C2, I need your help about a lab test.

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Date Joined Feb 2003
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   Posted 9/23/2007 7:49 PM (GMT -7)   
C2 seems to me I read a long time ago, your dr runs some sort of a blood test on you to check your inflammation level. If this is correct would you mind posting the name of the blood test.
I had another set of labs done including the ANA again. My ANA is even higher than before and my C Reactive Protein is higher also. My PCP is thinking Lupus or Mixed Connective Tissue Disease. She said she is leaning more towards the latter of the two. I have an appt w/Rheummy on Oct 2 so we will see.
I am still hanging on with Entocort, Lialda, Imuran, Zofran and something else that is slipping my mind. We talked about Remicade for the joint pain, but have decided to wait and see whay the Rheummy comes up with. He just gave me a scriot Friday for something called Leobid, its an antispasmotic, I sure it works cause going to the b/r is no fun and terribly painfull. 
Still using oxygen 24/7, and need to using it. The only problem is you cannot wear it and be outside very long because the air get hot. So, I stay in the a/c. I just got a new eletric bill and nearly fainted $559.00 for one month. Last month it was                                                                                                                                                                                                             f$499 and I nearly had a cat over that one. Can't win for losing. Hope everyone is doing as well as they can be. Hugs. Susie                                                                                                                                                                                                                                                                                                                                                                                                                                       

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Date Joined Nov 2003
Total Posts : 7314
   Posted 9/23/2007 11:05 PM (GMT -7)   
Hey Susie,
I'm so sorry that things are so rotten for you right now and I hope that your Docs can helpyou to get things back under control soon. I've used the generic for Levbid, hyoscamine on and off for the cramping that I frequently get. It never really made it go away completely, but it certainly did help the worst of it. Unfortunately, the cramping is about all it's good for.

I think the test you are asking about is the fecal calprotectin. That's a measure of a protein associated with inflammation from the stool itself. It can be helpful in determining if there is inflammation in the gut, but it's not at all specific to any particular site. Based on your symptoms and the CRP, it's pretty easy to guess that a calprotectin level would be evalvated too. I beleive that this test can only be done through Great Smoky Labs (or something similar). There is another test which I know can be done through Quest and the like, but the protein that measures is much less stable than calprotectin. I wish I could remember the stupid name of that one! UUUGGGHHH!!!! oh, OK, maybe it's lactoferrin.

I haven't been doing so well lately and so I have to admit that I'm either very confused, or hopelessly behind. I thought that you had been at the max dose of Remicade on the 4 week schedule and that you finally failed it and switched to Humira. Am I wrong? If that's the case, I'm not sure that I can see how going back to Remicade is going to improve anything.

Have you not seena Rheumy yet? Maybe I just assumed that with all the problems you'd had with your knees that you had been seeing one. again, I apologize for my brain fog. I have often wondered and I think even asked you, if you had been evaluated for Ankylosing Spondylitis. The mention of possible mixed connective tissue disease makes me wonder that again. Most Spondys suffer terribly with soft tissue problems for many years before the telltale signs of fusion begin to appear. My tendonitis, bursitis, synovitis and sclerosis predated my Dx by 25+ years. Has anyone tested you for HLA-B27? It's just one more blood test while they're at it and that may help to pinpoint what's really going on. Just a thought.

You've been through so much over the years. I really hope that you catch a break and get some good relief soon. (((hugs)))
Keah a.k.a. Wormy
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Date Joined Feb 2003
Total Posts : 15534
   Posted 9/25/2007 6:04 PM (GMT -7)   

Oh Keah, thank you so much for responding to my post. How are you doing these days. I have not been around in a long time, I had to take a break. about the last I remembered with you is your dr finally took you off of work. Did you file for SSD yet? If not, please do so. At that time you were doing really poorly and I believe you were in the middle of a change in drs. You had been playing the sick game of one dr says you have this and the other says no you don't. Why do they do that.Gosh, they have such huge egos that gets in the way of everything, including their thinking.

I have changed my PCP drs and I think I made the right decision. This gal is very thorough to say the least. She does not mess around either. She orders the tests and if something shows up off to the specialist you go. Whether she does any testing or not she firmly believes in covering all the squares on the board. You know for 2 yrs now I have had trouble with my legs swelling really bad, the skin would break open & weep, then the sores did not want to heal. I would also get a fever in my legs and after the fever & heat went away the skin would peel as if I had a sunburn. She sent me to a vascular surgeon, I had already done a doppler on the legs to rule out a blood clot, and then she did a doppler on the carotid's and I have 50% blockage. She says they don't do any surgery until you are like 75% blocked. The vascular dr will see me every 6 months to monitor things. They agreed I should wear the compression hose. I did in deed buy them and they do make your legs feel so much better.They help keep the swelling down and if they are swollen usually within a few days they start going down.

Her next thing in her bag of goodies was to repeat my ANA since the one in Jan came back a high positive. In addition she ordered several other tests with the blood which helped rule out some things too. She is a pretty smart lady.So, after the new labs came back and were higher than in Jan she has ref me to a rheummy. I see him Oct 2, I believe. My blood work and tests are either Lupus or MCTD and she is really leaning more towards the latter of the two. I have far more symptoms pointing to MCTD than Lupus. But, we will wait and see what this rheummy thinks. I read a little at the Mayo Clinic on it, not much really posted that I could find on MCTD. I saw one of the treaments is Prednisone, well that one is out for me, no roids of any kind. My pulmonary dr does not get flustered because I cannot have steroids. I am on the oxygen 24/7 and numerous meds for lungs. Its nice not to be falling every time I turn around. I just was not getting enough air and I would pass out and hit the floor or stairs. I fell twice down the stairs in the house. How I kept from hurting myself badly and not break bones is a miracle.

Please post and let me know how you are doing. I really miss alot of the ole regulars on here. Hugs, Susie                                                 



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