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#272590 - 11/08/15 10:32 PM So which one is it!?!  
Joined: Oct 2015
Posts: 2
operasinger Offline
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operasinger  Offline
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Joined: Oct 2015
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Here is my tale:

So after 6 months when all of this started with a gout attach, I was diagnosed with axial spondyloarthritis...I think.
I have tested negative on every CT, blood test, colonoscopy, EGD. Sedimentation, C-Protein normal HBL-27 negative, as of now but I do have high WBC inflammation and signs of pain the back and thoracic area (costocondritis). 6 months of not working out and yet losing weight...have lost all muscle...used to work out 5-6x a week

Through this entire ordeal I have been on 30mg of Prednisone which SUCKS!!!!! but has kept me mobile, 400mg of Celebrex and colchicine since apparently I still have Gout.

I just finished my 4th shot of Enbrel.

My Life is a roller coaster of Fatigue...non stop. More tests...non stop

My questions?

So my Rheumy is asking if the Enbrel is working. I can't answer because I don't know what's the Enbrel and what is the roids. If you are currently on can you tell?

I started doing yoga stretches via Youtube and doing some walking and body exercises because my doctor refuses to have me see a physiotherapist until the med kicks in...I'm waiting for that too...he said one or two more shots if not we are switching to something else.

I'm trying to cope with this...I am an opera singer and would like to get back on stage...I'm afraid it will never happen. I have only been dealing with this for 6 months...never had a problem at all or history...

Any insight would be appreciated

#272619 - 11/12/15 12:43 AM Re: So which one is it!?! [Re: operasinger]  
Joined: May 2010
Posts: 1,368
WhiteCell Online
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WhiteCell  Online
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Whidbey Island WA
Hello Singer

Increased WBC reveals quite a bit though taking prednisone can elevate the WBC count itself. Your rheum should take measurements of mobility to evaluate if you are responding to the treatment. Also pain reduction (or increase) and which areas.

It seems like from the sound of things are staying same and may be getting worse (muscle debt). If I were in your shoes I would seek a 2nd opinion from a known center of excellence depending upon your location. One question. How is your diet and how much weight have you lost in the last year?

Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon.
Started Remicade 2002 - 5mg/kg every 7 weeks.

Right Eye Glaucoma- Trabeculectomy/lens replacement 2006.
Right eye DSEK Cornea Transplant 2009.
Right eye Ahmed Shunt 2016.
Right eye DSEK Cornea Transplant 2016.
Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.

ICU RN - Seattle, WA

~Grasp The Challenge and Succeed~
#273611 - 03/15/16 06:03 AM Re: So which one is it!?! [Re: operasinger]  
Joined: Sep 2015
Posts: 6
LarryC213 Offline
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LarryC213  Offline
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North Carolina, united States
Hello Opera Singer, I cannot answer or comment regarding those first things that you mentioned, but I can say the following:

It seems very odd to me that you are taking that much prednisone and you are losing weight. It is usually the opposite, at least for me and anyone else that I have ever spoken with who had to take that high of a daily dose of prednisone.

It has been a good while since my doctor tried giving me these two different types of medicine. One was Humira and the other one I cannot recall, it might have been Enbrel, but I cannot be sure. The Humira was a shot that I gave myself, and the other drug I tried was administered through an I.V.. The Humira worked for me, whereas the one that was administered through an I.V. did not work for me. Every time I tried it I would have a bad reaction.

I agree with the other poster about trying to find a very qualified center and physician and getting a second opinion. Good luck to you and please let us know what you find out.

Larry Campbell
North Carolina

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