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Thread: New Member ~ Phoenix, Az

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    Default New Member ~ Phoenix, Az

    Hello friends,

    My name is Michelle from Phoenix, AZ. I have been on the whirlwind Wegener's adventure that started in January 2018 when I was 46 years old. I was diagnosed very early thanks to an amazing ENT doctor. Up until 2018 I had been living a fairly healthy life and had never had any diseases or daily prescribed medications.

    Mine started with what seemed to be a major sinus infection that would not clear up with 3 rounds of different antibiotics. Right away, I knew I had never experienced anything like this and that something was just plain wrong! I had headaches, bloody nasal crusting, nosebleeds, facial pain and my teeth hurt so badly I thought they were just going to fall right out. I could not eat because it was really hard to eat and breath out my mouth at same time and I initially lost weight.

    When I landed at my ENT he saw that I had a deviated septum and had restrictive air flow in my left nasal cavity. Many people have and live with this condition so my thought at that time was do I want to undergo surgery to fix the deviated septum or learn to live with it. However, something still did not seem right and I pushed for more testing (is this Valley Fever ~ common to Arizonans, do I have a fungus, why won't it just go away???). Initial testing for a fungus or some other bacterial infection all came back negative but I then got a call that my ENT doctor wanted me to go for one more test and I was game! I just wanted answers and honestly to feel better and normal again. I was a busy mom with a +full time job and did not have time for this! ha!!!

    In March 2018 the test came back positive for the Proteinase-3 Antibody and my ENT said I next need to move on to a Rheumatologist and did so. By end of March was on my treatment plan of Methotrexate, Prednisone and Folic Acid with overall good results; which I still continue to this day. My doctor said I am so blessed to have an early diagnosis and based on all the reading I have done, I agree! I am so thankful and at this time mine has stayed isolated to just my upper respiratory system and not progressed to lungs or kidneys. There has been CT Scans, MRI's, Pulmonologist & Ophthalmologist visits and monitoring but I overall seem to have this under control with my current treatment. I also did get basal cell skin cancer and had MOHS surgery after my diagnosis too, of which I understand Wegeners patients can be at greater risk for skin conditions or skin cancer too. This also could be because I am an Arizona native with high sun exposure (without protection in my youth).

    During COVID-19 I have been super cautious and work-from-home (thankfully) and I avoid going out in public (hubbie does all the grocery shopping
    For all the years I have had Wegner's I have had varying degrees of my bloods labs being out of wack, so I know I need to be very cautious and do not need to catch COVID-19 to top anything off. I also want to see what I can do for this on my own too and have taken on a healthier life style with my eating and exercise management and have lost 45lbs since I began in February. I hope this will lead to some positive long-term results for Wegeners too!

    My current symptoms are this summer my joints (fingers, knees and hips) have started to be impacted for the first time. I still have nasal pain and teeth pain
    from time to time and nasal crusting but no nosebleeds in one solid year. My eyes and ears are starting to become a little bothersome too; all of which I watch and discuss regularly with my many specialists. The hair loss from the Methotrexate just causes me to have really thin hair now and this comes and goes. I do also take over-the-counter- Biotin which helps at times. But it's a little unnerving to have hair just plopping out while sitting and I wonder HOW much more hair will I lose. While I know my Wegener's is not an extreme case and I am so heartfelt sorry to those with it much worse than me, it still has been a completely life changing event to adjust to.

    My game plan for 2021 and what led me to this forum is that I honestly want to be off the medicines! At this point, I am not on any high doses (17mg Methrotrexate once per week, and 5mg Prednisone daily) but I don't want to be on them for the rest of my life. We have not gotten to a point yet where I have been called in 'remission' or 'inactive' and still remain in treatment that the Rheum doctor thought would be about two years and I am now past that initial time frame. I really am unable to go below 5mg Prednisone or the symptoms become strong but I know my Ophthalmologist and Dermatologist want me off it every time I have a visit. Once I can get off Prednisone and can be symptom free is when the Rheum doctor said they would next start weaning me off Methotrexate ~ but we have not gotten there just yet.

