New in New Jersey

[MaxD]

After 6 months of recurrent ear infections (finally stabilized with one month Prednisone), followed by Bell's palsy (another month of Prednisone), I developed what felt like yet another sinus infection, but with a very tender nose bridge, and swollen painful joints that moved around (first right ankle, then left knee, right elbow, left ankle, right knee). Following a blood test that tested negative for Lyme but high for other factors I saw a rheumatologist who suspected GPA right away. Blood tests were consistent with GPA (I don't have the numbers with me), chest X-ray was clear, but CT scan showed nodules consistent with GPA. Fortunately no protein in the urine, and pulmonologist says my lung functions are very good. My rheumatologist is strongly convinced it is GPA and feels that a biopsy may not be necessary (I hate the thought of a lung biopsy and the risks that it entails). I'm back on Prednisone, and the pains are gone and energy levels back up. The recommended treatment is 4 weeks of Rituxan.

I have an appointment for a second opinion with a vasculitis expert in NYC.

I welcome any first-hand experience or opinions on GPA treatment in the absence of a tissue biopsy.

[Dirty Don]

Welcome MaxD, your plight sounds familiar...sheesh. Glad you found us and can contribute. All the symptoms are very familiar for me as my dx is similar to yours...WG Lite as it were. I'm not sure rtx should be next for you...your case doesn't sound that severe (read others on here for details of their experiences) so there are other drugs available for levels of WG as they appear. Rtx is usually used for more severe ongoing cases as it is the 'last step' right now in the drug phase of this disease. I've been on mtx for 2+ years and have done well on it. Pred has been to 0 once, now not far from it again! LOL! As for another source of dx, the lungs are the best source right now. Some are luckier and a nasal sample can be taken, but WG has to be actively present...the lungs are just more likely to be able to supply a good and definitive sample. Some people on here have gone ahead with treatment despite not having a for sure dx. Make sure you ask lots of questions, both of your docs and the blog here. And, your docs should have some WG experience or at least consulting with someone who does...it's about you, not them! Someone is almost always on 24/7. Best to you!

[Pete]

Welcome to the club, Max. Sorry you had to find us.

It sounds like your treatment regimen follows current protocols. Is your rheumy a GPA/Wegs/Vasculitis specialist, or is he consulting with one? This will help ensure you get proper treatment.

There are many threads on this forum that you can research to learn more.

Also, if you want to vent, ask questions, give support to others, there's someone on here 24/7. There are members from all over the world on here.

Good luck and better health!

[renidrag]

Biopsy seems to be the "go to" for diagnosis however I guess it can be done with other methods. Most treatment is Prednisone, Rituximab ( I thought) Bactrim and Ameprozole along with other stuff. Your treatment sounds okay, Cytoxin being the heavy hitter from what I know. All drugs come with the "risk / reward" factor so make sure to ask about any and all side effects and you should take someone with you. Philly has a very good Vasculitis Hospital also. Who are you going to see in New York.
Dale

[MaxD]

Dirty Don, Pete, Dale - thanks for the quick responses and wishes. I'm going through the forums and am impressed by the wealth (alas) of experience and camaraderie, and look forward to contributing as well. I'm scheduled to see Dr. Robert Spiera in New York (Hospital for Special Surgery) next week. Let's see what he says regarding the necessity of a biopsy. I'm really happy with my rheumatologist, it's my first experience having one doctor take care of all of me, and she's coordinating care with various specialists. Gives me confidence that things will not fall through the cracks between piece-part specialists.

[renidrag]

Sounds Good Max, good luck and let us know.
Dale

[NikkiNicole]

Your case sounds a lot like mine.

Welcome!!

I was diagnosed with Cancer during the search for GPA evidence so I had multiple biopsies. Apparently, my lung biopsy was consistent with GPA but ... they were looking for cancer so they didn't mention it.


UGH!

I've been on MTX since August, I've done well. I'm off prednisone for now.

Hang in there! While risky, I had an AMAZING doctor who did my lung biopsy, it was completely painless and an easy process. I was watched for a bit at the hospital and then babysat at home and it was all good. Believe me, after having a bone marrow biopsy the month before ... my lung biopsy was a PIECE of CAKE!!!

[KimH]

Hi Max, your symptoms sound exactly like mine. I see the ENT Weg specialist in NYC, Dr Lebovics. My rhuemy in CT has been consulting with Dr Lebovics but if my Dr up here gets off track I will go see Dr Spiera. I have heard wonderful things about him. His name is on a great deal of the research. Let me know how you like the Dr.. Good luck and feel well. Kim

[darl-p]

Welcome Max,

I have been on this journey for more than 7 years and have yet to see a rheumatologist since mine settled in my kidneys. It has affected my lungs but the CT shows only old scarring and a small nodule.

In a recent discussion with my pulmonologist found it surprising that I had not seen a rhemy in the whole time.
I started off with prednisone and cytoxin and followed that for 18 months then moved to small dose of prednisone and imuran. I asked about switching to Rituxan and was told that it did not have the history that imuran has and is harder on the system. I have surpassed the recommended life time dose of imuran but they hesitate to change from what works.

My lead is a nephrololigst.Confidence in your medical team, regardless of their specialty, and your own research will help you out a lot. Good luck

[mishb]

Hey Max, welcome to the place that no-one knows about except for when it's too late
I'm sorry that you have to be here but I'm glad you found it.

Don't we just love that little white pill named pred. For most part it makes the pain bearable or, for some, non existent.
I'm glad it is working for you.

Good luck with your appointment with Dr Spiera