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So tired of this now


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Old 11-19-2007, 11:27 AM   #1
thesedays
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So tired of this now

I'm so tired of this now and still don't have a "real" diagnosis. Been seeing my Rhem. for over a year now and still no better than before.

All blood work is normal / negative so the rheum is calling it "clinical RA" since I have all the symptoms but not the positive numbers in blood work. Sever swelling / stiffness in my fingers / hands and wrists. Which then also comes in my knees / ankels and sometimes in my hips.

I take 400 mg plaquenil a day and can NOT get off the prednisone. Every time I try to come off the prednisone my hands swell within 1 - 3 days and I get these "fluid" looking type welts / swollen bumps on the top of my hands down where the hand meets the "wrist" area.

I'm tired of the pain. I'm tired of not feeling good and I'm just sick of the "flare" cycle.

I was off prednisone once for 6 weeks before the flare came back with a vengence and now I can't get past 2.5 mg. Once I completely stop the prednisone I'm back in a major flare within a couple of days.

I took my last (I was hoping) 2.5 mg prednisone on Friday and today everything on me is painful, stiff and swollen.

I can't take it anymore and feel as if they will never really know what is wrong with me or how to treat it without prednisone [email protected]!!

 
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Old 11-19-2007, 05:19 PM   #2
Shanibelle
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Re: So tired of this now

I have had RA for over 12 years now and have been on just about every medication and still cannot get off prednisone. I am not on a high dose, only 5mg.

As you know, plaquenil is very basic, I did not respond with plaquenil either and I have positive blood work and physical symptoms. If your rheumie cannot move you past plaquenil you hopefully can pursue other rheumies. You have MTX, biologics, or if the rheumie isn't comfortable with truly giving you a RA diagnosis he/she needs to figure out what IS wrong.

Being on medication for RA does not mean you get to drop prednisone. If you do have RA you may never stop prednisone. There are people who are on MUCH MUCH more than you or I. Very few get away without it.

I am sorry you have to deal with this. I am lucky to have come to terms and acceptance of this disease.

 
Old 11-20-2007, 05:43 AM   #3
thesedays
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Re: So tired of this now

Shanibelle - are you having any issues with only 5mg of prednisone? Weight gain, moon face or the "buffalo hump"? I have not had any issues such as those but other issues I"ve noticed is that my skin seems very thin and looks much older than it did before the prednisone.

I can get down to 2.5 mg and the swelling stays away but anything less than that and I have a major flare.

 
Old 11-20-2007, 04:43 PM   #4
Shanibelle
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Re: So tired of this now

I have no issues related to prednisone. I am heavier than I should but that is due to 12 years of medication not working and my bones taking a beating due to it. Keep in mind while prednisone does cause skin issues, when you have RA (or any inflammatory order for that matter) your muscles will waste. Losing fat and muscle in areas will cause your body parts to look aged.

I am not a doctor, but if you are being treated for RA it should be treated more aggressively than plaquenil and prednisone if you are flaring. This could be Arava, MTX, Biologics etc. I am still trying to work up the courage to try Rituxin...the doctor said it is my last hope for now. However, he is willing to let me try the antibiotic therapy, but he doesn't feel it will help.



Quote:
Originally Posted by thesedays View Post
Shanibelle - are you having any issues with only 5mg of prednisone? Weight gain, moon face or the "buffalo hump"? I have not had any issues such as those but other issues I"ve noticed is that my skin seems very thin and looks much older than it did before the prednisone.

I can get down to 2.5 mg and the swelling stays away but anything less than that and I have a major flare.

 
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