c ANCA positive post GF?

[Pebblesnz]

Hi I'm a real newbie on this but trying to get some awareness / thoughts on a positive test result for my daughter. She's just turned 18 and early march had glandular fever with strep c throat. We started to look at her overall health as despite being fit and healthly, excellent diet, no smoking or drinking, she's been struck by a few things over recent past 4 years. She gets hammered if gets the flu , had shingles, cysts surgically removed......etc etc. Recovery from GF is tough, major fatigue and some other odd symptoms we put to food intolerances as seemed to improve a bit by stopping dairy and gluten. Dr took extensive bloods which also identified major hormonal issues, plus a positive c ANCA result. Dr called on the weekend and said she was calling the hospital to see if she needed acute admission , which she didn't , so of course I'm googling what GP said and am really really worried. Aside from hormone levels being so low the only other out of kilt was the LFT liver function test which sated it was indicative of hepatocellular dysfunction likely cause virus, she's also still showing positive for strep, throat still not clear and glands still up. I'm so worried but trying not to freak myself or her out. Does anyone have any info or shared experiences of encouragement ?

[monikagoyal]

Its really sad to hear about your daughter but you are on the right site to get some awareness.

[Pebblesnz in reply to monikagoyal]

Thanks so much , what could it all mean ?

[monikagoyal in reply to Pebblesnz]

I can't say very much in your case.i have c ANCA vassculities and i am taking steriod and rituxan infusion. Talk more to doctor.

[monikagoyal in reply to monikagoyal]

I agree with Chris.it should be proper diagnosed and treated soon. I have ANCA with GPA.

[Chris-Bromsgrove]

Hi Pebblesnz

The fact that your daughter is c-ANCA positive points to vasculitis but a diagnosis can not be made on that symptom alone. It does however narrow things down to the ANCA associated vasculides (such as Wegeners Granulomatosis (GPA), microscopic polyangitis (MPA) or Churg Straus Syndrome). The symptoms of these diseases tend to be non specific but is you refer to the Vasculitis UK website it does provide a lot more information. Your daughter doesn't seem to be presenting with any of the "classic" symptoms of ANCA associated vasculitis but the best thing to do would be to get a referral to a doctor with vasculitis expertise. Due to the rarity of the disease this may mean having to travel but if it is vasculitis then the sooner it is treated the better.

Chris

[Emilyrossiter]

Hi. I'm Liz. My daughter is 13, nearly 14. She suddenly fell ill about 5 years ago. V similar to your daughter. We have just had a second opinion at great ormond street . Em has urticarial vasculitus .. She's had a positive anca result in the past and has been on most of the big heavy drugs in the last year because of the anca positive result. Great ormond street doc, Dr brogan gave us some good news that he thought em would live a long and full life. Try not to worry too much otherwise it can eat you up. My advice would be to not rely on gp's and get a referral to a hospital with a good knowlege of vasculitus and make sure your daughter is under the rheumatology team ... I'd also explore all the options before the big drugs... Emily didn't do v well at all on them but that's not to say they haven't helped lots of other people .. Key is to make sure you are with the right specialist . Hope that helps. Good luck

[Pebblesnz in reply to Emilyrossiter]

Thanks so much Emily I'm glad your daughter is doing well, it's interesting reading that glandular fever can set this off also. My daughters only note able symptoms I can see is what looks like her ezcema which she has had for years off and on, I wonder if it's actually related?

[Pebblesnz in reply to Emilyrossiter]

Liz I'm just wandering did your daughters skin look inflamed like ezcema and was very itchy ? I'm actually wondering if my daughters "ezcema" is in fact urticarial?

[Tony-LakeDistrict]

The most important thing you can do is find a vasculitis specialist, they will have the experience & knowledge to deduce what form of vasculitis your daughter has, & the `tools` to bring about remission, & hopefully normality to your daughters life.

The very best of luck to you both.

