IVIg and ANCA negative

[mrtmeo]

I was wondering if those who are ANCA negative and have active vasculitis have such weak immune systems that their body is unable to create ANCA antibodies?

It may not be the ANCA antibodies that do the vasculitic damage, but some other mechanism which our ANCA AB's are attacking?
Theoritically, if someone is in remission with ANCA pos, their immune system maybe keeping the disease at bay.
If someone is ANCA neg, they wouldn't have an immune system able to attack the mechanism causing the vasculitis.
In this case, it makes sense for the ANCA neg person to try IV immunoglobulin injections.

[High dosage intravenous immunoglobulin (IVIG) therapy in therapy-r... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/10663019)

Also, if we no longer have ANCA antibodies, we could still flare due to low immunoglobulins.

I'm just theorizing in an attempt to understand this nasty disease and welcome all opinions.

[Jaha]

It seems logical to me, as I'm one of those ANCA negative. I have had 6 rounds of rtx and have been on every tx since 9-2012, currently on cellcept, preds and bacterium. I know that there are a lot of people far worse off than me, but I can't seem to get into remission, even though they try to tell me I am. I'm about to try anything, I am so tried of my doc blaming all my pain on fibromyalgia, yes it can be bad I understand that. What I don't like is ignoring that the CT scans, which I have about every six months continue to show activity and now my labs aren't so looking great. I am constantly getting infections and haven't had many days without pain, sob and weakness for I can't remember when. I'm sorry to turn this post into all about me, I guess I just started typing and couldn't quit whining. Thank you for the interesting article-, I'm go to check into it.:ohmy:

[mrtmeo]

It seems logical to me, as I'm one of those ANCA negative. I have had 6 rounds of rtx and have been on every tx since 9-2012, currently on cellcept, preds and bacterium. I know that there are a lot of people far worse off than me, but I can't seem to get into remission, even though they try to tell me I am. I'm about to try anything, I am so tried of my doc blaming all my pain on fibromyalgia, yes it can be bad I understand that. What I don't like is ignoring that the CT scans, which I have about every six months continue to show activity and now my labs aren't so looking great. I am constantly getting infections and haven't had many days without pain, sob and weakness for I can't remember when. I'm sorry to turn this post into all about me, I guess I just started typing and couldn't quit whining. Thank you for the interesting article-, I'm go to check into it.:ohmy:

Hi Jana,
Thanks for posting.
Have you had an immunoglobulin test done recently?
Also, do you have high inflammatory markers, such as Rheumatoid Factor, Sed Rate, CRP and ANA?

[Jaha]

I have monthly labs done and my CRP is at 1 right now, Sed rate has been in normal range for about 4months now. I haven't had any immunoglobulin test done or ANA, I think since I was dx'ed. My WBC's are at 18000,Abs neuts13.6, I had I think another UTI, but my GFR is dropping it is now at 57. I feel better when I'm on additional antibiotics and I quit taking the cellcept while on them.

[mrtmeo]

I have monthly labs done and my CRP is at 1 right now, Sed rate has been in normal range for about 4months now. I haven't had any immunoglobulin test done or ANA, I think since I was dx'ed. My WBC's are at 18000,Abs neuts13.6, I had I think another UTI, but my GFR is dropping it is now at 57. I feel better when I'm on additional antibiotics and I quit taking the cellcept while on them.

With a WBC count that high, there could be an infection going on, but it's hard to know for sure.
Your neutrophils are high which is the same for my mom.
I have only seen my mom's neutrophils go down for a day and a half and she felt so much better then.
The crp is still above the normal range that I have on my mom, so there is probably some inflammation going on.
Do you dip your urine to see if there is any blood or protein?

[Jaha]

I just finished an antibiotic for a UTI and these numbers were done before I started the script and I called the doc to get those ordered.I don't use the dip stick, I have had traces of blood, leuk. esterase, protein and ketones in several u/a over the years. My specialist doesn't seem to worry to much about it. I think I going to get some to use and I will be having my monthly blood test next week.

