Titers?

[Maestra]

I have been under evaluation for a kidney transplant. The kidney doc there is requesting a titers test since I seem to always test positive in my p-ancas.

Anyone know what a titers test is? What it's looking for? I see my kidney doc on Tuesday and will ask, but thought I'd try here too.

Thanks!
Heather

[Terri]

Hi Heather,
Sorry to hear your having problems. You've come to a good place for advice.
I"m sure there is somebody on here that can answer your question.
The only thing I know a titer test has something to do with checking the levels of antibodies in your blood for the immune system.
You can always Google it.

[andrew]

I think a Titer test is a test of concentration/dilution of a given solution, in this case probably urine. I also THINK that the better concentrated your urine is the better the result.

I'm sure I will be corrected if wrong. We need Dr Sangye for this one!

[elephant]

Dear Maestra, I had a Kidney transplant 20 years ago. When you get a kidney from a cadaver or friend/family they check your antigen and the one you receive. They want to see if your a match anitgen ( perfect match is a 6). Since my brother and I are a perfect match I only had to be on one medicine ( cyclosporine), they weaned my off the prednisone. At that time they did not know I had Wegeners disease. I had Wegeners disease for 30 years. They will most likely put you on a couple medicine's for the kidney and WG. The doctor probably want's to know where you are at if your body is in attacking mode. So that is one reason he is checking titers. Mabey Sangye can explain it better. I am sluggish on my medical stuff.

[Sangye]

Hmmm. I'm not familiar with kidney transplant stuff, so I had to look this one up. I'm thinking they might be referring to ABO titers, which (I think) determine blood-type compatibility. Usually you can't get a transplant from someone with an incompatible blood type, but there is some new research about doing ABO-incompatible transplants.

(Your doc might be referring to titers of ANCA, though! More specific than just a (+) or (-). But still pretty useless! )

But never mind all this-- you really need to ask your doc to explain it clearly, in way that you understand it. Take notes and/or bring a digital voice recorder. It's important for you to understand what they're doing. I wish I could help more!

[lafounk2]

Hi,
My son, Josh, will also be needing a kidney transplant. We saw Dr. Merkel at Boston Medical Center last week for a 3-month visit. He believes that Josh is in remission but wants to get Josh's pred down to 5 mg from 15mg and once that has happened, then we'll have to wait 6-12 months in remission before transplant.

Dr. Merkel took Josh off Bactrim for which he's been on since diagnosed in April this year. I'm reading some blogs which say that some people don't have a good time off Bactrim. Should I be concerned? Additionally, he's increased his Myfortic from 540mg to 720mg. Any thoughts?

I am currently sitting with Josh at dialysis for which he does 3x/week for 3 1/2 hrs each time. We cannot wait for transplant. So far, no family matches or family wanting to donate. A co-worker of mine offered to be Josh's donor. Antigen match was 0 out of 6 (unfortunately). Negative crossmatch, however, which is a great sign.

Kelly

[elephant]

Donating a kidney is a tough and personal decision. I know that having a family member who is very close to the antigen match will result in long term kidney survival. I know someone who got a perfect match from a cadaver. She is doing great! My guess is that the doctor upped the cellcept to keep a flare coming and keep him in remission. They use cellcept for kidney transplants. I was on high doses of Prednisone after the transplant then they weaned me off them after 10 years. Hope it all works out. If you have any more questions, I would be happy to answer them.

[Sangye]

They usually put Weggies on Bactrim initially if they're on cytoxan. Ctx makes you very susceptible to a type of pneumonia that only strikes immune-compromised people. The pneumonia is difficult to treat, quite deadly, and prophylactic Bactrim is very good at preventing it. If the only reason for using Bactrim is because of ctx, they usually stop at the end of the ctx treatment.

For awhile they thought all Weggies should stay on Bactrim--that maybe the disease was a type of infection. Unfortunately, it doesn't help a large number of Weggies. People with upper respiratory Wegs involvement tend to do well on Bactrim. It limits sinus infections and may even help keep the actual Wegs under control. I don't have upper respiratory involvement and Bactrim didn't help me at all.

It's hit and miss. The people that it helps swear by it. There's really no way to tell if Josh will do okay off Bactrim unless you try. There's good reason for going off it if he can. It's risky to stay on any antibiotic long-term--particularly for a child-- because the odds of becoming resistant to it are high. He could need Bactrim to treat a future infection.

Increasing Josh's Myfortic while decreasing his pred is a good thing. Pred is much more dangerous to stay on for long periods. He'll have to stay on Myfortic (or a similar immune-suppressant) for life once he has the kidney transplant anyway-- no getting around that.

Josh is in excellent hands with Dr Merkel. I don't think you should worry about a thing.

[Jack]

720mg of Myfortic is a very low dose anyway. It is what I take and most doctors seem to consider it to be half the usual dose.

[Maestra]

Sorry, I ended up sick with strep and then getting ready for the U of MN and the holidays I've just been busy.

They are looking for a concentration with the titers. They wanted to ensure that the WG is in remission. My kidney doc wrote that he believes it to be in remission knowing my history etc. The U just wanted one more test.

Now time for my family to begin being tested. my dad's out as he is blood type A and I'm O. Here's hoping my Mom's an O. She has at least one brother that's an O, so we're optimistic.

Thanks for all your input!
Heather