Tony

PS go on line & download the vasculitis route map

[Pebblesnz in reply to Tony-LakeDistrict]

Thank you so much , I just have her blood results now and a referral to rheumatologist, I'm not sure if the pr3 and mpo components are negative as it shows <0.2 AL (<1.0)

Both read the same .

I'm not trying to diagnose her myself , just trying to get understanding and comfort myself, I'm the worrier but doing it behind the scenes . I can't thank you all enough for even replying .

[mrtmeo]

Getting the vitamin D levels into the optimum range of 60-80 ng/mL can help modulate the immune system fight any infection.

I used 4gms vitamin C for shingles and the symptoms resolved within 3 days and also, had D levels in optimum range.

C-ANCA is common with wegener's, but there are cases that are negative, so it is wise to keep a close eye on kidneys and lungs. Urinalysis periodically is very helpful just incase.

[Pebblesnz in reply to mrtmeo]

Thanks all other bloods look ok, kidney within range, LFT a little out but she still has strep present in bloods.

She takes powdered vit c too.

Can you have a C. ANCA positive with PR3 and MPO present ? I'm a little confused on the results of those which read as

< 0.2 AI ( < 1.0 ) this is the same result for both.

I read this as below range? Am I wrong ?

[Pebblesnz in reply to mrtmeo]

Thanks, is a renal function blood test appropriate to identify kidney issues or only by urine ?

[Chris-Bromsgrove in reply to Pebblesnz]

Hi again PebblesNZ

My experience is that the urine test looks for evidence of blood and/or protein being present (an indicator of kidney malfunction) and the blood test is to look at Creatinine levels which is the waste product produced by the muscles which the kidneys filter out.

You also asked about ANCA levels. Generally speaking once the drug regime has kicked the vasculitis into remission you become ANCA negative. However remission is not just measured in terms of the ANCA level. It's about what your bloods show and how you feel, inwardly and outwardly. You can still be ANCA positive and be in remission (as I am) and you can be ANCA negative and still have symptoms of the disease.

Hope that is helps but you must feel you are being bombarded with facts and figures at the moment.

Hope the visit to the Rheumy was fruitful. Chris

[Pebblesnz in reply to Chris-Bromsgrove]

Thanks so much Chris , visit was excellent , what we learnt was that under illness you can produce c anca positive and that's it, unless the other readings are high enough it's like a false positive , so no GM, next stop neuro endocronologist for pituatory dysfunction . I can't thank you all enough for easing my mind during this time , it's still going to be a long recovery and she is back on a low dose penicillin for the strep which is causing other issues, mainly cognitive, that's another thing. Crazing amount of things going on. But bless you all

[AndrewT]

Dear pebblesnz,

Sorry to hear about your daughter-you must be worried sick! That's the bad news over, well most of it anyway.

To answer, at least some, of your questions, you have to first understand that 'Vasculitis' is rather a 'blanket term'- that describes a type of Auto-Immune disease. (I said 'a type' but I could, just as easily, said 'a whole host'). Because of the complexities involved- and few of us profess to understand these in there entirety-nothing can be 'ruled out', or indeed, 'ruled in' exactly. I am aware that this is NOT much help!

Vasculitis splits, very roughly, into ANCA and non-ANCA which further split and split, and split......You get the picture! Most people do however have, at least, one reliable 'marker' that indicates vasculitis. In my case, apart from blood tests, it is redness in my left eye-this being the eye that was 'attacked' in the first place. (Did I 'get away' with only a red eye? No I f.....g did not!). Most of us get 'other symptoms, either from the vasculitis itself or the medication, which typically include aches & pains, 'tummy troubles' (odd pains 'wind' constipation-especially that), hair loss and, not forgetting, indigestion. One poor dear girl, that I have known for years, gets so 'plugged up' she could scream!

Regarding blood results, you are right, they do get confusing-to add to this is the fact that you can feel 'fine' when the results say otherwise, and like sh-t when the results say you are great. This isn't much help either! By now you probably want to shoot me, don't you?

