

    Hi Kristi

       It IS overwhelming --all the information and terms that are new.   I don't know about the PMR question but I do know I was overwhelmed at the start.   I got books to read on RA and went on the internet, found this site which has been wonderful among other sites and info from the doctor

      Maybe my presentation was not typical either.  Main complaint was overwhelming fatigue,  some pain in one finger which could be relieved by a tylenol or 2 daily .  All RA blood tests negative but RA specialist decided to do hand xrays and MRI of hands which showed erosions---hence RA diagnosis.  Guess we all are different

       I also have no swelling other than minimal in that one finger but the foot/ ankle pain has really increased but also no swelling there

       Hopefully you find a good rheumatology MD and you can feel free to ask questions and be treated properly

    • kristi20078
      kristi20078 Gloria814

      Posted

      THank you, I'm desperate for informationconfused Have you been put on any medication? It seems some people do and others do not. I can live with the pain I have now just don't want things to progress to the point where I cannot. Again many thanks-promise I won't hound you with more questions. I've read everything from horror stories to nothing that bad.

    • Gloria814
      Gloria814 kristi20078

      Posted

      Don't feel like you are hounding anyone with questions.   We are all here  to help each other and get support and knowledge about our diagnosis

      I am on methotrexate but only a low dose as I got sick on dose at 10mg

      Then went on Humira injections but they are on hold do to side effects.  I have an upcoming appt with RA doc and GI doc as I have inflammatory bowel disease too   I was only diagnosed last spring so I am no expert on anything.   I try to stay positive and just take one day at a time for now

       

    • Mollyjr
      Mollyjr kristi20078

      Posted

      I am afraid to take meds. My pain goes from one hand to the other swelled in the am. Manageable. However I have just come from a month in Florida and haven't been bothered since. I think the sun helps. Also seems like when I add spinach to my smoothie I'm not bothered by pain. Could be my imagination but I have felt normal since my month in the sun. Keeping my fingers crossed. I've heard vitamin D helps. 

    • Guest
      Guest Mollyjr

      Posted

      You haven't hurt bad enought. When you do, it will be an easy choice smile

  • Emily1234
    Emily1234 kristi20078

    Posted

    HI Kristi i'm new to this RA too! Has your reumy suggested any meds to you? Do you know how high your CCp was an exact number i mean?Did it show in your ESR or CRP too? Hope you are doing ok X 

    • kristi20078
      kristi20078 Emily1234

      Posted

      Hi Emily,

      I meet with the Dr. again this Friday she is planning on putting me on 15mgs of prednisone-going down by 5mg every two weeks. She is also planning on putting me on 200mgs of Plaquenil. I'm not sure if that will be once or twice a day-but will get back to you. She has asked me to have a base line eye test before I start the drugs. I've been MRIed from my neck to my knees and xrayed as well. I also plan on getting a baseline bone density test.

      Tests-- I'm going to be close here as I do not  have the papers in front of me. CRP 15, CCP 50, no RA, no ESR. How are you doing? Symptoms?  What are their plans for you? What were your numbers? Sorry to ask so many questions-these are scary timescry

    • Emily1234
      Emily1234 kristi20078

      Posted

      I no I am scared too I had very bad swelling in my knee but that has subsided I now have generalised aches and flu like symptoms and tiredness my ccp was low too and I had no crp or esr markers I see my reaumatologist again early march then going to start meds let me no how you get in with your meds ow do I feel at present?
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