My story...

[Smashing223]

Grateful to have found this forum. I've been reading so many stories that resemble my own.
20 years ago, November 2000, was the first time I became so ill. What I thought was a virus, ended after a month with severe hip impingement.
After that I had regular bouts of sickness that had strange and random symptoms.
Mostly pain and sinus/mouth ulcers and anxiety.
In March 2011 I was so ill and had severe swelling with petechiae rash etc. I had an appointment with head of Rheumatology in Calgary. She immediately said wegeners and wanted to keep me in hospital but I needed to be home for daughter so she called my gp and talked him through prednisone treatment.
I did the treatment 3 times over the next year. And it definitely helped with swelling.
I went back to see a different rheumatologist after that, at the time bursitis in my elbow was an issue too and the only thing she said in my 3 minute appointment was my nurse will show you arm exercises haha I guess that really turned me off of driving 3 hours to see any more specialists!
After that my go said I was his mystery patient and all he could do was manage my symptoms. My biggest concern was the kidney pain and blood in urine.
That's how I've managed until this day... treating my symptoms.
I have spinal stenosis and get epidural injections for that which actually help me overall with other symptoms.
It's been a tough go and since this past December I wake up so sick at least 3 times a week,
Migraine, neck pain horrid face pain, nasal sores, mouth sores right leg swelling, petechiae rash on back of legs and my back shots are wearing off.
I wake up sick, take Rizatriptan wait 20 minutes later 3 advil, hot shower netty pot and tons of water until the nausea passes. It gets me to work so I'm grateful for that.
I feel like I'm fading... maybe I just need to winge ha.
I was just curious if others just manage symptoms?
I dread taking prednisone again...
Thanks for letting me join and reading my long story...

[Pete]

Hello Smashing!! You've had quite the time of it. I hope you can find a doc with good wegs experience who can get you into a good remission. I'm tagging LisaT and marta who are Canadians. They may be able to guide you. Also, you may want to check the Vasculitis Foundation website and look for a doctor in your area.

[drz]

It sounds like the doctor in Calgary might be a great resource. Anyone who can diagnose it correctly upon first meeting and knows how to treat it is worth keeping.

[Masha]

Hi Smashing,
Welcome. I am glad you found us. I am confident we can give you the support and direction you need. You are in great pain, and I believe the right doctor can help you. Did the doctor in Calgary do tests to determine your Wegeners diagnosis?
Please don’t let your dislike of prednisone stop you from seeking superior medical care. You can cross the prednisone bridge when you get to it. There are people on this forum who have reached remission and are no longer on that drug.
None of us can suggest how and with what you should be treated, but I am confident that with the right doctor that you will be taking steps to feeling better.
Please keep us updated on your progress.
Masha

[Smashing223]

Unfortunately she retired 😢

[Smashing223]

Thank you Masha
I've decided to see my GP this week and get something going. Get a referral and see a new rheumatologist. I'm really not afraid of the prednisone, I think I'm more afraid of the treatments that involve any surgery or treatments that will make me feel worse. I have a busy life!! I've just gotten used to the struggle every day but it's time to do something for sure.

[marta]

Grateful to have found this forum. I've been reading so many stories that resemble my own.
20 years ago, November 2000, was the first time I became so ill. What I thought was a virus, ended after a month with severe hip impingement.
After that I had regular bouts of sickness that had strange and random symptoms.
Mostly pain and sinus/mouth ulcers and anxiety.
In March 2011 I was so ill and had severe swelling with petechiae rash etc. I had an appointment with head of Rheumatology in Calgary. She immediately said wegeners and wanted to keep me in hospital but I needed to be home for daughter so she called my gp and talked him through prednisone treatment.
I did the treatment 3 times over the next year. And it definitely helped with swelling.
I went back to see a different rheumatologist after that, at the time bursitis in my elbow was an issue too and the only thing she said in my 3 minute appointment was my nurse will show you arm exercises haha I guess that really turned me off of driving 3 hours to see any more specialists!
After that my go said I was his mystery patient and all he could do was manage my symptoms. My biggest concern was the kidney pain and blood in urine.
That's how I've managed until this day... treating my symptoms.
I have spinal stenosis and get epidural injections for that which actually help me overall with other symptoms.
It's been a tough go and since this past December I wake up so sick at least 3 times a week,
Migraine, neck pain horrid face pain, nasal sores, mouth sores right leg swelling, petechiae rash on back of legs and my back shots are wearing off.
I wake up sick, take Rizatriptan wait 20 minutes later 3 advil, hot shower netty pot and tons of water until the nausea passes. It gets me to work so I'm grateful for that.
I feel like I'm fading... maybe I just need to winge ha.
I was just curious if others just manage symptoms?
I dread taking prednisone again...
Thanks for letting me join and reading my long story...

Hey Smashing, nice to meet you, sorry it's on these terms.

My name is Marta and I live in Jasper, but originally from Edmonton where the BEST Vasculitis doc in Canada works out of.
To me - from your story (not long at all actually) it sounds like they're just treating your symptoms and not really the disease process itself.
My doctor - at the UofA, is Dr. Elaine Yacyshyn. She is a Vasculitis ROCKSTAR!!! and only takes Vasculitis patients. If you're into a two and a half hour drive to YEG, she's the best thing that has happened to me (and I've hooked a lot of Alberta WG patients on to her).

She also does consults too with docs who have WG patients. At the very very least, you should get your GP to give her a call and consult. She's the most amazing human being I've had the honour of meeting from the medical profession. She did the very first Rituxin treatment for a WG patient in Canada in the 90's. She's a trail blazer, and we're lucky to have her in Alberta. So you can either get a referral to her through your doc, or you can get your doc to consult with her on your case.

If you have any question or if there's anything I can help with, send me a PM, and I'll give you my contact info and we can chat.
This is a crazy ride, but there are some amazing things that come out of it. I've had three people on this forum come visit me from across the globe - people, amazing people, I would have never met had I not gotten sick, and I have another Weggie, I met on here, coming to visit me in May. Focus on the good that comes out of this, deal with the crappy stuff as it comes, and know that having each other's backs can save our lives.

Stay strong, and get on your docs to move along toward a doc who knows WG and wont be learning their craft on your illness.

marta

[NatriceRomeo]

Hi Smashing,
I concur with everyone else. It sounds like you are treating your symptoms & though that may sounds great, there is still damage being done to your body which can be permanent.
Good luck! & welcome!


Sent from my iPhone using Tapatalk