Anca

[gwenllian111]

Hello!

How relevant is ANCA levels in the management of WG?

I've been ANCA negative for a while now, but am now ANCA + 1/80 .

Do you guys know what your ANCA levels are?

[Sangye]

My JHU doc doesn't even order the ANCA. He said it's useless in the majority of people.

[pberggren1]

I agree with Sangye.

BUT my case is the rare one where the C-ANCA spikes up to over 25 or 30 when I am flaring and down to below 10 when I am not. Gwen, I know that my levels are not directly comparable to your levels because they are tested or reported differently.

[elephant]

I think my ANCA levels reflect how I am doing, but most the Rheumy don't check it that often. They go more by symptoms.

[JanW]

My rheumy is like Sangye -- won't check on it or rely on it as a measure of disease activity.

[pberggren1]

I forget Jan, which Rheumy do you see and where are they located?

[JanW]

Arthur Yee, Hospital for Special Surgery in NYC.

[pberggren1]

Is it a big hospital? Say compared to the one Jack goes to in Birmingham, UK?

[JanW]

It's a major teaching hospital in NYC, affiliated with Cornell (Ivy league colleague). It has the largest rheumo service in the U.S. and has been voted as the top rheumo service in U.S. by U.S. News & World Report (for whatever that's worth). It's a specialized hospital -- orthopedics, sports medicine and rheumotology is what they do. When you think about it, those specialties definitely fit together.

[jola57]

My cAnca spikes to over 200, it is now at 154. All my other test are within normal range (except liver and creat) so for me the anca test is an indication of the disease. I am hoping that when I reach a very low level I will trully be in remission.

[malin]

My ANCA seems to spike when I'm having a flare and have not yet gotten my medication adjusted.
When I was first diagnosed I was told my ANCA was over 450, yesterday when I was my Rheumy she said it was down to "normal", which is a first for me, however she said it might be down to the fact that I'm back on predn. so it's hard to tell.

[Sangye]

Hi Malin, we haven't met yet. Welcome to the group! Does your ANCA spike before you know you're flaring or once you already know it? I'm just curious about its usefulness for you.

[malin]

Sangye - To be honest I'm not sure at the moment, It's only recently that I've even been told what my blood results are! (since getting my health "stuff" sorted here in the UK)
I've had a lot of flares that have been left untreated which is down to poor treatment from my old Swedish doctors, which is probably why it's taken so many years for my ANCA to actually drop down to a lower level.

However, my UK rheumatologist goes more on the resluts of my ESR and CRP than on the ANCA but my ANCA seems to spike slightly whenever my ESR and CRP are also spiking, they seem to move together.

[Sangye]

It sounds like your UK doc is doing the right thing by relying on the ESR and CRP rather than ANCA. I hope they get things better controlled for you!

[SebastianCRO]

I have chekups every 4 weeks.
Here are some of my stats.

8/09 - SE 43, ALT 59, GGT 39, ANCA 83, RF(reumafactor) 17.8, CRP 21.1
3/10 - SE 27, ALT 36, GGT 32, c-ANCA 71 ,p ANCA - 1.2 NEG, RF(reumafactor) < 10 , CRP 19.1

[jola57]

Well you are answering to the meds which is good, liver getting better ANCA negative - very good. Still a bit of inflamation but overall very good. What about newer test because you are flaring - have them taken now to see if you are up again in the stats since these were way back in March

[SebastianCRO]

Well you are answering to the meds which is good, liver getting better ANCA negative - very good. Still a bit of inflamation but overall very good. What about newer test because you are flaring - have them taken now to see if you are up again in the stats since these were way back in March

I am going to my MD on the 18th,then I`ll get my "letter" with all the stats in it.
Ill update my reply with the new ones,I'm also very interested in how high did the ANCA go.

[pberggren1]

My C-ANCA for May 5 is down to 7 from 11 on April 7.

[Sangye]

That's good, Phil, but I sure hope your doc isn't relying on ANCA. Your symptoms have gotten worse for several months.

[elephant]

How are you feeling Phil? Hope your life is less stressful.

[pberggren1]

Ya, I know Sangye.

I wish I lived close to one of the 4 Vasculitis Centers in the US.

I am getting a little worried and depressed.

[Sangye]

Oh, don't get worried or depressed, Phil. Use that energy to take action. Did you make any progress contacting the Wegs docs?

[pberggren1]

Actually I haven't tried to contact them myself. I have been feeling like crap. No energy, sinus and head pains that come and go, joint and bone and muscle pains that come and go.

