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Danica01
07-09-2012, 12:48 PM
It has been a while since I have posted on this wonderful forum. I have been keeping in touch with everyone on Facebook and it has been wonderful seeing everyone in their pictures and learning from them!

I have recently started having tests done at the Mayo Clinic in Scottsdale AZ. I have had Lupus (SLE) for 10 years and have been on many treatments plans over the year. Over the last year I have had a lot of issues with my kidneys. I have reoccurring infection of the kidneys and bladder. I have been on antibiotics off and on since October and the longest I can go without them has been two weeks. I had surgery in April because they thought I had some form of stone because of the reoccurring issues. I did nit have a stone and the problems continue. During my tests at Mayo my urine came back with elevated white blood cells, it was hazy, dark and actually had little things floating in it. My platelet count came back very high, low vitamin d, low calcium, high sed rate and I have a positive p-anca (that si what worries me the most). The positive is that I have a negative ana, antinuclear antibodies finally tested negative and my ds dna looked good. I am just not sure about the tests that came back positive.

I am just wondering if anyone has any idea what the new positive tests mean. Thanks so much and I look forward to seeing if anyone else has gone through the same thing!

ritzbit2
07-09-2012, 01:54 PM
From what I saw online p-anca is related to vasculitis. Maybe the blood vessels of your kidney and bladder are inflammed?

http://www.muschealth.com/lab/content.aspx?id=150470

http://www.vasculitisfoundation.org/ANCAtest

Danica01
07-09-2012, 02:53 PM
That is what I found. I was hoping ti would just be another little thing that pops up regarding my Lupus but I am slowly figuring out that this could be a problem all on its own. I am pretty nervous about this. I see the doctor again on August 3 and August 6 so I have a little but of time on my hands. I see the internist in about a week so I will ask him what he thinks about all of this. Thank you sooooo much for the links! I am looking at them as we speak!!!!!

jmail
07-09-2012, 05:11 PM
I looked up the anca part of that, and found http://en.wikipedia.org/wiki/Anti-neutrophil_cytoplasmic_antibody (any relation to Paul?). But don't worry yourself about it Danica until you have to. There's mention on there about association with ankylosing spondylitis and RA also, which makes sense. Have they checked your hemoglobulin levels?

Danica01
07-09-2012, 10:24 PM
That you so much for researching it for me. That is exactly what my better half tells me. He tells me no matter what it is it is there and there is nothing we can do about it right now. I am not sure about the hemoglobin levels.......

A1 Globulin 0.3 g/dL 0.1 - 0.3
A2 Globulin 1.0 g/dL 0.6 - 1.0

Is that what you were talking about???? It looks like I am on the high side of normal. What do you think????

Danica01
07-11-2012, 10:39 AM
I just wanted to update all of you. Tomorrow I will be going to see my internist to discuss the lab work and concerns with both might have at this point. I will keep you posted!

jmail
07-11-2012, 05:40 PM
I "mis-spoke" there Danica01... hemoglobulin is the part that carries the oxygen in our blood... too many globulins and goolins in us... I meant to "say" immunoglobulins. That's the disease fighting components (antibodies) IgA, IgD, IgE, IgG, & IgM. They can tell all sorts of things about a person's health and what's being fought off with what, by comparing the different levels to each other. Most times, a person *might* get a total immunoglobulin count, which can tell if you're low or high overall, but not the relation between them all. Most times, they're just used as confirmation for diagnosis of different conditions. Probably not beneficial to a vasculitis diagnosis, but might be useful if you're experiencing recurrent infections.

magistramarla
07-11-2012, 09:51 PM
Hi Danica,
I responded to you in another thread, but I'll say it again - welcome back, girl!
My daughter has recurring kidney stones and often has a lot of crystals in her urine. Have they mentioned crystals to you?
I hope that the doc had some explanations for you today.
Keep us updated.
Hugs,
Marla

