New to the disease and group

[JassyLupa]

I am waiting on the results of my kidney biopsy for a final confirmed diagnosis of Wegner's. Meanwhile, I have been on 60 mg of Prednisone for weeks....and cannot seem to figure out how to get a night's sleep. I live in the mountains of Virginia. My husband, married sons, sisters and friends cannot believe this has happened to me.....the healthiest person they know. Anhhh welllll........

[renidrag]

Welcome JassyLupa, this is the finest WG forum available with great people and a lot of answers. Sorry you have to be here. What other meds are you taking, if any, and when do you get the biopsy results? Please let us know your story when you have time. Where are you getting treatment?
Dale

[mishb]

Hi Jassy and welcome to the forum.
I'm sorry that you have had the need to find us :crying:
Do you just have kidney involvement or are there other area's as well?

You will find that you have a million questions and even sometimes when you get some answers, it just doesn't make sense :unsure:
You are not alone in this and we will be with you all the way :hug1:
Sometimes you may feel the need to yell out in anger or in frustration :predrage: - we hear you - we are always here (or someone is)

I hope you get your biopsy result quickly so that proper treatment can commence.

[MikeG-2012]

I am waiting on the results of my kidney biopsy for a final confirmed diagnosis of Wegner's. Meanwhile, I have been on 60 mg of Prednisone for weeks....and cannot seem to figure out how to get a night's sleep. I live in the mountains of Virginia. My husband, married sons, sisters and friends cannot believe this has happened to me.....the healthiest person they know. Anhhh welllll........

I had similar results with the 60MG of pred. I'm a BIG guy, so maybe it didn't affect me as much, but I did have some pretty good insomnia the first few weeks on high doses of pred. Melatonin helped me relax a bit at night, slowed the racing mind a little. Also, reading helped me get to sleep. We had an air filter running in the bedroom for years, and when I needed to sleep during the day, I made sure that when I was in the bedroom to sleep, the filter was on. Unfortunately, it took exhaustion to finally let me get a hard sleep.

I used to be pretty healthy too. Not anymore though. This disease stinks, but there is a lot of information out there to help, including this forum of good people! It's a great place to hang out, post your rantings, post good news, post about anxieties of upcoming procedures and tests, etc. At least one of us has probably been through just about every aspect of the disease, so ask lots of questions when you need answers.

Welcome to the group, and I am sorry that you are now a part of the group, but glad you found us!

[Alysia]

Hi Jassy,
welcome to the forum.
the beginning of WG it the toughest time. you will prob get more med and can reduce your pred, and then you will be able to sleep and feel better.
I can understand how overwhelming all this is now for you :sad:
you are not alone anymore. we are with you. hang in there :hug1:

[MaxD]

JassyLupa, Sorry to hear about this striking you out of the blue (as it did me). I would only stress the importance of consulting a GPA/Vasculitis center specialist (and having your local doctor work with them) for treatment options if your diagnosis is confirmed. There's lots of information on the vasculitisfoundation.org website, including names of specialists across the country. Wishing you the best!

[annekat]

Welcome, Jassy, and I'm sorry you had to look for us but you have found the right place to be. I have been forwarding this link and it is still on my clipboard: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) . It takes you to the list Max refers to, of recognized specialists around the world which you could see or have your doctor consult with, depending on where you live.

Sorry about the pred and the sleep. I'm not big but didn't have much problem with this at 60mg., don't know why, everyone is different. i hope it gets better and you can taper soon to lower amounts and notice a big difference. Melatonin does help and is cheap and readily available OTC.

[dboyer]

Mike, My name is Darrell from Texas and I was diag. with WG in 2010. I was in intensive care for 8 days-had a great Dr. reum.-specialist-only taking about 20mg a day. So far so good-usual side effects of pred.-lately some infection-A mosquito bite is a big deal! Darrell

[annekat]

Mike, My name is Darrell from Texas and I was diag. with WG in 2010. I was in intensive care for 8 days-had a great Dr. reum.-specialist-only taking about 20mg a day. So far so good-usual side effects of pred.-lately some infection-A mosquito bite is a big deal! Darrell Welcome, Darrell! Here you will find all the info, support, and friendship you may need from others with the same disease in all its variations. Maybe you can start your own thread and tell us more about your story, if you'd like. We'd be glad to hear it. Just go to New Member Introductions and click Post New Thread.

[keegan55]

Welcome to the group...Sorry you have the disease I sm also new and having problems which this wonderful group has helped with

[mishb]

Hi Darrell, I'm glad you finally decided to write a post. It took me a few months after joining to make my first comment.
........now it's hard to shut me up:razz:

I have found that mosquito's don't like me anymore. I haven't been bitten in years.
I presumed that they can tell that the blood is not good - or maybe they can smell or taste the medication.

[annekat]

Me, too, Michelle.... lurked for awhile. Now I can't shut up, either!!!:flapper:

[keegan55]

Welcome sorry you have need of this group. This however is the greatest bunch of people. Do you take the pred early in the morning all at once my pharmacist suggested that I was on pred for arthritis when they gave it to me sending you positive energy to get some sleep again welcome to the group

[Miska]

Welcome! Marissa from Houston area! I hate pred with a passion! Worst side affects but yet it's my only means of living. I am new here too. Everyone has been extremely supportive. It's a wonderful place!

[Jaypfei]

Hey JassyLupa,

Welcome to the forum. Lots of very nice people here. As everyone else has expressed, sorry you had to search us out, but you're not alone any more. Prednisone is a drug most all of us can relate to. Nothing like feeling as though you're a hyper active, ravenous insomniac. I just used my sleepless nights to craft and usually crashed every couple of days. Anyway, just wanted to say "hi".

[windchime]

Perhaps this is it?

Relapsing polychondritis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Relapsing_polychondritis)

[LisaT]

Perhaps this is it?

Relapsing polychondritis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Relapsing_polychondritis)

Thanks for that link. It led me to a discussion of temporal arteritis, which seems to be a potential cause of my headaches and is associated with RA and poly myalgia rheumatica (another overlapping condition that my mom has). I will bring this up when I see my dr next.