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 :thumbup::thumbsup:
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.
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!
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
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.
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!
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?
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
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 it’s 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 it’s 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.