new member - diagnosed with MPA one year ago

[Dkathleen]

Hello everyone,

I have been reading posts on this forum for about a year and finally decided to join. Initially, I thought I had GPA. I performed the classic internet search, scared the heck out of myself then found this forum. The posts on this site provided me with much needed information and hope.

This is is my first time joining a forum or support group. By doing so, I am coming to terms with my diagnosis of MPA. A kidney biopsy confirmed it. I have positive ANCA too. Luckily, there is no kidney damage.

Background of diagnosis- In October 2013, I started to feel poorly. I thought it was the office cold. Then it felt like the flu. After about a week and two visits to my GP it was confirmed that I did not have the flu. I had back pain, but no cough until the second visit. My GP figured I had back pain from the cough although I pointed out that the pain came before the cough. He sent me home with Vicodin. Luckily, I had a standing appointment with my rheumatologist a couple days later.

I was diagnosed with Scleroderma (CREST) with mild interstitial lung disease about 20 years ago. I am 46. I was not on any medication and only went for check ups every six months. Denial, a bit of luck and stubbornness is how I deal with scleroderma. Not sure it will work for vasculitis too.

My rheumy sent me for a CAT scan of my lungs. My lungs were cloudy. He was thinking lung cancer. They could not get me in for a bronchoscope for a couple days (Monday). My lungs got progressively worse. I started having severe spasms. I used up all the Vicodin from my GP.

They did the bronchoscope and promptly admitted me to the hospital. Vasculitis was not on their list of possible diagnosis for several days. They ran lots of blood tests to rule out infectious diseases, etc. my lung biopsy came back negative for vasculitis. ANCA positive. Positive kidney involvement. After nine days I was able to go home. I was on 80 mg of prednisone and Bactrim. I took a month off from work. I returned to work a year ago on December 1, 2013.

I am in a drug induced remission.

Rituximab - four, once a week treatments. I had an allergic reaction with the first treatment. They gave me Benadryl and Solumedral. All went well.

Imuran- at first all was well then allergic reaction. Pancreas issues.

i am now on 2000 of Cellcept and 2.5 Prednisone. I was completely off Prednisone I for three weeks in August,but crashed hard. Patience is not my virtue. I am learning! I am tapering the Prednisone and hope to be off by the end of the year. No rushing this time around. Exhaustion to the extreme.

My wish is to provide helpful information and hope for others as was done for me in my time of need.

Thank you.

[mishb]

Hi dkathleen and welcome to the forum.
I am so glad that you have finally decided to say HI.
It took me a while too, after I first joined. Wasn't sure that I would have much to contribute - and now you can't shut me up

We do have other members on here with MPA instead of GPA.
Al, who has now passed, also had MPA.

Off pred for three weeks. Good job. That is better than what I can do.
I have been on 3mg since 2013 and can't go any lower.

Thankyou for your offer to help others. It may be needed

Take care

[mrtmeo]

Hi dk,
My mom has MPA too and this is the only forum I could find support.
This is a very good site with tons of help from others experiences and knowledge.
My mom is not in remission, yet and had the 4 infusions of rtx and now, is on Mofetil.
She is losing her kidney function, at 4th stage, and trying to get into remission to stop the attack.

[Dkathleen]

Thank you, Michelle. I'm fairly private about my health issues. This forum helped me deal with pred rage and many other things I thought I could deal with on my own. It also helped me realize that there are many who are able to live relatively normal lives after diagnosis. Some take longer than others. I realize how lucky I am to get through my first episode without major damage.

The three weeks of freedom was not pretty. I thought I was having a relapse.

Take care.

[Dkathleen]

Hi Mrtmeo,

I am sorry that your mom is having such a hard time. I could not find much for MPA support either. From what I've seen, you have done a lot of research to understand this disease. I will keep you both in my thoughts.

[mrtmeo]

Hi Mrtmeo,

I am sorry that your mom is having such a hard time. I could not find much for MPA support either. From what I've seen, you have done a lot of research to understand this disease. I will keep you both in my thoughts.

Thanks DK.
I too, will keep u in my thoughts and am so glad u don't have any organ damage.
Did u have any sinus issues?

[kaysee]

Welcome to the fourm dKathleen. This is a great place to find support and answers. We are glad you finally joined our group.

Karen

[Jaha]

Hi there and welcome to the most amazing group of people you'll ever know. Thank you for sharing your story and for wanting to help others to find understanding of their chronic illnesses. I have found such clarity and compassion from the members here, on so many of the issues that we all have to deal with. Wishing you all the best for staying off the preds.

[annekat]

Welcome, Kathleen, I'm so glad you joined us, and am also glad you've already benefitted from the forum in the time you haven't been posting. I'm glad you have another MPA person to talk to here, Blake and his mom. I get the feeling it may be even rarer than GPA since I don't hear about it as much. Jana, above, is so right about what an amazing group of people this is, which I guess you already knew! I look forward to hearing more from you soon.

[brew22]

Thank you so much for posting your story.. It is lonely to have a disease that no one has ever heard of and no one you know has! I have not done my story yet but not too different then yours..I was diagnosed last June and am now in drug induced remission too but still have some issues with the damage of the disease and the drugs. There are some very positive videos done by the Vasculitis Foundation with Weggies that were helpful to me.. to see that these people went through what I did and are now leading pretty normal lives! Keep in touch Susie
I also learned so much about this disease from this video that was posted in this forum and others from the same event by the Vasculitis Foundation

https://www.youtube.com/watch?v=LIBU...UUW5XLXdoFSX-q