I see my Rheumy and Pulmo on June 2. I am going to send my Rheumy an e-mail today to remind her to contact Dr. Gary Hoffman at the Cleveland Clinic. I no longer have full confidence in my Rheumy.

I would love to come to the US and see Dr. Seo but I doubt my government would pay for that. If I could afford it I would come down for sure.

[Sangye]

Phil, I think you are having a major flare. Lack of energy is a big red flag. Please insist that your rheumy contact Dr Hoffman (or any VF consultant doc) asap. He'll work on your case with her and get you back on the right track. Don't give up! Believe me, I know how hard it is to take action and push for what you need when you're not feeling well. I don't have help with my medical care and have to muster up the energy no matter how I'm feeling. You're just as tough. :)

[pberggren1]

Thank you Sangye!:)I need all the encouragement I can get.

[elephant]

You can do it Phil, I know you have alot of fire in you! You go and make that call to your Rhuemy! We are here for you! I want you better!!! :)

[DEE]

phil hang in there hope you are feeling better soon DEEx

[eileenv]

Hi Phil, hope you are feeling better and have managed to contact your rhuemy. I know how you feel althrough i haven't had a definite diagnoses yet(waiting to see the ent on the 1st of july) i called my to get an appointment to see my rhuemy early as my gp done bloods as had teribble jiont pains hands very swollen and painful, crp and esr came back at 49 and 50. He sent for me to go last week but when i went the clinic was cancelled now i have to wait another month to see him!!!.

[pberggren1]

Eileen, I hope you can get a diagonsis soon. This is going too long for you. It sure sounds like Wegs to me, but then again I am not an expert. Is Essex close to Birmingham? I know that is where Jack is and he sees the top Wegs specialists in the UK.

I will be going down to the Mayo Clinic in Rochester, Minnesota in probably August to get a second opinion.

Thanks for keeping in touch. We worry about all our fellow Weggies that come on this site.

[Col 23]

Hi Phil
Hope you feel better soon and get the treatment you need.
thinking of you
Col 23

[Hayley]

I am like many of you. My doctor orders ANCA every month, but feels that my ANCA is not a useful tool in the management of WG. My ANCA has stayed the same for about the last eleven years.

[Jack]

I think it is OK as an indicator to be used in addition to other results and observations. Another tool in the box! ;)
The whole Wegener's diagnostic process is a matter of adding up probabilities indicated by a number of symptoms and test results.

[eileenv]

Hi Phil, thanks for your reply, yes i know it has been going on ages with me i saw my rhuemy in febuary and when i got a copy of the gp letter it was querying wg but saying i had no signs so i phoned him and told him of me at times continualy blowing my nose and blocked nostril one side, he then refered me urgently to ent which has taken 10 weeks to get to see. I don't quite understand the ANCA i was c anca positive with pr32, my creatilinehas gone up to 81 it is still within the normal range and i have a trace of blood in the urine but rhuemy didn't seemed concered about it.

[pberggren1]

Eileen,

Waiting 10 weeks for any doc is ridiculous. I'm not sure if blood in urine is cause for alarm but I do know that red cell casts in urine is a sign of inflamation.

[jeriorleans]

A.J.'s doctor relies more on the Proteinse 3 level.

[JanW]

Why is that, Jeri?

[pberggren1]

I think she is refering to C-ANCA, Jan.

[elephant]

Need to get the trace of blood checked out, unless you were menstrating. See the kidney doctor...could be infection too?

[Sangye]

I always have trace blood in the urine-- no idea why, but it never changes and my docs aren't concerned. I don't have any kidney involvement. But like Elephant says, gotta get it checked out to know for sure.

[Jack]

I too often have traces of blood in urine when tested, but my renal docs don't seem to be too bothered and my kidney function does not seem to have suffered. I must say that it worries me when it happens due to my past troubles and relying on my transplant. Perhaps I should ask for a lecture on the subject if it happens again.

[JanW]

I actually answered my own question, at my doctor's visit yesterday. My doctor too tracks P3 and not ANCA as much because the way his lab does it ANCA only reads typical/atypical, but P3 is an actual number you could track. Mine went from 98.6 to 49.3 on a month of methotrexate, and my most recently results aren't back yet. However the good news is that my inflammatory numbers are all normal now (CR-P, platelets and ESR) so, yeah me!

[Sangye]

That's great news, Jan. I hope the mtx continues to keep the Wegs under control. :)

[elephant]

Jan that is great !