    All of my doctors and specialists say that Wegener's is rare and they do not often see patients with it in their career or very few and I feel frustration because I want a better treatment plan that does not involve indefinitely taking medicines ~ they all have other negative consequences in their own right. After reading your post's I may find that the medication is part of my new life and maybe I am being unrealistic in this desire?

    As I just completed my health care open enrollment and we have a new covered benefit of "2nd.MD Expert Medical Opinion"; I am hoping to get to a specialist/Rheumatologist outside of Arizona. Months back I think someone posted about a Wegener's specialist at The Cleveland Clinic! So I will definitely be reading through old your posts to find some names and hopefully get connected with another opinion on my future and perhaps a better or alternative treatment plan than I am on now.

    In advance, thank you so much for the information and sharing that you have all posted and that will be my new hobby to get caught up on everything! I am coming here late but so happy to be here with you all now!

    Peace and Blessings,
    Michelle

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    Default Re: New Member ~ Phoenix, Az

    Hey Michelle, welcome and thank you for the great intro!
    You certainly got it early but I'm sorry it's still mucking you about. Pred is a difficult thing - both a blessing and a curse and can take some time to eliminate from the pill-popping regime. Definitely from here looks like you're on the borderline with that dose. I hope you can taper down at some point soon. Yours started the same as mine with the Sinus and the faceaches. Outstanding job losing all that weight while on the Pred. Nailed it!

    There will surely be someone here that has information on specialists at the CC. From what I can see it's quite a popular place in our exclusive club.

    Thanks again for the great intro
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: New Member ~ Phoenix, Az

    @ShellLeighScott

    Actually, you’re in better luck regards finding a local GPA specialist. Mayo Clinic has a facility in Phoenix that @Dirty Don goes to. He’s doing pretty well, and I hope he’ll chime in soon.

    I see Dr Alexandra VillaForte at Cleveland Clinic. She’s wonderful. I’ve been under her care since 2012. I now lead a lifestyle similar to what I had pre-GPA adjusted for age (I’m 74.). I’ve been off prednisone since June 2018. It took 9 months to taper from 5 mg/day. I get an annual dose of 1000 mg of rituximab each year that keeps the disease at bay.

    I hope you can get more effective treatment soon, but caution about hurrying to get off all meds. Let us know how you do.
    Last edited by Pete; 10-13-2020 at 11:33 PM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New Member ~ Phoenix, Az

    Welcome Michelle...I'm chiming in as Pete suggested! LOL I go to Mayo Clinic in PHX & the clinic on Shea Blvd. & live in Surprise, so it's a bit of a drive but well worth it. Short story: I started as you have on MTX w/ folic acid. BTW, try tripling the folic acid and your hair problem will go away...mine came back in curly...what?!?! I see Dr. Mertz, head of Rheumatology, and his PA, Tammy. I am currently on a 2 month 'leash' as my numbers have crept up recently. I don't expect to get off the drugs any time soon, but life is good on them, so onward!!! They are on call 24/7, drugs (usually prednisone) are in my hands in less than 24 hours, and they're just great people too! Getting in is a bit difficult. If you're interested, call them (call direct to Rheumatology as they will send to Appointments otherwise), as often as you can to get in...my initial appt was in 3 mos.; got in in 3 weeks by calling them every day...they encourage it. Am now on Rituxin after last flare...took 9 years for next flare to occur.

    Your case seems pretty typical...I know, that's not nice...you've got good starter protocols...now for the ride...hold on. Keep up your protocols, keep a good attitude as this can be fought successfully if not finally yet, and keep on keeping on, both as a mom and the strongest person you can be! Wow! Did I say that?!?!? Best to you Michelle!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Default Re: New Member ~ Phoenix, Az

    Hello Don ~ Thank you so much for the name of your doctors at Mayo! And I am certainly up for the challenge and persistence of getting in to see the specialists as I learned very early on! And right on it, I will bump up my folic acid again!

    So happy to be here with you all and look forward to all the sharing and information of this forum and posts.

    Most kindly,
    Michelle
    Last edited by ShellLeighScott; 10-15-2020 at 10:56 AM.

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    Default Re: New Member ~ Phoenix, Az

    45 pound weight loss on Pred is incredible. I did the opposite: I gained 45 pounds. I want to take it off, but obviously not enough to put in the work. Hearing it is possible is enough to push me towards being motivated. I just got to get up early and put in the reps. I recently upgraded my phone and it tracks my screen time, and seeing how much time I spend staring at that zombie inducer lets me know I have more than enough time to work out.

