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what if it's not RA what then

Pain started in my hands then swelling in fingers. Lasted for several weeks. Ankle and lower leg swelling over night - G.P commenced prednisolone 50 mg. Pain and swelling reduced however pain has continued in different areas. Rheumatologist started titrating prednisolone and now I'm not on any.All my bloods came back ok besides B12 defficiency for which I had injections for months. G.P thinks it's seronegative RA. I have IBS and chronic pelvic nerve pain and and wear a Norspan patch for that as well as take Tramal PRN.
Pain is in my hands mainly fingers - end joints, balls of feet and toe joints. The worst is the rib and sternum pain. I was told years ago i had costochondritis but I don't think so. I am tired all the time doesn't matter how much sleep I have. Sometimes I have to pull over the car to sleep for 20 mins.I am stiff and sore in the mornings. I used to be very fit and active now I feel drained and old.
The Rheumatologist wants me to have an MRI and blood tests when the swelling returns in my hands. Trouble is the appt has to be booked weeks in advance and the swelling may not be there on that day. As much as I would prefer not to have the RA diagnosis at least i'd know what im dealing with. I see the Rheumatologist in May if she doesn't agree with the diagnosis of my G.P i'm back to square one. I just want answers so I can be on an appropriate treatment program. I'm so tired of putting on a brave face at work and with my Family when I feel so awful. Any suggestions would be appreciated - thanks in advance for letting me vent, gentle hugs to all

  1. Update - Today I saw the rheumy for the 2nd time and she agrees with the diagnosis of sero negative RA that my G.P thought. She has prescribed Methotrexate 10mg then up to 20mg once a week. I am also taking folate on an alternate day. I will be reducing my prednisolone over this time. This med has worked really well for me however last time I reduced it I was quite unwell , mainly with migraines. i am hoping to not have too many side effects from the reduction of pred and introduction of methotrexate.
    It is was good to have my concerns validated today. Whilst I do not want another medical condition to contend with however was pleased to not be turned away with no answers.

    1. Hi Greenjam. Sorry it is RA. And you get to experience the dreaded prednisone crash. That is NO fun even when you go through a nice long taper.
      I've been on methotrexate (MTX) for about 5 years and the med helped me. I ended up on 25mg, but on the injectable version because my tummy couldn't handle it orally. If you end up nauseated, call your doctor because they can switch you over. The day after I take it I plan to do nothing but recover, so you may want to find a way to build that in to your schedule, at least at first until you see what it does to you.
      Costochondritis.... pls tell me more. I am going through something similar, except I failed a pulmonary functions test. My DLCO is low. Did they do a bunch of testing and rule out BOOP, Interstitial Lung Disease, etc? How did the diagnose costochondritis? High definition CT ruling all the other stuff out? I'm about to go through all of that next month.
      Good luck with your treatment.

      1. Hi greenjam! While I am sorry you received a diagnosis of RA, I know that sometimes there is some peace of mind that comes with having a definitive answer as to what is going on with our bodies. I hope you are able to avoid nasty side effects as you taper down on the prednisone. Please don't hesitate to reach out if you have any questions about methotrexate or any other RA related issues. Thank you for the update! Best, Erin, Team Member.

        1. Thankyou ktinflorida and Erin rush for your'e replies. It's great to connect with people who get it. It's not that I want RA - my Great Grand Mother died of this dreadful disease many years ago - however the not knowing was worse. I can now arm myself with knowledge and surround myself with support to move forward with my new "normal".
          ktinflorida regarding the costo I had xrays but that's all. My G.P advised me it was costo. I did see a cardiologist for low blood pressure and tachycardia and he agreed with the diagnosis. It has been worse on and off over the last 6 months. I have been advised that this is a short term condition and should have resolved after a few weeks. However there are a lot of forums where people have had it for 30 years !. the prednisolone has helped with the costo pain so I'm hoping the methotrexate will too as I titrate off pred. Good Luck with your'e testing - your's sounds so much more complicated than my diagnosis.

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