Hello from Canada

[Kellie613]

Hello everyone!
This all started for me in March of this year, 2013. I hit my leg on the door sil when leaving work one day. The bruise turned into a wound on my leg that wouldn't heal. I had 3 rounds of antibiotics. My family doctor was not happy with this at all. She thought it could be something vascular. She promptly sent me to a Rheumatoid specialist, who after some testing made the final diagnosis of Wegener's disease.
i was very weak and tired at first. I had no appetite. I lost 25 pounds. By the time I got all started on my medications it was May. She started me on 60mg of prednisone, 200mg of chemo. Then I had to see all the other specialists. Lung, Kidneys, Nerves all of which were great doctors and they all determined those organs had no involvement. I take Mepron to protect my lungs from different strains of pneumonia. After a month or so I was showing a little protein coming from my kidneys, so I take a small blood pressure pill for that. That has worked. Also, something for my bones.
What seemed hopeless at the beginning is finally starting to feel like the start of a possible remission coming soon!! I am very hopeful!
i have had a few bumps in the road but am starting to feel better now. I have returned to work for a few hours a day. I have been blessed with the most understanding and companionate partner. Who has been with me every step of the way.

[Dirty Don]

Welcome Kellie...glad you found this site...lots of good peeps and advice and experience being shared here. Though you had to get WG, it sounds as if you are in excellent hands already. Keep on working at it...there will be hills and valleys, ask any and all questions, just keep at it. Best to you.

[annekat]

Welcome, Kellie. I'm glad you found the forum. It is indispensable for many of us, and a great community of people. Your case sounds very familiar in some ways, but is pretty different than mine in others. There is a lot of variation in the disease, but with some common threads running through. It is good that you have no lung or kidney or other major organ involvement, but it is not clear to me, do you have sinus, nose or ear involvement? Or is it mainly skin symptoms such as the bruise that wouldn't heal? In any case, your treatment sounds typical, and if you only became sick in March of this year and already feel you are heading toward remission, then you are doing very well. Do keep us posted and visit the forum often!

[pberggren1]

I'm glad you found us Kellie. Welcome to the family.

[Kellie613]

Thank you Don. Yes, I feel like I'm in good hands! My family doctor is wonderful. As everything I've read so far on here, my Rheumatologist also seems to be right on track also with my treatment.

[Kellie613]

Hello annekat, yes, I see this site is a great tool. I'm just new to it as of yesterday. I'm shocked at how many people actually have WG! I thought this was a rare disease...hmmm...not so rare after all. It's comforting to hear everyone's stories and to know that we all are here for each other. You asked about the nose and ear involvement? Yes, I do have that as well. It seems to be getting better now. My ears are clear now, for about a month. It drove me nuts when my hearing sounded like I was hearing through water...if that makes any sense. Also, my nose. It was always stuffy, but way into my sinuses. It seems to be getting better now. Do you know anything about the sinus involvement? Sometimes my partner tells me there is a smell that isn't to pleasant. She knows I am very conscious of it and I want to know. So I don't get to close to people when speaking to them. I wonder if there is something else I could do for this? I use old fashioned remedies for stuffy noses. Steam, warm compresses, and that usually helps with the congestion. As far as I know there isn't any skin involvement other than the wound I had for months. It is now healed. Maybe it's pre-mature to think I'm going towards remission....wishful thinking :)

[annekat]

Well, if you are feeling a lot better, that counts for a whole lot, regardless of whether anyone calls it remission. I feel like I might be very close to a medicated remission, meaning one maintained by continued use of meds, but my doc has never used the "R" word.

I have the sinus, nose and ear involvement, as do a lot of people on here. There has been erosion of the bones in the sinuses and the septum, the latter resulting in loss of support for the cartilage that makes the bridge of the nose, so I have what is called a saddle nose... the appearance of my nose is permanently altered, although it is somewhat hidden by my glasses and not obvious to everyone, and I've seen pics of worse cases. Some of us on here have this, but not everyone with sinus/nose involvement gets it. It can be corrected with surgery once someone has been in remission for awhile. But back to the main point, sinus damage appears to be pretty much irreversible, unless there are surgical reconstruction techniques that might help, so we will always be producing excess mucus to fill up the bigger cavity spaces, if I'm understanding it correctly, and will be dealing with the coughing, crusting and other issues that come with all that mucus.

The ear and hearing issues are commonly due to to dysfunction of the eustachian tubes that drain fluid from the ears into the nasal cavity and also provide the right equilibrium of air on both sides of the ear drum. Ear infections can also cause damage. I have some permanent nerve damage in one ear due to an infection early on, and since then, hearing has declined in both ears, and I wear hearing aids. Some people get their hearing back to fairly normal, and some don't. Some have much worse hearing problems than I do, to the point of being totally deaf, and may benefit from higher-tech forms of hearing devices. It sounds like your hearing has already improved, which is great.

