Recently Diagnosed - Hi from Australia

[LisaR]

Hello, my name is Lisa and I am 37 years old and a mother of 3 from Australia.

I was diagnosed with WG 8 weeks ago, and to be honest I am still very overwhelmed by it all. I had never even heard of the disease prior to this news. I have enjoyed reading the posts and trying to learn more about what I might face in the future. I am currently working with my specialists to try and get my medication right!! I feel like I have a good team of specialists helping me with this illness.

I really just want to feel better, I feel like an old lady and I have no energy at all. I keep trying to look 3 months ahead, telling myself I will feel better by then. I really hope so.

Lisa

[andrew]

Hi Lisa!
I'm from Oz too. It's a very overwhelming thing to get a diagnosis of something you've never heard of and, in my case - can't even spell it lol

Awesome that you have a good team of doctors, that's absolutely critical especially just after diagnosis. Just keep putting one foot in front of the other and give your self a break. Rest when you can and don't push yourself too much if at all possible with three kids!

Andrew

[mishb]

Hi Lisa,

Another Melbournian here. Welcome to the forum.
We also have a WG Australia group on facebook, if you want to come over and have a look.
Here is the link.
https://www.facebook.com/groups/516643745050360/


What are your symptoms and what meds do they have you on?
I am under the specialist clinics at The Alfred Hospital, where are you going?

I'm sorry that you have been diagnosed with WG but hang around here long enough and you will see that it's not so bad ......really (okay, maybe I need some of Don's coffee)

Take it easy and ........

[Anth]

Welcome Lisa! My name is Anthony and I am also a Melbournian! Really good supportive bunch of people on here. If there is anything you want to know don't be afraid to ask.

Cheers, Anth

[woz]

Hi Lisa, It is a bit daunting at first, little steps, plenty of rest, ask plenty of questions,
both here and your doctors, the more you know the better you feel.

All the best woz (another aussie)

[LisaR]

Thanks to everyone for making me feel so welcome.

For 6-12 months prior to being diagnosed I constantly had sinus / flu like symptoms, I was always unwell. My GP tried different antibiotics but nothing ever worked. I also had skin lesions which my Dr thought was due to me being so run down. In the end she referred me to an Ear, Nose and Throat surgeon.
He did an examination (camera up the nose - lovely) and said to me he would like to take a biopsy to check for a rare disorder just to rule it out.

He called me personally a few days later (never a good sign) to tell me I had Wegeners. I had no idea what that was and did a google search and completely freaked out!!!! I was then referred to a rheumatologist who was great and from there I had all the bloods / urine tests and was referred to a lung specialist. That 10 day period was quite harrowing waiting for all the results. Lung and Kidneys came back clear.

The diagnosis was that I had limited Wegeners as it was in my upper respiratory, skin and joints.

I am on 15mg Prednisolone, 15mg methotrexate (sunday only), folic acid. Since I have been on this dose I have been getting worse. My Dr sent me to another Rheumatologist this week for a second opinion and he thinks the doses are too low. I go back next week to my main specialist to work out the way forward.

Currently I am struggling with the pain in my nose again, general aching all the time, especially in my legs. I also have a two skin lesions on my legs. And just feeling so exhausted all the time.

Can I ask about people experience with remission, if you are there yet and how long it took?

Thanks again for the support, its much appreciated.
Lisa

P.S I have no idea how to use this site so I hope my thanks reaches the people that commented!!!

Hello, my name is Lisa and I am 37 years old and a mother of 3 from Australia.

I was diagnosed with WG 8 weeks ago, and to be honest I am still very overwhelmed by it all. I had never even heard of the disease prior to this news. I have enjoyed reading the posts and trying to learn more about what I might face in the future. I am currently working with my specialists to try and get my medication right!! I feel like I have a good team of specialists helping me with this illness.

I really just want to feel better, I feel like an old lady and I have no energy at all. I keep trying to look 3 months ahead, telling myself I will feel better by then. I really hope so.

Lisa

[pberggren1]

Welcome Lisa to our Family. I'm glad to see you have a good team of doctors. There are many others from Australia on here and from Melbourne particularly. Melbourne is prob the best city to be in with Wegs in Australia because they have some top docs there.

So far you are using this Forum very well. Seems like you are responding well to the meds. Please keep us posted. I am also 37 and first got sick and diagnosed with Wegs when I was 26. I am glad to hear that the Wegs did not damage your lungs or kidneys.

[mishb]

There are many people on here who have now reached remission......some with medication and some now off meds.

Your dose of pred and MTX (methotrexate) is very low and is basically a maintenance type dose.
To knock some of the symptoms on the head quickly, you should be on higher doses.......but then higher doses also bring their own evils in to the picture.

[Dirty Don]

Welcome Lisa, glad you found us for yourself! You have good docs it sounds like...your rheumy is correct in that you have too low a dose of pred. I was/am in exactly the condition you describe: got away with no lung or kidney damage (lungs looked like broken glass for a while, but pred must have corrected it along with breathing drugs) and was put on 15mgs/mtx/week and 40mgs pred/day to start with. Have weaned over 2 years off the pred then just recently succumbed to the 80% chance we all endure of relapsing in the first 2 years. Fortunately, it's been a minor relapse, but nevertheless, it was a relapse caused by going off pred...guess I may not be able to for a while at least at 3mgs/day. You need the pred to knock down the inflammation markers, the mtx is to control the AI.

The overhwhelming sensation of all this will recede somewhat as you voyage thru this disease. Lots of fortitude and patience will go a long ways as long as you have those good docs. You must stay in contact with them, notice and react to all weirdnesses in your body now, and take your protocols/drugs faithfully till you feel a need to look for additional help or can function better and more often. You will feel better in 3 months, but you will never feel better completely...way WG is...but, I know you can make it and can raise those 3 just fine...takes a lot of guts and help...you can do it! Best of luck to you.

[annekat]

Welcome, Lisa! Everyone has pretty much said it all, but I wanted to add that I'm glad you have found the site! I hope you are getting your dosages upped soon, so you will see improvement. You are in good company with the other members from Melbourne and the rest of Australia, and all of us here! Wegener's would be so much more difficult to deal with if we didn't have this forum. It is the greatest. Keep us posted on your progress!