Hi to you all

[tonyk]

Hi to you all, I've joined the forum to try and find out as much information as I can about Wegener's, my 84 year old father has just been diagnosed with this problem, many thanks in advance for the information I'm about to receive, may god bless and look after you all.

[Debbie C]

Hi Tony,sorry to hear about your father getting this disease but you found a good place to get answers,vent,advise or whatever you need. Where does your father have involvement at ? Does he have a knowledgeable WG dr ? That is VERY important. What type of meds is he on ? Best of luck to him because it will be is life changing disease for him and the whole family but things start out scary not knowing what to expect but generally do get better with the right dr. and meds. Keep us posted

[annekat]

Hi, Tony, and welcome. I'm sorry to hear your dad is getting WG at such an advanced age. But that doesn't mean he can't be treated and improve, just like the rest of us. You have come to the right place to learn about this disease. You will get lots of support on here. I agree with Debra, we'd like to know more about what parts of his body are involved and what meds he is taking. Every case is a little different. Best of luck to him for getting through the initial, least comfortable stages, and moving on to feeling at least halfway normal again! With the right treatment, this will most likely happen. Many of us are doing quite well now. Please keep us posted and feel free to ask anything or share anything. Also, I know there are others on the forum from Ireland and England and Wales, and probably Scotland.... check the map link at top of page to see where they might be located. You can send a private message to anyone on the forum.

[tonyk]

Thank you Debra and Anne for your replies, and hope you both are feeling as well as you possible can, my father was suffering with cramping in his right foot I think it was caused by dehydration because the kidneys were not working properly also his hearing was getting worse, he is also in the early stages of dementia, he is now on nineteen tablets a day and three injections a week but appears to be comfortable and is getting up and about, at the age of eighty four there is no point in talking about life expectancy he has out lived all his friends and most of his enemies too, just wondering does this problem throw up any unexpected features that we should look out for again many thanks for your kind words. Tony

[annekat]

Thank you Debra and Anne for your replies, and hope you both are feeling as well as you possible can, my father was suffering with cramping in his right foot I think it was caused by dehydration because the kidneys were not working properly also his hearing was getting worse, he is also in the early stages of dementia, he is now on nineteen tablets a day and three injections a week but appears to be comfortable and is getting up and about, at the age of eighty four there is no point in talking about life expectancy he has out lived all his friends and most of his enemies too, just wondering does this problem throw up any unexpected features that we should look out for again many thanks for your kind words. Tony Assuming he is on an immunosuppressant, like cyclophosphamide (CTX) or methotrexate (MTX), he needs to be extra careful not to be exposed to infections or viruses, as the body will have a harder time fighting them off and they may trigger a flare. So if out in public or around other people, or handling money, this means lots of hand washing, using hand sanitizer, not touching one's eyes or nose more than necessary, stuff like that. There are other concerns that others will bring up, I'm sure.

The cramp in the foot could also be from peripheral neuropathy, which many of us get due to nerve damage in the spine from Wegs. But I know nothing about kidney involvement, since I don't have it, so you could be right about that. If it is PN, there would probably be some overall numbness and pain in the lower extremities.

[tonyk]

Thanks Anne, I'm sorry that I cant talk at length about what type of Wegener's he has it is a new world we have just entered, and dealing with all the medical description's and medications is a bit overwhelming at this moment, just have to put our trust in the great doctors in Beaumont Hospital.

[annekat]

Thanks Anne, I'm sorry that I cant talk at length about what type of Wegener's he has it is a new world we have just entered, and dealing with all the medical description's and medications is a bit overwhelming at this moment, just have to put our trust in the great doctors in Beaumont Hospital. That is OK, Tony, I can imagine how overwhelming it must be. When and if you are ready, you can share more details and will have more experience from which to ask questions. I'm glad you have doctors you can trust.

[Alysia]

Hi Tony,
welcome to the forum. it is prob complicated situation for you all. I wonder if the treatment is different at your father's age. I dont know about it.
I hope he can get good treatment and "hold" that illness. good luck !

[tonyk]

Hi Alysia, Just from reading some of the threads here on the forum this Wegeners does not affect people in the same way or with the same aggression, my dads problems are mild in comparison with others on the forum and at the moment he is very stable, thanks so much for your reply and I hope I find you in good health. Not having the problem myself I feel like I'm on the outside looking through a window if that makes sense ?

[annekat]

Tony, I'm very glad that your dad's case of WG seems mild to you, compared to some of the things you have read on the forum. I consider mine fairly mild, too, and feel lucky in that way, even though I've lost most of my hearing, have a saddle nose, etc. Those are things that could have been avoided if I'd been diagnosed sooner. I hope it continues that way for your dad and never gets worse than it is now, and gets better and better with time.

[tonyk]

Hi Anne, The fact that things could have been kept in check with early diagnosis must only add to your frustration, and hearing loss is such an isolating problem, not to mention any facial altering for a woman must be very difficult, keep positive none of us know what's around the corner in this amazing life. Tony

[Alysia]

Hi Alysia, Just from reading some of the threads here on the forum this Wegeners does not affect people in the same way or with the same aggression, my dads problems are mild in comparison with others on the forum and at the moment he is very stable, thanks so much for your reply and I hope I find you in good health. Not having the problem myself I feel like I'm on the outside looking through a window if that makes sense ?

Hi Tony. thanks for your reply. yes, it makes sense. you dont have it.
sometimes I wonder what is more difficult: having WG or taking care of loved one having WG. both are aching.

[tonyk]

Hi Alysia, You guys being the front line troops most definitely have the biggest heart ache, a lot can be learned by reading some of the threads of the brave people on this forum, hope you keep well, Tony

[annekat]

Hi Anne, The fact that things could have been kept in check with early diagnosis must only add to your frustration, and hearing loss is such an isolating problem, not to mention any facial altering for a woman must be very difficult, keep positive none of us know what's around the corner in this amazing life. Tony Thanks, Tony. I get by pretty well with my hearing aids, and my saddle nose is not as extreme as some and is pretty well hidden by my glasses. There is a picture of me on the thread called Close Encounters of the Weggie kind, with another local Weggie. I am 60 years old and in spite of any Wegs related appearance issues, I feel I'm still somewhat attractive to a fair number of men around my age and even younger. So yes, these are issues that I would like to have avoided by earlier diagnosis, but they are not life threatening. Thanks for the positive thoughts.... you are right, we don't know what is around the corner.

[mishb]

Hi Tony,

I'm a bit late into this thread but, I am so glad you have found this site, on behalf of your dad.

I'm also glad to hear that he is doing good.

[tonyk]

I've always found that confidence rather than looks was a more attractive trait in people, and by the sound of things concerned mothers in Olympia Washington better lock up their sons, keep positive, Tony

[tonyk]

Never to late Michelle, and I think your quote is great. Tony

[annekat]

I've always found that confidence rather than looks was a more attractive trait in people, and by the sound of things concerned mothers in Olympia Washington better lock up their sons, keep positive, Tony Oh, ha, ha, Tony! LOL! I am 60 years old and by no means universally attractive to men of any age including my own. And I'm not the most confident person in the world, but your words do give me encouragement.

It's true that if I didn't wear glasses, I would worry about the saddle nose a lot more than I do. A few acquaintances have noticed it, but many are surprised if I point it out.... I suppose there are people out there who assume I have used a lot of cocaine or something. But really it depends on the angle of view whether it might be noticed, and I'm thankful it isn't worse than it is. There's always the possibility of surgery someday, though that doesn't look promising, because of the expense and medical considerations.