[mrtmeo]

I just finished an antibiotic for a UTI and these numbers were done before I started the script and I called the doc to get those ordered.I don't use the dip stick, I have had traces of blood, leuk. esterase, protein and ketones in several u/a over the years. My specialist doesn't seem to worry to much about it. I think I going to get some to use and I will be having my monthly blood test next week.
My mom's nephrologist wouldn't prescribe the strips saying they weren't necessary, but I completely disagree.
They are not his kidneys, so he has nothing to lose.

[drz]

My mom's nephrologist wouldn't prescribe the strips saying they weren't necessary, but I completely disagree.
They are not his kidneys, so he has nothing to lose.

I think you can order them online without a RX. Ask your pharmacist if he can get you some. You can always ask another doctor to order them too. my Weg expert at Mayo strongly recommends them for me given my past kidney damage from Wegs.

[mrtmeo]

I just finished an antibiotic for a UTI and these numbers were done before I started the script and I called the doc to get those ordered.I don't use the dip stick, I have had traces of blood, leuk. esterase, protein and ketones in several u/a over the years. My specialist doesn't seem to worry to much about it. I think I going to get some to use and I will be having my monthly blood test next week.
Hi Jana,
I hope and pray you can get into remission.
Since your kidney function is getting worse, are you working with a nephrologist?
The issues with your lungs is very concerning and it is difficult to monitor.
So much can happen in a short time with the lungs.
Let us know how things go.

[Jaha]

I had a phone call from my Rheumy at CC on Friday evening, she was finally getting back to me about referrals to other Drs. I had requested in Dec. I had called the office to ask about changing rheumy's because she is apparently to busy with taking on patients of a doc that retired. She was really sorry that I wanted to switch docs but, she said that she had put the orders in and that somebody dropped the ball in the other depts. She told me that if I needed her she would take me back as a patient. She gave me her opinion on choosing one of the two that I had wanted to move on to. Today, I looked on My Chart and there were appts. made for me for next week. It will be very weird to see someone else, but I think it will be a fresh look at things. I am also going to see a neurologist and a gastroenterologist. I'm still need to get looked at by a kidney doc and then go back to my pulmy and ENT. It would be so nice to just have one doc for this crapy disease. Just given an update, take care all.

[LisaMac]

Good luck with all of that.

[drz]

[QUOTE=Jaha;95253e It would be so nice to just have one doc for this crappy disease. Just given an update, take care all.[/QUOTE]

This bugs me too. I see a dozen plus different doctors at 11 different locations but don't have anyone doctor to help coordinate my care. The specializing today in the health care system is very frustrating to me as a consumer of health care. I recognize that it would be an almost full time job for any one doctor to try coordinate all my medical care. So I have to get copies to carry along since requests to send info from one doctor to another often seem to get lost or the doctor I am seeing can't locate the info or find it or access it for some reason. Most don't want to be bothered either with trying to sort out info from all the other doctors and just want to focus on their special area and any important changes since you saw them last.

I have got pretty adept at tracking my labs, and juggling and scheduling my many appointments, but some times I guess wrong or don't correctly anticipate what symptoms warrant a visit to which doctor. It is stressful being a full time patient in the health care system and a tough job but I guess some one has to do it and that I was one of those selected to do it. I have met some nice people though in the health car system who recognize me on sight.

[mrtmeo]

I had a phone call from my Rheumy at CC on Friday evening, she was finally getting back to me about referrals to other Drs. I had requested in Dec. I had called the office to ask about changing rheumy's because she is apparently to busy with taking on patients of a doc that retired. She was really sorry that I wanted to switch docs but, she said that she had put the orders in and that somebody dropped the ball in the other depts. She told me that if I needed her she would take me back as a patient. She gave me her opinion on choosing one of the two that I had wanted to move on to. Today, I looked on My Chart and there were appts. made for me for next week. It will be very weird to see someone else, but I think it will be a fresh look at things. I am also going to see a neurologist and a gastroenterologist. I'm still need to get looked at by a kidney doc and then go back to my pulmy and ENT. It would be so nice to just have one doc for this crapy disease. Just given an update, take care all.

It is really crazy with seeing all these specialists.
It is like drz says that we have be our own coordinators.
I think there needs to be a school for vasculitis that teaches us how to manage our disease.