Your mention of the bad smell is interesting. I can't smell at all, except for very fleeting whiffs that I catch when I'm not trying. So i don't know if I have the bad smell in there. No one has said anything, but I don't get that close to anyone normally. Saline sinus rinses should help a lot and the brand most of us use is NeilMed, a plastic squeeze bottle system available at many stores. Another thing you could try is Alkalol, an herbal product for nasal rinsing and freshening that has been around for over a century. You can add it to your saline rinse, the amount should be trial and error, as it can be strong so should be diluted. I just saw it on the shelf at Rite Aid drug store, where you used to have to special order it. It might help with the odor. Hopefully as you improve the odor will go away. It sounds like you are being treated early enough in the game to minimize a lot of damage and avoid a lot of the problems that some of us have.

[Dirty Don]

The smell your partner is experiencing is most likely the drugs interacting and 'sweating' their way through the skin. My wife complains mightily when I come home from working out or golf as I 'smell' a lot! Not the usual sweat, but something stronger...has to be the drugs unless one is eating their way thru cabbage or something!! LOL! Drink lots of water, it helps a bit.

I have sinus involvement, my smeller is all screwed up, I cough up stuff every morning for a while (nothing vile, just a lot of it), E tube is stuck open if you can believe that, and a constant stuffiness even after a rinse...such is the damage, I'll take it.

And, of course there's lots of us Weggies here...it's a WG site!! LOL! Actually, depending on who you read or talk with, WG seems to affect about 1 in 30K...some places more, some places less...and it doesn't seem to be geographically related.

Keep asking those questions...very important as you begin to feel better about this.

[annekat]

Although Wegs is supposed to be so rare, it also seems to me that it might not be as rare as all that. Sure, this is a Weggie site, and we have new Weggies joining all the time because of that, but think of all the Weggies in the world who haven't joined the site or don't even know they are Weggies. And all the Weggies throughout history who died of complications from something they really couldn't name, or named it something else. Although most literature says 1 in 30,000, Phil believes it is more like 1 in 5,000. So it does depend on whom you ask. In any case, I think it is common enough that it deserves more attention than it gets. I have a few friends and acquaintances who are doctors, and I haven't run into one yet, regardless of their own field of specialization, who has to stop and think what it is when I mention it, and none of them acts like it is all that weird that I have it. They don't freak out about it, either.... they know it is treatable, though not curable. It is as if I'm not the first Weggie they have had personal contact or knowledge of, even though they may be pediatricians or into sports medicine or whatever.

[gilders]

Do you know anything about the sinus involvement?
Welcome Kellie. You'll find that everyone is effected differently with WG and consequently treatments can differ. But there is one thing that, as far as I know, every WG sufferer suffers from and that's sinus issues and more than likely ears to some extent.

I'm hopeful that in your case everything looks like it's under control.

I believe being back at work does help recovery. Just make sure you increase your hours SLOWLY!

Having an understanding partner is SO important when it's a disease that doesn't always show on the outside.

[Alysia]

Hi Kellie,
welcome to the forum. best experts of WG are just here.
I think that the smell from the nose is indicating that there is still an inflamtion there. when it will become better, I think that the smell will disapear. I remeber someone here writing about it, I think it was Frudo.
good luck and continue to write.

[mishb]

Hi Kellie and welcome.

I'm glad you found this place - the people on here are amazing.

I also have no sense of smell and most times I find it absolutely wonderful.
If there is an infection in the sinuses you can smell that - it's funky. To me, it always smelt like old socks

Take care, and again, welcome

[carriej22]

Welcome fellow Canadian.... :)

[Kellie613]

Thank you Carrie :)

[drz]

Hello everyone!
This all started for me in March of this year, 2013. I hit my leg on the door sil when leaving work one day. The bruise turned into a wound on my leg that wouldn't heal. I had 3 rounds of antibiotics. My family doctor was not happy with this at all. She thought it could be something vascular. She promptly sent me to a Rheumatoid specialist, who after some testing made the final diagnosis of Wegener's disease.
i was very weak and tired at first. I had no appetite. I lost 25 pounds. By the time I got all started on my medications it was May. She started me on 60mg of prednisone, 200mg of chemo. Then I had to see all the other specialists. Lung, Kidneys, Nerves all of which were great doctors and they all determined those organs had no involvement. I take Mepron to protect my lungs from different strains of pneumonia. After a month or so I was showing a little protein coming from my kidneys, so I take a small blood pressure pill for that. That has worked. Also, something for my bones.
What seemed hopeless at the beginning is finally starting to feel like the start of a possible remission coming soon!! I am very hopeful!
i have had a few bumps in the road but am starting to feel better now. I have returned to work for a few hours a day. I have been blessed with the most understanding and companionate partner. Who has been with me every step of the way.

Welcome to our forum. Your progress sounds typical of a good response to treatment so best wishes for better health and good recovery too.