I thought joint pain was bad. I thought flares were bad. I totally forgot how crippling sinus infections were. My head feels like exploding and I cannot tilt my head backwards a quarter of an inch without my head pounding out a tune.
Throughout junior high and high school I suffered from intense sinusitis (made worse by the sweltering humidity of the East Coast climate). I was on steroids and antibiotics regularly, as often as once a month! I developed allergies to cats and dogs (ironic, right?) and wore a mask to work. I missed days from school.
As the years passed, mainly junior and senior year of high school, my sinuses stopped draining on their own and there was constant fluid and blood build up. Steam no longer helped and I took higher doses of steroids to counter inflammation.
I found relief from my sinus problems when I moved to Colorado, for school. Any time I got a cold it turned into a sinus infection, but they were few and far between. However, when I returned to DC, my ENT doctor said it was time for surgery.
The surgery enlarged the sinus canals and ballooned the cavities open. The recovery sucked but I felt awesome! It was summer and I could breathe! I did not live life in a foggy haze! My nose stopped running continuously. The surgery worked.
Then I was diagnosed with RA and started Orencia.
Orencia, in particular, suppresses the part of the immune system that fights sinus infections. Whoops. It is rather unfortunate this is the only biological medicine that works for me.
I have to stop the methotrexate injections while I am on antibiotics because my immune system has to work at it’s “best” but hopefully in a couple of days I should feel better.
Oh, Orencia. It is amazing how wonderfully these medications work, but how awful the side-effects? are.
Hi, my name is Monica and I have RA.
Sorry to hear that you’re ill! Hope you get to feeling better soon.
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Thank you! I really appreciate that!
The antibiotics are starting to do their thing 🙂
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That is insane!! That’s was my reaction as I read, “insane”. How is that one medicine that helps with one thing, makes something else worse? I’m not even going through it, and I’m screaming, “That is just NOT FAIR!!” … Ok, I suppose I have been spending too much time with children lately!! 🙂
Hope you feel better!!
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I know, right?? I have been pretty lucky with the Orencia. I do not catch as many colds as I used to on the Humira or Enbrel!! 🙂
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Are you still on orencia? Have you had to have any more surgeries? Orencia has been the only biologic that has worked for me, but I have had a sinus infection since September. I am headed for a CT and to an ENT.
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I am…unfortunately for me as well the Orencia is the only biologic that worked for me…I was on Enbrel and Humira and I never had sinus issues with them. The surgeries worked wonders and I literally never had another sinus infection until I started Orencia three years after. Unfortunately, the SQ injections were not doing enough but when we switched to the IV infusion, it was so much immunosuppresant my sinus problems came back really strong. I am back on the SQ for now, with the occasional infection.
My doctor told me the biologics all suppresses the immune system at different points and apparently, the Orencia hits the part that also fights sinus infections! Kind of a bummer actually. But, I guess, it’s the trade off 😦
Good luck! Are you considering surgery?
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