Danica01
07-13-2012, 06:03 PM
I made it through the appointment yesterday. The doctor explained that this positive test is found in systemic vasculitis. Now we will branch off of that test and see what antibody I test positive for with the positive P-ANCA. He put me on a months worth of steroids to get me through to the next appointment. He said that will help the Lupus flare and the vasculitis. I have to admit that I am a scared. It seems the systemic vasculitis diseases are very rare and therefore do not have a lot of treatments. Depending on the stage, we may do an intense month of chemo which will make me sick! Along with that I will do 12 months of steroids and 12 months of Bactrim. Also during all this time I will continue with the Methotrexate and may throw in Humara. Time will tell and early August we will have even more answers than we do now! Patience is the key!

jmail
07-13-2012, 07:15 PM
Good luck with it Danica. My sister had to go through chemo. She said it's not as bad (still ain't easy) as it used to be. You might ask your doc about IVIG Infusion (http://en.wikipedia.org/wiki/Intravenous_immunoglobulin) as a treatment also. I don't think you'll find an insurance company that will pay for it for SLE though. It runs between 9 & 12k a treatment. I happen to be CVID (which is why my last rheumy said I couldn't have SLE), and it definitely takes the edge off of just about everything (the IVIG). I haven't had bad issues with my skin since, and my joints hadn't hurt too bad until recently, although my lungs are still deteriorating. I do not see a listing for vasculitis on that web page...

As you say, "Patience is the key!"

steve.b
07-14-2012, 03:20 AM
one of the things i tell myself in times of medical concern......
what is the other option?
at least i am alive and will continue to live, with the treatment.

i have had a few scary things happen to me recently, and have had to put everything into perspective.
if it takes chemo to give you back your life .......................
without it what is the outcome going to give you ????????????

sorry for being blunt, but this helps me.
and i have seen some very good instances of modern medicine at work recently.
i get a lot of satisfaction from seeing the positive possabilities from modern medicine compared to no medicine at all.

Danica01
07-14-2012, 07:34 PM
Thank you so much for that information. Now I will share something with you http://www.rarediseases.org/. If it is one of the rare forms of systemic vasculitis I can qualify for assistance through the government for treatments that our insurance companies won't pay for. I was doing some research last night and stumbled on this. I read through it and thought that is fantastic to possibly have help if needed. They were saying on the systemic vasculitis sites that this is the most mild medication you can use and it really helps but, like you mentioned, it hard to even afford one dose let alone many. Why is that????? I have never been able to wrap my brain around that issue when it comes to all of us feeling better. I have to say that my lungs are a train wreck right now. The asthma I have is miserable and to even walk up and down the steps can be trying on those little lungs I have. I really hope looking into this new disease will help with that.......I better not hold my breath.....I may pass out:-)

Danica01
07-14-2012, 08:31 PM
I have shared this on another thread but you might like it.....http://danica-thethingstheydonttellyou.blogspot.com/

It is my blog. When I was feeling so bad back in May I decided to get it all out through writing. It helps me vent and gives me hope. You are right, what is si and what will be will be and we are left dealing with it but we can choose how we go through it.

magistramarla
07-14-2012, 09:39 PM
Danica,
I'm glad that you have such a great attitude. It sounds like you have a very thorough doc - good for you!
Please let us know how this all works out - I'll be thinking about you.
Hugs,
Marla

Danica01
07-15-2012, 10:17 AM
You bet I will!!!!! You all always make me feel so much better and bring so much joy in my life. I will be needing all the support I can get over the upcoming months!

tgal
07-15-2012, 02:18 PM
Keep us posted. My thoughts are with you.

Danica01
07-22-2012, 08:47 PM
Still waiting for my appointment and I have to admit I am not being very patient but I know it will be here before I know it and hopefully we will get some much needed answers regarding this test and what it means. I am more convinced it is a form of vasculitis. I will keep everyone posted as my appointments and test come and go!

Danica01
08-02-2012, 02:21 PM
I just wanted to update all of you.........tomorrow I will be at Mayo for a six hour neurological exam and finally Monday I will see the Rheumatologist and I am hoping we have some answers. I will keep you all posted!!!!!!