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michael99
11-20-2010, 01:12 AM
do any of you have a positive ANCA test and still in remission? my ANCA test was 1:320. i have been off the cytoxan/pred for 8 months and currently on imuran. outside of feeling a little tired and a little pain in my hip area, i feel pretty good. Going back to see my doctors next month. any advice? my WG attacked my kidneys and first started feeling slight pain in hip area. Have appt. next month at JHU and my regualr visit with my nephrologist.

Sangye
11-20-2010, 01:36 AM
It's quite common for the ANCA to remain (+) even though you're in remission. It isn't an accurate indicator of disease activity in most people.

Who do you see at JHU? My doc there is Phil Seo.

I'm a bit concerned about your hip pain, since you said it was your first symptom.

Jack
11-20-2010, 03:38 AM
My ANCA has remained slightly +ve for the past 25 years even though I have been well for much of that time.

JanW
11-20-2010, 04:18 AM
I'm positive and in remission.

elephant
11-20-2010, 05:54 AM
I'm positive and in remission but my numbers came down 4 points. Yippee

Geoff
11-20-2010, 11:04 PM
I cannot get my ANCA level down, currently hovering about the 80 mark (750+ at DX) Looks like I shall be coming off Azathiaprin soon and trying Ritiximub. I was on Cellcept after my initial DX. Frustrated at my growling wegs dog!

Sangye
11-21-2010, 01:11 AM
Geoff, are your signs and symptoms improving even though the ANCA remains elevated? I sure hope they aren't basing their treatment decisions just on ANCA.

JanW
11-21-2010, 05:43 AM
Put it to you this way, Geoff, my doctor's lab only does ANCA at a positive/negative level, and high, abnormally high. (They do give a number for P3). Mine has always been positive, abnormally high and my treatment has never been based on that (other than initial dx). I sure hope, as Sangye says, they are treating the patient in your case and not the lab values.

For what it's worth, my P3 bounces around in the 60s, and has since my surgery in March, and it's never been one of my doc's concerns.

Geoff
11-23-2010, 08:43 PM
I have a roller coaster love affair with Wegs. I am extremley lucky in that my kidney function is very good and my lungs cleared dramatically after my DX and initial hospitalisation; however my ANCA level has been described as recalcigent by Addenbrookes and has stayed around the 100 level. About a year ago they called me in for a course of cyclo when it went up to 175. As I wrote previously, its now about 80 and aprt from some 'dog days' (tiredness mainly) I lead a pretty normal life. I am fortunate? to be approaching 60 but still able to work full time ( I need to as my daughter gets married next year!) Dr Jayne has increased my Azathiaprine from 150 to 250mg in a last throw of the dice to improve my markers but the increased doseage has upset me and I guess I will be looking to start on Ritiximub. I sometimes think I am my own worst enemy as I tend to 'bounce' into the Clinic in a very positive frame of mind. Perhaps I should lay it on a bit thick and moan on my next visit!!

Jack
11-23-2010, 09:10 PM
This is a problem that I have when visiting departments where I am not known. My blood results are all over the place and they want to treat me and I then have to refuse treatment and tell them that this is normal for me and that I function OK on these levels and have done so for many years. My vasculitis specialists seem to have more insight and are happy if my results are stable and I am feeling well.

Sangye
11-24-2010, 12:30 AM
Geoff, it surprises me if Dr Jayne is treating an ANCA. Have you asked him directly? I don't question a Wegs specialist but would sure love to hear his reasoning. It might help others in the group, too.

Are your inflammatory markers okay, or are they also high?

JanW
11-24-2010, 05:50 AM
I was coming to ask the same thing, Sangye -- if the inflammatory markers are high, that would be one thing, but just treating ANCA really isn't something that I have heard about before.

Like I said, the lab doesn't even compute a numerical value for me.

