My Story...

[ErikaCS]

Hi Phil,

I would appreciate the contact information. I will be seeing my Rheumatologist this Wednesday and I will find out if she is in contact with someone with alot of WG knowledge, if not I will ask her to get in contact with him.

As for my nose, started with crusting, still does. I was given an ointmentrecently, helps a bit, but not for long. I do have a nasal rinse bottle and the packets, I find it really hard not to get sick everytime I try using it.

No I have not gone for a hearing test. My left ear, comes and goes, when my ear flares up, I start getting dizzy. If I lean my head to the left the dizziness gets worse. Could the infection from my nose also be in my ear?

The dates you are here will be around the time I will be getting my 3rd treatment, so I do not know.

Thanks,

Erika

[marta]

Hey Erika,

Marta here from Jasper. Sorry you're going through this and had to join our elite gang... this forum is a great place though and has saved my sanity on a number of occasions. My doc in Edmonton is Dr. Elaine Yacyshyn and she's out of the UofA. Like Phil said she was at Mayo and worked with Dr. Specks, so she has no problem calling if she feels she needs to consult on a WG case, which is awesome.

I'm going to make a guess that what has been disguising as a sinus/ear infection isn't really an infection but active Wegener's. Just a guess, but one made from personal experience. The ear thing for me is inflamation of the eustachian tubes which closes off the ear and creates a vaccuum in there which then pulls in fluid from surrounding cells and fills the ear up with fluid. You can tell this is the case if the sound coming in changes as you move your head and the fluid swishes inside changing the quality of sound actually getting through to your sensory nerves. I just had tubes put in my ears and it has restored my hearing to almost - ALMOST - pre wegs.

You can send me a personal message if you would like any other contact info or anything else I can help you with. I'm in Edmonton often (more often than I'd like) so we can hook up sometime, or if you're ever in the Jasper area let me know. If you're not happy with your doc, Dr. Y is taking new patients but she's very busy. I got in quickly though because I was having a flare that was not getting under control with what my old rheumy was doing (or not doing) and they got me in within weeks.

Take care,
marta

[pberggren1]

Hi Erika:

My doctor's name is Senyo Tagboto. Nephrology

Phone: 306-773-5855 Fax: 306-778-3799

Central Medical Clinic
6 1061 Central Ave. N.
S9H 4Y9

If you think you want to meet me that week I am in Edmonton just let me know. I can give you my Aunt's number and adress. We will be staying with her. I know she lives on the south end just north of the Whitemud I think around 106 St.

[Rini]

It is cool u guys live close, good 2 read ur hearing is mostly restored Marta!

Hey Erika,

Marta here from Jasper. Sorry you're going through this and had to join our elite gang... this forum is a great place though and has saved my sanity on a number of occasions. My doc in Edmonton is Dr. Elaine Yacyshyn and she's out of the UofA. Like Phil said she was at Mayo and worked with Dr. Specks, so she has no problem calling if she feels she needs to consult on a WG case, which is awesome.

I'm going to make a guess that what has been disguising as a sinus/ear infection isn't really an infection but active Wegener's. Just a guess, but one made from personal experience. The ear thing for me is inflamation of the eustachian tubes which closes off the ear and creates a vaccuum in there which then pulls in fluid from surrounding cells and fills the ear up with fluid. You can tell this is the case if the sound coming in changes as you move your head and the fluid swishes inside changing the quality of sound actually getting through to your sensory nerves. I just had tubes put in my ears and it has restored my hearing to almost - ALMOST - pre wegs.

You can send me a personal message if you would like any other contact info or anything else I can help you with. I'm in Edmonton often (more often than I'd like) so we can hook up sometime, or if you're ever in the Jasper area let me know. If you're not happy with your doc, Dr. Y is taking new patients but she's very busy. I got in quickly though because I was having a flare that was not getting under control with what my old rheumy was doing (or not doing) and they got me in within weeks.

Take care,
marta

[Rose Cozzette]

I appreciate all your advice, I will be on this site as much as I can. I have recently started taking Rabeprazole, is that an acid blocker? I have a hard time drinking water, I have to force myself. Before this, I was never one to drink much water... now it is very important I do. Can I add something to the water that will still help flush out the ctx?

so sorry you are going thru this but know that this blog is the best! it has kept me going. there will be many tests and labs done but is all necessary to monitor your progress, and yes you will have progress albeit slow. big hugs to you...

[NicShaf]

Hi Erika, welcome to the site. I didn't have a chance to ready everyone's responses, I just read your story, so I apologize if I'm redundant.

That is great that your Mom stepped in and helped you get a specialist, and to help you out. So, you have had sinus involvement and joint pain? Are your lungs or kidneys involved?

They don't really know what causes us to get Wegs, unfortunately. It's just one of those things. I think they say it either comes from an infection that your body can't fight off, which turns your immune system against you basically, or I have also heard of cases coming from some sort of toxic exposure. I think everyone here has their own theory on where their case stems from...I think mine was a cold/flu that I just couldn't kick. I think the Mayo Clinic website has a really good description of Wegs, it explains it in layman’s terms and was the most comprehensive overview that I found after my diagnosis.

I hope things start getting better for you very soon. Keep us posted

[Michael Dean]

Erika, Welcome to the forum sorry that you are going thru WEGS also. I was diagosed back in April and have been on high doses predizone, it was 60 megs for about 3 months. I am alos doing the CTX infusions, my 4th one will be tomorrow. I was told also that I would probably have to do 6 infusions. But the good news is after 2 ctx infusions my blood results got bettter and after 3 infusions my blood results returned normal. My Rheumitologist has started reducing my preds and says this hopefully will be my last chemo. She hopes to put me on some milder drugs. So keep your head up sounds like you're on the right drugs, but the advice about the water and stomach protection is what I've heard also. I reguarly drink a minimium of 135 oz of water a day (8 water bottles) and right after chemo 169 oz a day (10 bottles). But my WEGS attacked my kidneys.

[ErikaCS]

Thank you all for your responses!! I appreciate it very much!!

I went to see my Rhuemitologist today and she told me that my kidneys are worse than the first tests I had, but they are stable after the first IV treatment. She has brought my preds up to 60mg, from 50mg, added Didrocal, Calcium 1500mg/day, Vit. D 1000 IU/day. Will start tomorrow...

For the past week the pains are coming back with a few more pains (chest area), a few days ago it wasn't bad, the last couple of days it has gotten more painful. My hair is also falling out, did not expect it. Next Monday is my next IV treatment.

Thanks Again!!

Erika