    I know the meds are frustrating, but I caution you from going off the meds too early. You have a manageable case and that is as good as can be asked for with this disease (1 in 10 never find remission, that sounds low but is an astronomical number to be honest). I was lucky to be caught early as well, but due to my significant lung involvement my rheumatologist opted for Rituximab over methotrexate alone (my pulmonologist has off the record told me he would have went with methotrexate but that is only because his philosophy is to only whip out the big guns when absolutely necessary, whereas my rheumatologist went with the aggressive solution, one which I actually preferred after feeling so bad).

    Best of luck to you: take care of those kids (they are lucky to have someone as strong as you)!!

    This is a good place. My travels of the interwebs have shown this is the best GPA community in the universe.
    Last edited by richard052018; 10-15-2020 at 12:35 PM.

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    Default Re: New Member ~ Phoenix, Az

    haha Richard! I do feel the weight gain piece of this too; I gained 25lbs early on from prednisone.

    Thank you so much for the feedback of the meds being a frustrating part of this. It's hard to accept I may be on them for quite some time, but at least you all here are confirming for me that it is very normal part of it in helping me to manage this.

    My best to ya!
    Kind Regards,
    Michelle

    No act of kindness, no matter how small, is ever wasted.
    Aesop

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    Default Re: New Member ~ Phoenix, Az

    Hi Michelle,

    your story and mine sound a bit similar, sounds like you were able to get on top of it early on, which is great news for preventing further flare ups. You’ll definitely welcome the specialists you have, hopefully you can “fire” some of them as you get better, I’ve managed to get rid of my pulmonologist and renal specialist this year, but I still send them Christmas cards. Definitely watch for skin moles and lesions and stay in the shade, a depressed immune system has a lot more trouble clearing up troublesome melanoma cells before they start going haywire (trust me, I live in sub tropical Queensland, we have extreme UV three hundred days a year, and I’m Scottish descent).

    it’s a cliche that a positive attitude can make a difference, but it is true, and it’s sounds like you’ve got your mental facilities working properly. Don’t start dwelling on this mean little troll which doesn’t even deserve a name, just make sure you follow your treatment regimen and stay in top of your meds and labs, and live it up best you can. If you have any questions, fears, advice, whatever you need, the forums here, use it.

    And you LOST forty five pounds?! On Prednisone?! What’s the dosage, a quick glance at the label? I have trouble maintaining healthy weight on 5mg Panafcort, are you some sort of legend or something?

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    Default Re: New Member ~ Phoenix, Az

    Nice to meet you Peter! Thank you for your advice and encouragement. I hope you are well at this time!

    I am on just 5mg of Prednisone currently! So weight loss is possible. My ravenous hunger was when I was on a higher dose but still yet I did gain weight that stuck. My Rheum doctor said "you don't have to gain weight on prednisone but you have to stay ahead of it". Well, I wish I had known that ahead of time but I just wanted to get better as my main focus during the onset and painful symptoms!

    My bloods labs just came in for November and my WBC is at it's best in years! I am happy and hope maybe my weight loss is going to bring me better overall health that may positively impact this disease too!

    I hope everyone is doing well, and staying healthy with COVID on the rise again!

    I will see you back when I hit 50lbs! I hope it is coming soon...

    My very best,
    Michelle
    Kind Regards,
    Michelle

    No act of kindness, no matter how small, is ever wasted.
    Aesop

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    Default Re: New Member ~ Phoenix, Az

    Hiya Michelle,

    sounds like things are going ok for you, and healthy eating and exercise is good no matter what. I actually took up jogging a year ago, although for me its more like a Zombie walk - shuffling, stumbling, pale, lots of weird moaning. Just remember what I said about the skin protection, living in Australia we really get bombarded with the skin cancer message, and it is more serious with compromised immunity.

    let me know when you hit that 50 pounds, and tell everyone else its doable. Weight gain on the pred is an ongoing issue for a lot of Wegs patients, but if you can beat it, rub it in! Shame us into following your lead!

    Later dude.

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