Now let me offer you some 'helpful' advice. First of all, despite everything that you have read- and that includes my contribution-try not to worry. (I am aware that this is rather like telling a drowning man he doesn't have to be afraid of the water!). Next question where do you live? Can you by fair means, of foul, get to Cambridge? Dr David Jane, the country's (possibly world's) leading specialist is based there. (He is also an advisor to 'Vasculitis UK', our sister organisation). Dr Jane's Team will, I'm absolutely sure, be able to help your daughter-he is a very 'nice' man (God I hate that phrase!) and he/they will, I know, go out of his way to help.

So, despite frightening you half (only half??) to death, then telling you not to worry. Probably confused you, still further, I have, at least, finished on a positive note. I am genuinely sorry if I have upset you Pebbles, it wasn't my intention honestly. Please do try not to worry-even if your are both 'going down for the third time'. I leave you with all our love, and prayers.

AndrewT

[Pebblesnz in reply to AndrewT]

Bless you Andrew you made me smile, I'm in little ole NZ we do have a Cambridge but not yours, ours mainly consists of race horse stud farms and a great rowing lake on the Waikato. She does get tummy upsets but only when having dairy or gluten, does get swollen knees if she does too much impact like jogging , she has severe pronation on her feet, and really that's it.

Poor girl still has so much going on with hormones and strep, I was reading too that it could be result of penicillin which she was on .

[AndrewT]

Dear pebblesnz,

Sorry I should have 'cottoned on' to the nz-being New Zealand! My advice was, in your case, about as much use as a chocolate tea pot-or a bucket with a hole in it! (though if a bucket didn't have a hole...How would you get the water in???)

I confess to knowing very little, indeed almost nothing, about New Zealand, apart from-I believe that you have more sheep than people, is this right. It's Ok I'm not setting you a mammoth- indeed a lifetime, or twos, counting...just wondered if you knew.

I really do wish your daughter well, I know that 'everyone' echo's this.

Sorry that I was about as much good as a bent nail!

Best wishes AndrewT

[Pebblesnz in reply to AndrewT]

Oh Andrew you make me belly laugh after such a tough few days 🙈 yes indeed more sheep than people I think over here.

We got into a rheumo tomorrow. Luckily where I am I can drive from one side of the country to the other .

Does anyone have any experience where a positive c ANCA was reversed completely when good health was restored?

It's just weird as she has no obvious symptoms at all, I've also read penicillin can activate vasculitis, she's just finished this due to the glandular fever and strep c .

Or I'm hoping a false+ ?

[Christophene47]

Hi Pebblesnz,

I can imagine how difficult it must be for both mother and daughter dealing with such uncertainty. The only thing I can say from my own experience is that being C- ANCA + seems to be associated with a viral origin. I had 2 mild viral episodes one month apart; in between fine; virus not upper respiratory and not gastrointestinal, just extreme fatigue, aches and pains. Two years prior had tropical mosquito borne chikungunya virus known to cause autoimmune problems approx. 2 years after recovery from acute infection.

A couple of days after 2nd more recent virus, developed a level of muscle upper body pain I could not ignore; also a growth on right hand; the growth was ,on biopsy , a granuloma annulare, and that brought me to rheumatologist who diagnosed granulomatosis poly arteritis. (GPA.) I sought a consultation for a 2nd opinion with the vasculitis unit at Johns Hopkins University; that doctor did not think I had GPA, mostly because my titre was low, but I had already been on prednisone for 6 months before an appointment was available.

A few months after seeing her and slowly tapering off prednisone at her recommendation, I lost vision in left eye for a few minutes which I knew is a symptom of vasculitis.18 months later, still being referred from specialist to specialist.

Usually, the first course of action is a trial dose of Prednisone. Is she in a lot of pain? You do need to push the GP for a referral to a rhematologist experienced in ANCA associated conditions. This can happen at any age.

Wishing you and her the best...