lab results

[gmyi]

Hello everyone

In my last lab results my CRP and ESR are very high bat I am with anca results negative for about two and half years I ask my nephrologists why they are high and he says that if there is no change in the results of anca and hemoglobin they will not go and make further research in that

I am interest to ear if anyone have some idea abaut it

[RCOSSIO]

One can only assume is that your WG's may be acting up. My uncle who had WG's as well never had a high ANCA test, but yet did have a high CRP. Worth looking into it further and pronto...last thing you need is a flare that gets worse!

[Sangye]

Hi GMYI,
The ANCA is not always (+) with Wegener's.

Also, your doctors need to be consulting with Wegener's specialists, who will tell them that the ANCA is not a reliable predictor of disease. They should not be using your ANCA to decide if your Wegs is active.

The CRP and ESR are reliable indicators for inflammation, but are not specific to Wegs. Any inflammation in the body will cause them to be high. Your doctors must use a combination of CRP, ESR, diagnostic tests (eg, CT scans, x-rays), symptoms and physical exam findings to tell how active your disease is.

Please ask your doctors to consult with a Vasculitis Foundation doc-- true specialists in Wegs. It's free. Here's a list of them. There are several in Europe, but the ones in the US also work with patients around the world.

[Jack]

My ANCA is always +ve even though I have had no Wegener's symptoms for many years.

[gmyi]

hello to all

Thank you all for advice and information I am going to consult with my rheumy and with an expert on autoimmune diseases in hospital

[Geoff]

Good Luck gmyi,
Its so crucial to find the right people who know what they are talking about with WG.
I am intrigued with what both Sangye and Jack have posted. I know we have had this discussion before about ANCA results, and that they may be either on a different scale on this side of the Atlantic or open to interpretation. Mine was over 700 when I was first admitted and with Cellcept I have seen a reduction to about 100 (positive) over the past 18 months. Everything seemed to be going along sweetly until a slightly random blood test, instigated by a change in dosage, has shown the ANCA level as doubling. I have an appointment for this Friday and will take your comments Sangye, with me. I am especially concerned with my lungs, which were described as very good when the disease was first diagnosed, but lately I feel as tho I have been deep breathing in a dusty smoke filled room. Rather than just rely on the bloods, I will push for a new scan.

[Sangye]

Oh, I'm so sorry to hear you're not feeling well. Stupid Wegener's. I'm so glad you've got an appt this week.

Did they increase or decrease the Cellcept dosage? Just wondering.

[jola57]

In British Columbia the cAnca goes to 200 and greater, they just don't give you anything higher. Once you hit that 200 that is it. Mine went down to 54 on cyclo and once I lowered pred to 20 it slowly rolled back up to 175. Now I am on MTX and should get the results any day. I wonder where it is now. As far as feeling, I don't notice any difference between the levels of cAnca, and here too it is not a reliable measure of the disease without the support of other tests like CRP and ESR. Both of mine are close to normal.