CanadianGuy... really???

[CanadianGuy]

Hello to all in this great forum from CanadianGuy... or maybe more descriptively... CanadianDad!
First of all... let me begin by apologizing for the exclamation marks. I don't know how to stop using them! I don't know if it's WG related... since it's my daughter who has WG
She's 21 years old... and has been diagnosed since she was about 16. It started with what appeared to be a cold that just wouldn't go away… but then she started to get little blood blisters at the base of her fingernails and her toe nails. After endless series of doctors appointments and countless wrong diagnostics (including "teenage hormones" and polyps), we finally got he correct diagnosis after a trip to Sick Kids in Toronto.

She’s had her throat “stretched” several times and has developed quite a bad cough that seems to be getting worse at night. She takes some codeine before going to bed… the doctor doesn’t seemed concerned about it…. but I am. The doctor (who is an excellent physician) has increased her prednisone to 50mg… but doesn’t know for sure what it is.

Does anyone have similar symptoms?

[Jack]

Hi, Sorry to hear about your daughter!

Lung involvement is very common with Wegener's, I cough constantly and can only sleep for an hour or two at a time due to my own problems with it. Is she seeing a doctor who specialises in auto immune diseases? This is essential, or things like this can go untreated while permanent damage is occuring. This is especially true of renal involvement which may show few symptoms untill it is too late to treat.
What medication is she taking? How often does she follow up with her doctor for blood tests etc?

[CanadianGuy]

Thank you Jack!
That Fedora is seriously sweet!
My daughter sees ENT, Nephrologist, Pulminary, and Rheumotologist. Originally she had some renal involvement and a couple of spots on her lungs... but the most obvious signs were the constant stuffed nose, swelling of her joints and the little blood blisters at the base of her finger and toe nails. They managed to get it under control but the stuffed sinuses and dry cough lingered and have only gotten worse. I will talk to her this evening and get an exact description of her dosage... but most recently she's taking Methotrexate (injectable), Prednisone, and Losec. The doctor noticed she was having elevated Liver Enzyme levels and told her to stop taking the Methotrexate for a while.

Have you or anyone else had problems with increased Liver Enzymes?? Today she went to see her Nephrologist... so I'll have more info later.
Thanks again for the welcome Jack!!
Guy

[Jack]

Sounds like most aspects are being covered.

There is always a worry when new members join that they are not being treated properly. There is a marked lack of knowledge among many of the medics and there have been a couple of unfortunate occurances on the site this year.

Hope all goes well for her. My own sinus problems cleared up other than a runny nose, but my cough is a real problem and I've never found anything to help it much.

[CanadianGuy]

Thanks once again Jack! I think that Weggies (new term for me) are well served by people like you who provide such valuable information! (sorry about the exclamation marks! Oh damn... did it again! Forget about it!)

The cough seems to be quieter with the codeine... but I don't know if it's because she's being sedated more... or because it's actually calming her cough. I think it's more the sedative effect.

The cough and chronic sinusitis is a mystery to me. How is it that the Wegener's seems to be dormant in the blood work... but the cough and sinusitis is still very prevalent??? I'm a bit concerned about the Liver Enzymes... but the kidney tests all turn up ok.

One of the zillion things I would like advice on... is the drug Weggies love to hate.... Prednisone. My daughter is 21.... and so she's more worried about the side effects of the drug... than she is about the beneficial effects. As a father.... I want her to get better.... but I also have to realize that she's a young girl who fears gaining weight, hair loss, etc. Any suggestions on what I can do as a father???

One thing I have to say to all in this forum.... Hope is stronger today than it has ever been. I personally think that a cure is not that far off... considering that this disease seems to fall under problems with the autoimmune system. New treatments are on the horizon... just keep hope alive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! !!!!!!!!!!!

[jola57]

Hello Guy and welcome from fellow canuck. I have had limited sinus problems and other than once in a while getting a dry spasmadic cough no upper respiratry problems. Each of us weggies is different and has multiple symptoms. I did have black smuges under my nails among other symptoms but they went away after I was put on cyclophosphamide - chemotherapy. I balooned from comfortable 160's to 215 lb in 2 years time since being diagnose in december of 2006. I hope that one of your specialists is well versed in Weggener's, although treatments are very basic having a knowlegable physician is a must, specialists treat their own areas but a weggie doc will look at the overall picture. I am sorry that your daughter has had to deal with this disease since such an early age, weight gain is also a big block for me and I still think of myself as thin then look in the mirror and get a shock.

[crackers]

i'm afraid that for us weggies pred is a necessary evil.in some cases it has been a life saver,literally.i can understand a young girl being concerned about the weight gain but hopefully,somewhere down the line,she will come off the pred and lose the weight.please pass on to her my best wishes.
john.

[Jack]

The curse of steroids! Trouble is, they keep most of us alive and there seems to be no alternative at the moment - See Prednisone

[CanadianGuy]

Scousers, Brummies, Canucks, Men, Women, Old, Young…. This disease obviously doesn’t discriminate! LOL!
Thanks for the supportive messages and advice from Jolanta, John, and Jack!
I’m definitely trying to encourage my daughter to view the prednisone as a necessary evil. She says that I just don’t understand the incredible hunger she feels when she’s on it… so we’ve both agreed to try and eat smaller meals to control weight gain (besides the fact that I could stand to lose a ton of weight as well!

I wish there was something I could do with this cough of hers. It seems that all Weggies suffer from this dry hacking cough that get’s worse in the evening… so surely someone has had some experience in how to make it better???

[CanadianGuy]

p.s. thanks for that thread on prednisone Jack!!! It's definitely an eye opener on the effects and side effects of that miracle drug!