Hi , I read that a medical bracelet stating I'm on prednisone is a good idea. Can any one give me more specifics about what info the bracelet should include? Should it list other medications?
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Hi , I read that a medical bracelet stating I'm on prednisone is a good idea. Can any one give me more specifics about what info the bracelet should include? Should it list other medications?
I would ask your doctor about this. I have some ID's that say diabetes but I don't even use them so i would be a poor source for such recommendation.Quote:
Originally Posted by Gab122
A medical bracelet, should you choose to use one, should contain as much information as you can fit on it.
For example - imagine yourself alone in a new City and you collapsed on the street. Someone calls emergency and they find your medical bracelet.
You really don't want your bracelet to say GPA or prednisone because they wont know what else. Therefore it should contain your name, your medical
condition/s and any medications you are currently taking.
I have a medical bracelet but don't use it at home. Really have no idea why I don't use it, except that I'm not into jewellery and don't wear any (not even my wedding rings)
I did, however, wear the bracelet when I went overseas. I figured that this is when it would really come in handy.
I wear one all the time, but its for the "no pit" situation vs. wegeners. I hadn't thought about wearing one for wegs.
I would have to agree with Michelle... wear one if it makes you feel more comfortable. The only reason you might want to wear one if you were on pred is because your adrenal gland tends to shut down and not produce cortisol as long as you are getting enough from the pred. If the pred is abruptly stopped, your adrenal can't turn back on fast enough to provide you with cortisol and you risk going into an adrenal crisis. I've had two adrenal crisis and they aren't particularly fun. As, Michelle said, ask your doctor.
BTW, Gab, welcome to the forum.... :-)
Thx Vdub! I read your story.... Wow you've been through a lot these last 6 years! Sorry to hear it. 😟
I have my first follow up with MGH rheum dr's on the 17th. I've been reading a ton as you can imagine and am beginning to wonder if this disease will impact my life expectancy. I'm 49. I guess I thought that with no kidney damage/involvement I'd just retreat any relapses right away and live another 50 years. Now I understand kidneys often become involved down the road. And that infection due to meds can be a life-risk too. Wondering if I've over simplified my version of what this will look like.
I also don't understand how I can have relatively mild problems, not in my kidneys and such high levels of Anca. What does that say about my future? Did I just get dx very quickly but have an aggressive disease that was just about to ramp up? Does catching it quickly put me on an even playing field with lower Anca patients? My guess is there are no definative answers.
I guess this is where I have to trust dr's and lean more heavily on my faith in Gods perfect plan. (Whatever that is) It's all Kinda scary today. I have a 12 year old daughter....
Thx for putting your story out there.
Gab
Ah, don't give up on your life and don't believe all the life expectancy stuff you read on the internet. Generally speaking, Wegs and many of the other AI diseases are well controlled with today's medicine. You will likely have to make some adjustments, but should, otherwise, live a long life with few problems.
Here's hoping I'm a 90 year old great-Grammy someday :) 🙋🏻
After my diagnosis a friend told me that he read the way to have a long life was to get some serious chronic disease so you have to learn to take better care of yourself and then do it.Quote:
Originally Posted by Gab122
🤔😏 good point.
A friend of mine's father-in-law had WG and died this year at age 93. I don't know if he died of anything directly related to WG or not. But this is a good indication that we CAN live to a ripe old age.
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Thank you Anne! So Good to hear - I wonder how old he was when he was diagnosed. Do you know?
God bless him!
Thk you!
Gab
I was wondering that, too, and will have to find out. This friend is someone I communicate with a couple of times a year by birthday and Christmas cards. I only recently found out about that WG connection and just yesterday found out he had died at 93.Quote:
Originally Posted by Gab122
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