Kind of sad - high SED rate

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/22/2009 2:23 PM (GMT -7)   
Well, after 5 days in the hospital on IV steroids followed by a 40mg methylpred dose/taper (equivalent to 50mg prednisone) my sed rate is still 78.  (I'm at 20mg methylpred now = 25 pred)  The hospital and highest dose of steroids was 3 weeks ago, so I think my sed rate should have had time to lower more than that.  I wish I knew what it was while I was in the hospital.  I'm going to call the doc on Tuesday, after the holiday and see if they ran a ESR there for comparison.
 
Anyway, all of this while on my 5th dose (2nd maintenance dose) of Cimzia.  I suppose that means I'm failing another TNF.  If that's the case, I'll more than likely have to do the temporary ostomy.  The Prochymal trial (open label) now cancelled and the only left, if I do indeed fail Cimzia, is steroids.  I already have osteoporosis and can't keep up the oral steroids.
 
Rolling with the punches, but it sure gets frustrating...
 
Thanks for listening.
 
 
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 5/22/2009 2:29 PM (GMT -7)   
Sorry to hear that you aren't doing better than that.

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 5/22/2009 6:40 PM (GMT -7)   
I am blown away by the fact that your SED rate is still so high after all those steroids. Your body is really trying to say something evidently. I hope that the coming days find you getting some relief. The decisions you face aren't easy. My thoughts will be with you...
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/22/2009 8:25 PM (GMT -7)   
Thank you for your support, always. I know (or feel like I know, not being pessimistic) that at some point the ostomy will be a reality in my world. I just hoped I'd hold on for the dang stem cells - at least Prochymal somehow. But sometimes I think it's all so silly... I could just go get a temp ileostomy and *live* my life for a couple of years instead of always being so sick. I am so tired of fevers, night sweats, daily pain and all that ickiness. But, I suppose all of us are. And, it's not like me to be sad but I guess I'm just scared. (At first they were saying permanent, but I'm not ready for that yet.)

The surgeon told me the if I do the temporary she can do a small incision 2-3" or so. I guess I am scared of the full pelvic to ribs cut. So many of you have done it and it's seems silly for me to be so scared of it. But, I am...

Then I think if I'd go get the surgery maybe I'd look back and wonder why the heck I waited so long. A few weeks ago while I was in the hospital it really hit me that I want to be better if for not other reason to be a better mom to my daughter. Not that I'm a "bad" mom in any way (!!) - I just want to feel well enough to take her out to the fair or skating or bike riding or whatever without anxiety or pushing myself too hard. I try so hard but sometimes it all gets the better of me and I just can't keep up with life.

Typically I am a super happy person... Optimistic with a realistic tendency. I feel like Crohn's has really hit me hard, though it helps to remember perspective - there are so many people out there with even more challenges. I started Celexa while I was in the hospital thinking that it would be good for me, especially if I'm staring down the road at surgery. Actually, until I got the news today with my sed rate, I have been in great spirits. I know I need to remember it's how I feel that matters, and if I'm feeling better, that's good! I was just shocked at how elevated given the steroids, too.

Anyway, now I'm rambling. Thanks again to all... Tomorrow is a new day and thankfully it's sunny and beautiful here. Oh, and now I have another neighbor's cat on my porch. Maybe they all know? ;-)
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine  --rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone, Tysabri
--Prochymal in Phase III study (can't wait til it's approved!)
--currently taking methylprednisolone 40mg-taper.  Started Cimzia first dose 2/10/09.  Dx Osteoporosis 10/08 started Forteo 1/27/09
--single mom to 11-yr-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/23/2009 1:21 AM (GMT -7)   
(((Shari)))
Co-Moderator Crohn's Forum.

New meds thread


LynnRN
Regular Member


Date Joined Oct 2007
Total Posts : 289
   Posted 5/23/2009 5:42 AM (GMT -7)   

Feel better soon smilewinkgrin

 

What was your sed rate before??

Mine was 98 about five years ago and it took a few mths for it to come down with the steroids. Hang in there,I know it's frustrating,agghhh.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/23/2009 7:34 AM (GMT -7)   
Oh dear, I am so sorry to hear that. Sending healing prayers your way.

Big Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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