Had my second opinion

[godgirl]

Not at Mayo, but jumping through some hoops for insurance. The doc I saw is in the same office as my other one. As a bit of history, I saw my regular rheumy in Dec. I got done telling her that I was still really fatigued, my hearing fluctuated, eyes and face hurt, etc. She told me I was asymptomatic and that I should again try to taper the prednisone. I was pretty frustrated.

I'm hopeful that maybe I'm on the right track. This doc came highly recommended. He was pretty cool, and very knowledgeable! He walked in with a handwritten sheet of paper - notes he had taken from my chart and wanted to discuss. That in itself impressed me. I didn't have to start over at the beginning and go through everything.

He also didn't discount all my "symptoms". I put that in quotes because the other one didn't think they were considered symptoms last time I was in... So we went over everything, got to the end and he says, "I can't definitely call this Wegeners, however, whatever this is, we need to be a bit more agressive". In particular, he was really concerned about the sight damage I've sustained. So, still no diagnosis.

He did up me to 25mg of methotrexate (I was at 20mg oral) - and put me on the injections. I started that on Sunday night. Wigs me out a bit, but I'll get used to it. He also took a TON of blood for bloodwork.

I just got a note from him and the test results. Funny, everything isn't in my head! I am SO relieved!!! Here's part of what he said:

"The recent tests revealed a still borderline or equivocally abnormal MPOantibody of 0.7 (the equivocal range is 0.4-0.9) and the p-ANCA was stillpositive or abnormal. The inflammatory marker C-reactive protein was elevatedat 22 (normal range <=5.0), which may very well reflect ongoing diseaseactivity."

It's interesting that the MPO hasn't gone down much (I was at 0.9 when this first started) and that the p-ANCA is still there. As for the C-reactive protien? Yeah, I've never had one done. And he and I think I should have. So...

He's going to see how the higher methotrexate (injections) work for me and if I start feeling better. He's also stopping the prednisone taper, but doesn't want to raise it unless I start feeling worse. I always have issues when I go down from 10mg. I'm at 8, but struggling. We'll see if the methotrexate helps.

I'm giving it the 3 months he's asked for, then we'll talk about Mayo Clinic. (This doc did his residency there - and knows a lot of the staff in rheumatology.)

I'm just SO relieved that I'm being taken seriously. And that all this stuff isn't in my head.

Thanks for "listening". Jen

[Alias]

Well, that sounds like progress. I agree it's reassuring to know that a doctor has read the chart BEFORE he sees you. Seems like the least we should expect, but it doesn't always happen. You'll get used to the MTX injections in no time. For what it's worth, my rheumatologist thinks the injections are more effective than the pills, and I've responded well to them. It's good that there is a plan in place to get another eval if you don't improve fairly soon. Hang in there!

[mishb]

Jen, it sounds like you are now on the right track.

It's amazing what a second opinion can do sometimes.

I hope the MTX starts to work and you start feeling better

[kaysee]

Great news Jen. I hope you begin to improve now that you have a Dr who takes you seriously.

[MikeG-2012]

Great news Jen! Glad you had a positive experience. It's amazing how it changes your whole outlook when someone actually cares and listens!!

[mrtmeo]

Hi Jen,
That is really good news!
If you are P-ANCA pos against MPO, are you also, C-ANCA against PR3?
Were you given a dx of Wegener's or MPA(Microscopic Polyangiitis)?

[godgirl]

I am just so relieved, everyone. Whew!

Mrtmeo, my c-ANCA is negative. My regular rheumatologist said that it could be MPA, but I've been undiagnosed since all this began in Nov 2013. Since I've been on methotrexate and prednisone since then, I was surprised (and I think he was too) that the MPO and p-ANCA was still where it had been. Question, what does c-ANCA against PR3 mean? I see it on here, but I'm not sure what it is.

My regular rheumy also used Wegeners, PAN, MPA, etc. interchangeably. She said it was because they were all in the same family. I'm not sure how accurate that is, but... Don't get me wrong, I really like her. I just don't think she was looking at everything or being as thorough as she could have been. I've been frustrated. Could be that I have NO patience for my own health.

Again, no dx. The p-ANCA and MPO indicate something is going on, and it's probably Wegener's, MPA or something. All my docs talk about Cogan's Syndrome as well. Neither of my rheumatologists has seen a Cogan's patient before. My ENT has dx'ed two of them. It's rare, but pretty much treated the same way.

Next step is another hearing test early next month and meeting with my ENT. We'll see if any more hearing damage has been done. It went down considerably when I first noticed it, but since then, it's been diminishing slowly - so slowly, I don't usually notice it. Every time I go to any of them, they look in my ears and say, "they look healthier than any I've seen in weeks!" But my hearing is gradually diminishing. They think it's inflammation of the 8th cranial nerve. Hopefully, the higher methotrexate will help that, too. My eyes are "quiet", thank God, and so far, no lung or kidney stuff going on... Just a laugh for you all, my family has nicknamed me "Helen". Hahahahaha!

Jen

[mrtmeo]

Hi Jen,
P-anca goes with antibodies against MPO as microscopic polyangiitis.
This is what my mom has.
C-anca goes with antibodies against PR3 as wegener's granulomatosis aka granulomatosis with polyangiitis.
They usually treat these 2 diseases the same, but they really are not the same.
The real difference is that weg's has granulomas and MPA doesn't.

I found this out when the rituxan didn't do much for her disease, but it sure works well for most weg's folks.
I heard from others with MPA having success using cyclophosphamide, Imuran and mofetil, but haven't found one that had success with rituxan.
My mom has had hearing issues on and off and many ENT visits were inconclusive prior to dx.
It's most likely inflammation.
The one thing that rtx really helped with my mom is that she had a high rheumatoid factor which came down dramatically which stopped the keratitis.
Also, she had a one weeks dose of ctx and had the best improvement in her kidneys from that, but I wished we would have opted for the ctx instead of the rtx.