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Living with Rheumatoid Autoimmune Disease (RAD)

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  FORUM:   General Team Discussion Forum
TOPIC:   What to do!? 


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ANGEL1066
ANGEL1066's Photo SparkPoints: (67,467)
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5/18/12 11:42 P

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I use the Neti pot, too, with distilled water, it really helps when allergies flare. Also Flonase, which works differently than the decongestants I used to live on. It really helps! I'm on Enbrel and have had to go off for an extended period twice, both times because of pneumonia. I hated missing it, but you have to if fighting a contagion. Are you sure your sinus issues are from an infection? If it is allergies causing this, Enbrel should actually help. Have you been thoroughly tested? Also 20mg feels wonderful - except for the muscle weakness - but that is an awful lot of pred. It will take a long while to wean yourself off of it. Your appetite must be raging! I'm old enough to have had this "Burst" treatment but most docs around here have abandoned it long ago. I take 2mg of pred twice a day, and am told I always will. I would love to lower that, but so far cannot. Be sure to follow the gradual withdrawal schedule your doc should recommend, or a gigantic flare will result. God Bless!

"Mountains DO move...One stone at a time." ~Rick Beneteau
Do not let what you cannot do interfere with what you can do. - John Wooden, Hall of Fame college basketball coach
With exercise, doing some is always better than doing none. - Spark article
MAKE THE BEST FOOD CHOICES YOU CAN TODAY - and then, try it again tomorrow!- Dr. John La Puma, M.D.


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ITSERTIME
Posts: 456
5/13/12 3:08 P

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thanks u guys are awesome cause of all of this i tend to isolate.


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CATHOLICCORGI
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5/13/12 12:08 P

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Wow, Erica! Sorry the RAD has raised it's ugly self into a flare... I get that "brittle bone" feeling, too. Or I feel like my feet are gigantic "pillows".
Does irrigating your sinuses help at all? A Neti Pot does help me some. The pollen where I live is still out the roof, and it makes it hard to keep sinus' clear.
Sure hope you can get back to your usual meds soon. It's hard to keep a SPARK glowing when you hurt, but if you can keep to the basics of SPARKing, it can help in the long run. Keep it simple and go easy on yourself! This will pass eventually...
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You can vent with us here on the team. Getting the emotions out helps. emoticon

Step into the unknown with confidence! Trust that in the darkness of that first step there will either be something solid to stand on, or you will be taught how to fly!


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TMANNY
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5/13/12 2:32 A

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I am so sorry that you are in a nasty flare. I have never had to be off my meds for that long so I am not sure what would help you best in this situation. Do you have prednisone for daily use? If so I would be using that and advil to help with the inflammation. I hope you can get your enbrel again soon


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ITSERTIME
Posts: 456
5/12/12 7:23 P

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Man oh man I have been off enbrel a few months due to sinus stuff, but for a while it worked great, reallly no pain or stiffness! So a few days ago I started flaring real bad could hardly walk my bones felt as if they would break just gross so I went to the rheumy and got a 20 mg shot of pred, plus an Z-pac for another sinus issue and then hopefully go back on the enbrel instead of switching meds. And on top of it Im dealing with stressful uggghhh life situtions, which never helps. Any input would be appreciated, thanks, Erica


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