Confused - doctor wants me to stop immunosuppressive therapy

Posted , 6 users are following.

Last summer I was diagnosed with inflammatory arthritis after years of unexplained symptoms such as pain, muscle weakness, dry eyes and fatigue. I had been to many doctors and had dozens of tests, but I found no answers until a few knuckles and fingers on my left hand started to visibly swell. Two months later, with no sign of the swelling abating, I returned to a rheumatologist I had been seeing and he ordered an ultrasound. The ultrasound showed chronic, inflammatory damage everywhere they checked (fingers, wrist, elbow, toes and ankle). I had thickenings, calcium deposits, active swelling of the synovial membrane of five joints, and what the doctor described as "the joint degeneration of a much older person" (I'm in my 20's). When asked to point out my painful areas in each joint the doctor said I was "spot on" and explained what the ultrasound showed where I pointed. I was diagnosed with inflammatory arthritis, likely RA, but since my presentation had been atypical the rheumatologist didn't yet want to make the distinction between spondyloarthropathies and rheumatoid arthritis. I was started on methotrexate the next day. It felt great to finally have a name for my mystery illness and the hope of improving with treatment. 

After five months on MTX I still had pain, fatigue and occasional flares, so my rheumatologist added Humira and arranged to see me again after three months on both treatments. I haven't had a flare since starting Humira and I've noticed I'm able to work more hours, but I still had some pain and fatigue. I wasn't feeling as good on treatment as I hoped I would. At my rheumatologist appointment, the doctor said that since I was still having symptoms on both medications there was probably no active inflammation to treat. He ordered an MRI with contrast of just my left hand. He called me the following day to report that the MRI showed no active inflammation in my hand and said that the ultrasound done last summer must have been wrong since the MRI was a better method. He then took away my diagnosis, my medications and cancelled my followup appointment. Any question I asked was met with a response of "the MRI showed no inflammation." 

So here I am, back to being undiagnosed but with more confusion than ever. It was my impression that no active inflammation would mean the medications were working, not that the diagnosis would be thrown out. I was hoping some community members would share their answers to the following questions to help me to understand. 

Has anyone ever experienced having their diagnosis and/or medications taken away after the inflammation improved? For the people still diagnosed and on medication, do you feel 100% on your meds, back to your normal self? If so, how long did it take to feel good on the medications? Has anyone been told that their inflammation changed to just 'swelling'?

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  • Posted

    Hi, sorry to hear about all your troubles and that you have no current diagnosis it can be so frustrating and also degrading to the point you feel they have given up and no answers. 

    In my experience I started with joint pain fatigue generally feeling unwell at the age of 23. saw rheumatologist who after ultrascan which showed active inflammation and erosion diagnoses with a form of arthritis same as you unclear whether it was spondylitis or RA I started methotrexate to ending up having awful side affects same as leflumimide. I was then given biological therapy which worked and felt better but I ended up having 8 infections in the course of 8 weeks. Therefore taken off and told at the moment my immune system can’t hack it

    Disappointed with the level of support from the rheumatologist in regards to treatment I went to a more specialised hospital to seek further advise as I know you can have half doses of enbrel etc which wasn’t offered at my local hosp. 

    The new rheum decided to re do the ultra scan and informed the scans were normal with no active inflammation ( I was also on prednisolne) at this time which dampens your inflammatory markers. 4 years later I’m still undiagnosed unable to work in pain and ill most of the time! I have given up now and just accepted this is it. I was told I have fibromyalgia. Too me this seems easy way out for them. 

    I hope you get some  answers soon. 

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    • Posted

      Thank you for your reply.  I'm sorry it ended up so horribly for you, it's awful suffer but get no help.  Did you feel worse or did your condition progress after stopping the medications? 

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    • Posted

      I think you should both go to a different rheumatologist!  I am on Humira and have been for 13 years, I was on prednisone, methotrexate and Arava along with the Humira at first.  I am pretty much pain free most of the time but have a little pain now and then when I have over done it and I think fatigue is part of the disease but I am 69 years old!  My doctor says the medicine is working if I have no inflammation and very little pain.  I would advise you to get another opinion!
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  • Posted

    Yes not unusual, I had a really good response to my first bout with my sero negative RA, and or psoriasis arthiritis, and it completely settled, no meds needed. 

    ?I when about a year before it re-occurred, then it hit harder than ever, never had a break since, except for a small break when I changed diet complelty, NO WHEAT, through it was worth a try, again seemed to work for a while, then back to normal again, or whats normal for me.

    ?I have had a double hip replacement, joints in a mess is the way the surgeon described it, and now I have been told knees are a mess as well, not looking forward to knee surgery, but may be the only answer for my pain, which is NOT HELPING my arthritis, vicious circle I'm afraid.

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  • Posted

    Hi Solana, omg. What a nightmare. I was diagnosed a few months ago after complaint of joint pain and dry eyes. Then I started with the swelling, muscle pain and excruciating joint pain. 8 tabs of mtx with no improvement. Then was given Humira bi monthly injections and my flare finally subsided. I am so sorry you have such a jerk for a rheumatogist. Please find another doctor.
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