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Thread: Me too - New GPA diagnosis. High Anca titer

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    Quote Originally Posted by Gab122 View Post
    Hi Don,
    I'll try to be patient.
    Btw- you said "exercise such as what Pete recommends works well...just gotta do it.". I reread Petes post and he didn't mention exercise. Shd I be exercising? I thought working out would be more draining than helpful. Maybe you meant an 'exercise' in patience? Gab
    Depends upon how ill you are now. Some times getting out of bed is more exercise than we can handle. Ask your physicians what you can do safely and what you should be doing? Try to preserve what ever function you can as it aids in your recovery.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Gab - I am north of Boston on the coast and have family in southern NH.

    I started with IV Solumedrol and went to 80mg Prednisone along with 4 Rituxin Treatments. Titrated down to 5 mg Prednisone slowly over about 8 months but am at 10mg now since CRP started to creep up, also on Methotrexate 15mg weekly. My PR3 and CANCA have been negative since about February and I so hope they stay negative and my CRP creeps back down,

    I had some complications due to a mishap during a lung biopsy so was on home O2 for awhile but fought back and was able to return to work ( on a reduced schedule) within 3 months. I did walk my treadmill to build up my endurance slowly and that was a good plan since walking outdoors in the winter did not make sense - hard to lug the oxygen at that point. I started to feel better other than fatigue within a month of completing Rituxin doses but like I mentioned most of my issues were related to lung mishap and everyone is different and some folks feel better sooner. I do tire more easily still and have various aches and pains (but had those for years and relate to wear and tear on the body over the years) but otherwise back to working full time and just keep on keeping on as much as I can. I try to be vigilant with waching symptoms and keep in touch with my docs. Think a lot of issues can be related to medications for me - necessary at this point but would so love to be off some of them - esp prednisone.

    The lesions in my lungs started to improve after the first 2 Rituxin treatments, my vision also improved quickly. Hearing did not since it had been 3 years, if they caught it earlier the outcome might have been different - hopefully you have reason to be optimistic with your hearing since you started treatment so quickly

    The optholmologist I saw at MEEI was not very helpful and actually knew little about GPA - I understood I would be seeing someone who was well versed and will not go back to him. The RA I saw at MGH was great and confirmed that the care I am receiving is on target. I will continua to follow up with him along with my RA who helped make my diagnosis. I had also gone to MEEI when I lost my hearing 3 years ago for a second opinion and mentioned that all my inflammatory markers were up and he never made a connection with GPA or suggested testing with a CANCA

    I had so many of the same questions that you have when this all started and the folks on the forum have been so helpful, kind and supportive - it stinks to have this disease but is comforting to know you are truly not in it alone. Best wishes and take care
    Last edited by Middlesista; 08-11-2016 at 11:23 AM.

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    LOL...sorry Gab...my bad...Pete has a thread on exercise & I had just read it again. But, mild exercise such as walking, stretching, swimming, & low impact stuff will help your condition & attitude. Makes one feel better & feel useful too. Once the effects such as lethargy, pain, etc. start to go away, exercise becomes more palatable...you'll get there..honest! Take care & keep at it!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome, Gab! Everyone has pretty much said it all, but just wanted to add that I'm another one who started with a giant, antibiotic-resistant ear infection and was ultimately, after 2.5 years, diagnosed with W in my sinuses and lungs. You are very lucky to get such an early dx and treatment, and to live in an area with such good doctors. I did lose most of my hearing; one ear got better but still needs a hearing aid. The other got even better and then went downhill due to a recurring infection and erosion of the ear drum and tiny bones behind it, and now can't even hear well enough to use the aid that once worked fine for it. But with your early dx, it is much more likely that your hearing will return. My lungs did clear up pretty fast with treatment, though there is still some scarring and reduced lung capacity. The bony structures of my sinuses and nasal cavity have been largely eroded away, and the worst result from this is a collapsed nasal bridge (saddle nose), which my glasses hide pretty well. My vision and sense have balance have been affected by all this, too, but I'm still in much better shape than some people. Again, your relatively early dx and treatment by great specialists will likely mean you can avoid most of the permanent damage that I've sustained. Best wishes, and keep us posted!
    Anne, dx'ed April 2011

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    Thank you Drz - Can you tell me how your scores responded to treatment? Can you tell me more about your GPA journey and how you are now? Did you find that the high anca scores played a role in your treatment in anyway? Thanks Gab
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Thank you AnneKat! It is really helpful to me to hear other's stories like you shared in yours! Thank you!!!! It's like I want to hear more so I can get a glimpse at what the 'typical' scenario might be (if there is one)... esp for people similar to me. thanks!
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Middlesista, Thank you for sharing your journey, It really is helpful to me! I'm sorry you went to MEEI and mentioned your inflammation markers 3 years ago and no one did anything! That's crazy! The Dr. I saw at MEEI was deVenicia - he seemed to know a lot about GPA. He is an Ear doc though.. Not eye dr. so I'm guessing it's not the same guy you saw. He does think my hearing will come back but I've heard from a few drs that it will probably be last to be restored. I can still hear - lost about 30% though.
    Great news about your PR3 and C-anca scores! Hopefully CRP comes down too! So were you diagnosed with GPA 8 months ago? I was trying to figure it out from your post. I wish you the best and a full recovery someday!
    Trust in the Lord with all your heart
    and lean not on your own understanding;
    in all your ways submit to him,
    and he will make your paths straight.
    Proverbs 3: 5-6

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    Quote Originally Posted by Gab122 View Post
    Thank you Drz - Can you tell me how your scores responded to treatment? Can you tell me more about your GPA journey and how you are now? Did you find that the high anca scores played a role in your treatment in anyway? Thanks Gab
    My ANCa scores are generally in negative range when I am considered in good drug induced remission. Some times they increase to mild or borderline range when my residual symptoms like joint pain, nasal bleeding are present. This usually happens when I have infected sinuses or bronchitis or other infections.

    I have several threads that tell about my history with Wegs that you can find with a search.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by Gab122 View Post
    Thank you AnneKat! It is really helpful to me to hear other's stories like you shared in yours! Thank you!!!! It's like I want to hear more so I can get a glimpse at what the 'typical' scenario might be (if there is one)... esp for people similar to me. thanks!
    Also, forgot to tell you, my ANCA titer was really low, so low that my doc dismissed the possibility of my having WG/GPA, obviously not a specialist, since it's a known fact that ANCA is not a reliable indicator and some of us actually test negative for it. But your number was really high! Just another example of how every case is a little different.
    Anne, dx'ed April 2011

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    Welcome to the family, Gabrielle.

    It sounds like you are in good hands and getting the right and best treatment possible. For some of us rtx works fast. For others it takes more time. But it works great anyway. 60mg pred sounds enough unless you are a very big lady.

    Sweats can be wg symptom. C-anca of 1100 is indeed the highest I ever heard about.

    Hang in there. The beginning is tough. It should get better. Sending prayers.........
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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