ANCA negative now!

[PattyMPA]

After just two Rituxan infusions, two weeks apart, my ANCA has gone to negative. It was 1:128 since the first testing January 12 (and my diagnosis of MPA was on January 19), then in early May it went to 1:64 after treatment for a life-threatening attack on my lungs that put me in the hospital 8 days. Now, the medicine (or do I credit the Prednisone?) is helping me to the point of a negative ANCA. And no MPO to report, so that is great.

[cpierce1016]

Hi Patty,

Glad to hear you are doing well. I was diagnosed with Vasculitis GPA in March 2017 at the age of 50 and it destroyed my kidneys. I am currently doing in home dialysis. I am on the transplant list and have a pretty promising living donor in the testing process right now. Best wishes to you!

[PattyMPA in reply to cpierce1016]

And to you as well. So sorry to hear GPA hit you that hard. Praying for your transplant to go well.

[Christophene47]

Dear Patti,

Congratulations! There is not much good news on this website, but thank you for giving us this great hope! ; you must be on Cloud 9. In your own mind , do you credit the prednisone or the Rituxan? Or the combination?

I must assume you feel pretty good; will you be maintained on Prednisone to prevent relapse? What had been your dose of Prednisone?

I am tempted to come to England and see your treating physicians as a private pay pt.

How was your original MPA diagnosed? And how long did it take from your diagnosis to now?

So happy for you.

I have C- ANCA antibodies, but my symptoms are much more consistent with PMR/GCA, ( no obvious lung or kidney problems) but CRP and SED rate normal. So it is a puzzle. Just saw a new rheumatologist this week; he asked me if he could keep my huge file of records and he will pick out what he needs and have them copied. He intends to study them. I was impressed by that.

The prior office put me on Methotrexate. A hematologist and this new rheumatologist are not happy with that (and they don't know each other); the new rheumatologist thinks it could be making me sicker.

After he has all new bloods, I think he has in mind to increase Prednisone and stop Methotrexate. I am going to stop it this upcoming Monday (once weekly) ; I see him June 27. 0000

Again, all the best; we all need hope.

[PattyMPA in reply to Christophene47]

Hi, sorry for this late reply. I was hit hard suddenly in December 2017, and fortunately have a great Rheumatologist who (after several ER and hospital visits) knew to test for this ANCA Associated Vasculitis among other things. So, I was able to get her a nomination for the Vasculitis Foundation Early Detection Award. Anyway, January 19th test results confirmed this MPA, although here in the States, they want to see a biopsy for full confirmation. Started then on 40 mg Pred, which tapered every 2 weeks down to 10 (in mid April), but added Methotrexate early February at 15 mg, then 20 sub cutaneously (injected). However, mid April I was hospitalized for life threatening lung attack by the MPA. Almost died - 8 days in the hospital, but when they finally started steroids I cleared up. So, after that the doc put me on 60 Pred, tapered down and now at 17.5, heading to 10 in a bit, then a very slow taper down. But, the reason for doing that is that I started Rituxan infusions in mid-May - 2 two weeks apart, then again in 6 months. So, we are hoping that helps me achieve remission. Many bad side effects from either one of the drugs, not sure what - but I do have energy now. Edema, slight tremor, cramping in legs and feet and hands, very bad upper leg pain both sides.

[Christophene47 in reply to PattyMPA]

I never realized you were in the States. Who is this wonderful rheumatologist you found? I can deal with pain if I have energy, which I don't.

I had a few over the top good days( why I don't know); but down under again.. found a new rheumatologist who I think is better than the first one; but not sure yet.

If you can recommend her, please do. Great news to hear you are ANCA negative now, but sorry you still have pain. You still must be happy. In 3 months, it will be 2 years since symptoms began; I know PMR/GCA can last at least that long; I am lucky to have a husband 11 years younger than myself; we married in 1/17, but had known each other over 7 years. He is French, and has no problem learning how to do things here, but at age 60, hé is not likely to learn English ; his talents are mechanical, not linguistic.

To be sure, before the marriage, I explained the disease to him in a Google translation, especially the fatigue part. He didn't care. He has taken over just about everything in the house and is truly devoted. I speak and understand French proficiently for activities of daily living, but I feel I am letting him down by not having enough energy to go anywhere or do anything; he has never complained.

But I still feel guilty; we live in S. Jersey across the Delaware River from Philadelphia. He has his US green card. We have to go to NYC soon to renew his French passport at the French consulate, and I worry I will not have the energy, but I must get it from somewhere.??

Sorry for the complaining...very happy for you- to get where you are, gives me some hope.

[PattyMPA in reply to Christophene47]

She is Ina Rose Oppliger, but is semi-retired with Kaiser Permanente, so I can only occasionally see her. She teaches Rheumatology at the University of Washington in Seattle. I understand they are developing a Vasculitis Center, but I don't expect to see it open for a few years, just guessing. This leg pain is getting worse as my Prednisone is going down. Interesting correlation. Physical Therapy cannot help me, so the PT tells me (who is highly respected), so on to Ortho and Neurology in a week and ten days.