Good CRP report, but still feeling bad

[ameslouise]

I met with my doc today to review my most recent bloodwork. My C-reactive rate came down a lot from last time - from 5.5 mg/dl to 1.66 ( the target rate according to the Quest report is < 0.8 mg/dl) .

So - the good news is that my inflammation has gone DOWN considerably, while I am also tapering off the pred. That is good!

But the bad news is that I am still feeling kind of wonky with each 1 mg step down on the pred. My good days still outnumber the bad days by far, but I have started having a little more pain (the "knife" as I call it) and some nighttime accidents.

My doc (an integrative medicine specialist) suggested I meet with my GI doc and should get a scope and maybe an upper GI to really get a good picture. I think I would feel better if I could actually see it.

My question is: Have you had a lower of CRP number yet felt your sympoms get worse? How trustworthy is that number to indicate what's really going on inside?

Thanks for any guidance. - Amy

 

[Rob]

When I was attempting to get onto my current drug trial they did my crp score
and it came back normal - as in like a healthy persons
yet I was passing near on pure blood n was having 30-40 bm's a day
my butt was so bloody sore I had to lay on my stomach or side to sleep an couldn't sit I'd hav to kneel on the floor

they did a flexi sig and found huge inflmtion, ulcers etc so as my specialist an docs all said
crp score is BS it means squat!

 

[dreamintwilight]

That's a good question, Ames. I'm wondering myself how I had blood work done a week before I ended up in the hospital with a partial obstruction that was "normal" besides low WBC. They ran CBC and CRP. Could inflammation be normal one week and then totally crazy a week later? I don't get it. I'm going to ask my GI about that next week.

When I was in the hospital the first time, before I was diagnosed, I researched a lot about Crohn's. I remember reading that one of the methods of diagnosis was a blood test that checked for an enzyme or marker of some kind that, depending on the number, indicated Crohn's or Colitis. The same website continued on to say though that the blood test was not an accurate enough test because some people with Crohn's do not have the enzyme/marker or even vice versa! I'm pretty sure this blood test was the CRP. My understanding is that a scope is more accurate than blood because they can SEE the inflammation. Pretty sure it was the mayo clinic's website I read that on.

Kinda makes you wonder what the point of CRP is then if it's not entirely reliable.

 

[Hedgehog]

Hi Amy,
I had normal CRPs all the way through my last two flares even though I lost two stone and had ulceration. Maybe the scopes will tell you more.
Gail
x

 

[ameslouise]

Drats. That's what I was afraid of....

I called my GI doc today and he told me to go ahead and schedule the scope - May 11 is the date. I'm glad I don't have to wait too long.

Oh, and as an aside, it would be great if my doctor would refer to himself as "Doctor" instead of "Hi Amy, it's Mark, what's going on?" Maybe I'm just old fashioned....

 

[D Bergy]

I guess we are use to the title doctor, and it sounds weird to me when Physicians call themselves Doctor Bob or just their first name.

I do like the implication that they are just another person who is trying to help. Too many doctors take the title to mean, "I am way too educated to even listen to you". I have been around long enough to know an education does not make you talented at what you do. Without talent and problem solving abilities, you will only be mediocre in your given field.

CRP does not seem to be a 100% indicator of inflammation, but can indicate inflammation in some cases.

I am sure the withdrawal from the Prednisone is not helping any either.

Dan

 

[braveheart]

Well, I am not a doctor but I think I have an answer for this question. I have discussed this with many doctors because is something that happens to me too.

CRP measures the inflammation; having high levels of CRP means Crohn is active.

Once the small intestine has been inflamed for some time the inflammation can stop but it could left you kind of “internal scares”. These "scares" narrow the inside of the small intestine. You have less pain but still slow digestion, gas, acidity, etc.
Once the small intestine has been narrowed, it takes long time to go back normal. And a very minimum amount of inflammation is a lot because of previous damage on the small intestine.

That’s why doctors need sometimes to operate on to remove the “blockages”.

In any case it is good you have lowered the CRP level.

I am sorry for my terrible English

 

[Astra]

Hi Amy

sorry you're not feeling too good at the mo, glad you're getting a scope soon.
Remember when I was in hospital in Jan? My CRP was 261, and I asked what did it mean, doctor told me that altho it's used as an indication of inflammation, the higher it is, means infection, doctors use it to look for bacteria. So altho you might feel bad, and have some inflammation, there is no infection.
Heres an explanation of that - http://en.wikipedia.org/wiki/C-reactive_protein

take care, hope you feel better soon
love
Joan xxx

 

[pcbgirl227]

Hi Amy!! Sorry to hear you're not feeling better! I have had the same experience with CRP in the past as well. Prior to my surgery last yr, all my docs stated my CRP was low even though I had a complete blockage at the time. Just like with Joan they explained it was usually only elevated when there was severe infection and it was a good sign it was not high. This year has been the same thing. Like you I am having increased bathroom trips night and day, bleeding, and sharp stabbing pains - but my CRP is low 0.3mg. So go figure. Anyway, I hope you feel better and good luck with the scope!!

Candace

 

[CodeBrown]

Hi Amy...I'm am in an active state and am nearing obstruction...my CRP and bloodwork was normal (done a few weeks ago). I don't think it is always an indicator...glad you're getting a scope.