Geoff
11-24-2010, 07:34 PM
My CRP value of 1 has hardly moved all year (peaking at 4 in May) -ESR likewise, normally 8 and following CRP in May by touching 17. Both are currently standing at 9 and 1 respectively. My Createnine is 96 and Urea 6.9 - At a recent meeting of the Cambridge Vasculitis Support Group, Dr Jayne was the guest speaker and said that an ANCA test (anti-proteinase 3) along with a simple urine test was a good indicator of the patients status, obviously couple with a discussion as to the current syptoms etc. Whilst my kidney function is good, along with my lungs, I do suffer from fatigue and 'head' issues. NOthing as bad as most of you guys but enough to drag me down. So whilst my inflammatory markers are low, my PR3 ANCA titre has 'stuck' around the 100 mark all year. Now I am not a doctor and as much as I glean information from this forum, I put my trust in Addenbrookes who treat directly or by referral over 250 Weggies. I can only speak as I find and compared to so many on this forum I feel blessed to have come under their care. I have in the past picked up the phone and I been seen immediately by a Vasculitis specialist, had a CT scan and a consultation with a ENT guy all within 2 hours. I will have to call them as I have had to drop the Azathiaprine back down from 250mgt to my normal 150mg due to an adverse reaction. I am booked for an interim blood test in 2 weeks and this may have to be re-programmed. I currently am getting over a head cold with sinus issues and am feeling nauseous with vertigo etc thrown in. My tinitus levels have been very high during the past 2 weeks but have subsided these past few days. We will see how it goes but I have few complaints, lifes too short for that.

elephant
11-24-2010, 10:08 PM
Geoff, this wegs thing can be very confusing..esp the ones with the upper respitory stuff. I myself again going through sinus stuff, and my thoughts were...infection again, virus or little wg flare...well I am opting for the viral because my kids/husband have the same symtoms as I. It just takes longer for us weggies to get over viral and bacteria infections.
Geoff, you may have a ear infectin or fluid in your ears from the sinus stuff.

Sangye
11-25-2010, 03:40 AM
I guess it just reflects how each of the Wegs specialists maintain their own opinions on certain things, like some of them are ready to go full-steam ahead with rituximab, but Dr Seo (and probably others) thinks there isn't enough data on its long-term safety to use it as freely as ctx. My chiropractor buddies and I are the same way. We do the same techniques but still maintain our own views on things. Sometimes it's confusing to patients who naturally want uniformity in what they hear about a particular condition or treatment, but I believe some disagreement is good since it inspires research, discussion and putting one's ideas to the test.

I don't think Dr Seo has even ordered an ANCA on me in a long time. He never mentions it as a marker of my disease activity. I'll ask him about it when I see him in a few weeks.

I'm glad you're at Addenbrookes, Geoff. Their opinion on ANCA might be different, but you are receiving expert care and you're obviously doing well as a result. :smile1:

pberggren1
11-25-2010, 05:25 AM
I guess it just reflects how each of the Wegs specialists maintain their own opinions on certain things, like some of them are ready to go full-steam ahead with rituximab, but Dr Seo (and probably others) thinks there isn't enough data on its long-term safety to use it as freely as ctx. My chiropractor buddies and I are the same way. We do the same techniques but still maintain our own views on things. Sometimes it's confusing to patients who naturally want uniformity in what they hear about a particular condition or treatment, but I believe some disagreement is good since it inspires research, discussion and putting one's ideas to the test.

I don't think Dr Seo has even ordered an ANCA on me in a long time. He never mentions it as a marker of my disease activity. I'll ask him about it when I see him in a few weeks.

I'm glad you're at Addenbrookes, Geoff. Their opinion on ANCA might be different, but you are receiving expert care and you're obviously doing well as a result. :smile1:

Geoff, I agree with Sangye.

My own Wegs doc, who is from Birmingham, relys on ANCA alot for me and in diagnosing most patients with Wegs. He said he has found over the years that ANCA is a fairly reliable marker for disease activity, especially when trying to catch it early. I know my own ANCA is a reliable marker and I always keep an eye on it. If it spikes I know I am flaring and if it slowly climbs then it will spike later so then it is best to treat it early before it goes into a full blown flare.

michael99
11-25-2010, 08:18 AM
my anca test is 1:320 now and was 1:320 when i was DX. i have been on Azathioprine for 8 months and prior 6 months of 200mg Cytoxan and 60mg of pred. i feel pretty good but have some pain in the hip/upper legs. when i was DX, my kidneys were failing and cytoxan has been wonderful in getting me in remission from a kiidney perspective, just not sure if the disease is active in other parts of my body that are not life threatening. how do you guys/gals tell if other parts of your body are under WG attack???

Sangye
11-25-2010, 08:27 AM
I had "smoldering" Wegs for about 2.5 years. My lungs were okay, but I had lots of joint pain and stiffness. Nothing like before my original treatment, but bad enough to keep me from moving much.

Having symptoms in the same areas as you did with known active disease is a big clue. While my joint pain wasn't as bad, it had the same quality of pain and followed the same patterns.

elephant
11-25-2010, 12:36 PM
I would say if you are feeling really tired, joint pain, blood shot eyes or eye pain...facial pain ( sinuses), shortness of breath, headaches....But it is different for everyone.

