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Is the worst yet to come?

Posted , 7 users are following.

hayleymac
hayleymac

Hi everyone, I had to wait 3 weeks for an appointment with my GP who was amazing when first diagnosing my RA in April.

When I arrived she wasn't there and I had to see another Dr about my back pain. When I told him I had RA his response was "says who?" so I gave him the letter from my consultant diagnosing Sero-positive RA. My question is this Dr said my inflamation markers were only slightly raised, on every blood test - Although my RF is 135 and CCP is 330 - what does this mean? I am on 20mg MTX and Hydroxychloroquine.

Does this mean the flares I have had a tiny and the worst is yet to come or do I not have RA. My Consultant has felt and seen swelling in my finger, both feet, shoulder and wrist... I am feeling really confused.

 

0 likes, 10 replies

10 Replies

  • natasa24657
    natasa24657 hayleymac

    Posted

    Hi Hayley

    Did you see a rheumatologist. Or was this your GP. My arthritis is zero negative. Are you stiff or is it painful only

  • barbara58180
    barbara58180 hayleymac

    Posted

    OMG!!!!

    I am so sick of this kind oif thing. Let them have this disease, then tell us we do't have it.

    I'm sore-negative, and have had several Rheumatologists, and other MD's tell me, "then you don't have RA" Rediculous. I had a rheumatologist tell me I didn't have it because I am not TOO deformed-and that I'm on too many medications. Well, that's why I look so good!

    Don't worry about the future, you have no control over it. Just get the best care you can, now-- and don't worry, if you had swollen , hot, red joints, and RA factor--you got RA. Some people have the labs, but no disease. That's different.

    Gdood Luck!

  • Rowbirdie
    Rowbirdie hayleymac

    Posted

    Hi

    the consultant is the expert and has diagnosed sero positive RA. There is no doubt about it and your RF and anti CCP confirm that.

    i would take the GP comment at face value. What he is saying is that you don't have high levels of inflammation. This is almost certainly because you ve had an early diagnosis and you are being treated ' aggressively' by the consultant who has prescribed 2 meds( in keeping with current best practice) so the RA is being controlled well. This is great news. The low inflammation means less risk of joint damage because the meds are working. If you start to get more pain / stiffness , contact your consultant asap as the first year after diagnosis is quite important in making sure the meds keep on top of the disease.

    From what I ve read if you are sero  positive you are at risk of a stronger form of RA- hence your consultant putting you on 2 DMARDS straight away. But that is brilliant news the inflammation markers are low.

    you ll no doubt be having a blood test every month. They will monitor inflammation markers( crp levels) in case they suddenly go up.

    It is rare to find GP s that understand about RA so go with what your consultant says and don't worry. This is all going well at the moment. Hope you are finding some ease of pain and swelling. Keep a diary of how you are ( tender or swollen joints/ any new joints affected) so you can give honest feedback about whether these meds are working at your next consultant appt. there is more they can try if need be.

    i was diagnosed 2 years ago and after a year of them trying to find what worked for me as everyone is slightly different I now have low disease activity, bordering on remission, and have resumed many activities I was unable to do for a time. A ll the best in your journey.

     

  • Onslow315
    Onslow315 hayleymac

    Posted

    Hi,

    I am in similar situation as you. Very confused and very frightened about what future holds. I too have elevated CCP (153) and RF (15). My inflammation markers are normal. I only have issue with index finger. I got RA diagnosis and was put on Hydroxychloroquine. Generally I feel fine. Is this the calm before the storm?? I cannot get straight answer.

    The doctor who questioned your diagnosis, did he say why?

    It concerns me that some of these doctors rely too much on the blood work to make diagnosis. But what if they are right and we need to act NOW to prevent problems later? It is certainly a puzzle.

    Please let me know what's going on.

    Regards,

    Amy

    • Emily1234
      Emily1234 Onslow315

      Posted

      Hi Amy, I read your post and you sound like me...I feel generally well too i fear the worst is yet to come...how long have you had RA Are you stiff or tired ....do you have swelling...how do you feel in the morning and during the night
    • Onslow315
      Onslow315 Emily1234

      Posted

      Hi,

      The only problem I have is finger. No morning stiffness, fatigue, etc. When my finger is acting up, it is swollen 24/7. I had it injected last week and that provides immediate relief.

      I was diagnosed Feb 2014 but first finger issue was in 2010.

      What were the results of your blood work?

      What have doctors told you?

      Regards,

      Amy

    • Emily1234
      Emily1234 Onslow315

      Posted

      Hi thanks for your reply. I had two swollen knees which have now  gone by themselves but I do have stiff fingers still. My blood was normal except my CCP at23, just slightly positive. I was given predisolone but I have nt taken it. Are you on anything?
    • Onslow315
      Onslow315 Emily1234

      Posted

      I am taking Plaquenil. Not sure it does anything. No way to know. They say that CCP level is really irrelevant. The fact it exists is what matters. So, no need to retest it. Supposedly, the level is no indication of disease activity.....very confusing.

      The injections help me immediately and so far have lasted for a long time. 12 months +.

    • Onslow315
      Onslow315 Emily1234

      Posted

      No. It's just pills. I've never heard of injecting it. It is methotrexate that comes both ways.

      No side effects. Have to get very extensive eye exams annually because it can effect vision.

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