Jack
11-25-2010, 08:56 PM
It is a very tricky question and I soon found myself lost in the symptoms and not knowing which were Wegener's and which were drug side effects. I suspect that once the Wegs has settled down most of the remaining problems are either drugs related or legacy damage from the disease. After all these years (25 years of Wegs.) I still can't figure out the cause of my deafness and tinnitus, but I suspect Wegs even though it has not been active in any other form for 20 years.

drz
11-26-2010, 01:45 PM
It is a very tricky question and I soon found myself lost in the symptoms and not knowing which were Wegener's and which were drug side effects. I suspect that once the Wegs has settled down most of the remaining problems are either drugs related or legacy damage from the disease. After all these years (25 years of Wegs.) I still can't figure out the cause of my deafness and tinnitus, but I suspect Wegs even though it has not been active in any other form for 20 years.

I was told it was most likely a granuloma in my middle ear or else dead or dying nerves from lost blood supply in area due to Wegener's. I was told surgery would be an option to restore some hearing after I am stable and off Cytoxan. Is surgery an option for you?

pberggren1
11-26-2010, 02:02 PM
drz, can you tell us more about this surgery to restore your hearing. I have never heard of any such surgery so I find this all new and interesting.

Jack
11-26-2010, 08:56 PM
My ear problem is different to that, it is a fairly simple case of fluid in the ear that will not drain due to the condition of my Eustachian tubes. Surgery was considered, but I'm not fit enough to risk it and I know that I can also improve things a lot with a big dose of steroids, but that is not a long term option.

Obviously, something is causing my tubes to remain inflamed, but no one seems to know the mechanism.

Geoff
11-26-2010, 11:24 PM
Sorry to hear about that Jack, so many compromises we have to make. Does anybody else get the same hearing issue as me, which comes to light in say a crowded room? If a lot of people are talking all at once, I find it almost impossible to converse with those nearest , whereas I can hear almost perfectly a conversation between another group across the room! Then after a while, my hearing gets distorted, like a speaker when you wind the volume up to 11 (Spinal Tap anyone?).

Sangye
11-27-2010, 01:46 AM
Jack do you take anti-inflammatory supplements (eg fish oil)? It might knock down enough of the inflammation for you to keep the fluid from building up.

Jack
11-27-2010, 04:42 AM
I tried taking fish oil capsules, but my swallowing problems meant that I could taste fish all day. Not good for a vegetarian! Any other suggestions?

elephant
11-27-2010, 05:45 AM
Has the Rheumy's thought about increasing your myfortic to see if there would be improvement in the inflammation re: ears Eustachian tube. I had the same thing Jack last year and upped my prednisone to 10 and then added the Bactrim...then that worked no ears feeling full or fluid filled...now we might increase the cellcept because of the sinus stuff.

Jack
11-27-2010, 06:01 AM
Already on Bactrim and 10mg Pred and I have considered upping the Myfortic because I am only on a low dose, but I'm reluctant to take any more than I need and the ears don't bother me too much most of the time. It's just another thing I live with.

drz
11-27-2010, 09:49 AM
drz, can you tell us more about this surgery to restore your hearing. I have never heard of any such surgery so I find this all new and interesting.

I was told it might be a cochlear implant. I think it works by bypassing the usual conductive channels by implanting a hearing aid that links directly to cochlea. My last ENT consult said I have a conductive hearing loss so surgery should help but I haven't explored it yet since I am still a ways off from being able to have it.

drz
11-27-2010, 10:01 AM
My ear problem is different to that, it is a fairly simple case of fluid in the ear that will not drain due to the condition of my Eustachian tubes. Surgery was considered, but I'm not fit enough to risk it and I know that I can also improve things a lot with a big dose of steroids, but that is not a long term option.

Obviously, something is causing my tubes to remain inflamed, but no one seems to know the mechanism.

On my only ear now with hearing I have about 10% hearing and can manage conversation in a quiet setting with the aid of my hearing aid set on max power. I notice though when I push on the hearing aid plug just right it seems to open up my eustachian tubes and improve my hearing greatly. It only lasts for a few seconds though. Yawning will do the same thing sometimes. My hearing also improved after my last hospital stay, probably because of an increase of steroids given during the hospital stay.

The down side of the hearing aid is that things in the next room often sound the same as things three feet away. The hearing is also quite variable and will fade in and out, usually at most inconvenient times. When the battery dies I am deaf so I need to remember to carry extra batteries for the hearing aid. It is a bother not being able to hear but no more so than being tired or getting exhausted from slightest exertion. I am just delighted that I can breathe without oxygen or any machines so everything else is just an inconvenience.