New to WG

[jola57]

Gary, welcome even at this fast pace. Were you at work???

[Doug]

Gary- Welcome to the forum! Living by a stream in New Hampshire sounds idyllic to me. The only thing I can imagine causing you to rush off would be a brown bear invading your larder!

[Rainell & Dakota]

Hi to all: My 17 yr old daughter, Dakota, was diagnosed just before she turned 15. Started getting sick 3 years ago in the 9th grade. Spent the summer bouncing around Doctor's offices, having numerous ear tubes, Seeing specialists, chest X-Rays, MRI's, Biopsies, Ultrasounds, Nerve testing (ouch-on the face), going to E.R.'s, riding in ambulances, having emergency surgery for a mastoidectomy, had left facial palsy due to the nerve damage in her ear, bone density scans, etc, etc, etc.
Finally getting diagnosed, she spent the 10th grade, bed ridden, home schooled, on I.V's and various meds. The 11th grade, saw her going to school Part Time using a wheel chair and her facial pasy recovered to about 98%. And during the 12th grade, she attempted to go back to school full time, walking. But that only lasted for a few months due to a flare up, she ended up going to school part time again, although keeping up with studies. With the great help of her Doctors, school counselor, principal, and our local state representative, she managed to graduate with her class this past June.
Still have not seen a remission, but she was just weaned from her infusions of solumedrol. Still on Cytoxin. She has some bone loss from the prednisone, osteoperosis in her spine, but she has gained back alot of strength in her muscles. Goes to Physical Therapy 2x a week. Still has problems breathing, and walking longer distances. But she has touched base with some younger WGers on her FaceBook. There is even an older gentleman, she met in her Physical Therapy sessions that is also has WG. It helps to talk to a support group. Our Social Worker at the University of Michigan tried to get her to reach out when we were first diagnosed, but she grew very depressed, and basically became very withdrawn. Being homebound, until we could get a wheelchair.
She is feeling pretty good now, but we are still playing with her Meds. Has her ups and downs. But since graduation, her spirits are so high, which helps.

[Luce]

Wow, I am so sorry to hear about your daughter's experiences but I love her determination to carry on her studies throughout. She has been hit very hard by this awful disease but seems to have taken it all in her stride which is excellent.
I was diagnosed 10 months ago at the age of 25 which felt a little unfair to be burdened with WG so young, but to be a teenager and go through all that she has must have been devastating for Dakota and also for you as her mum.

If she'd like someone else to talk to on Facebook please feel free to pass my profile details on to her Login | Facebook

May you both remain positive throughout her care and I hope her spirits remain high!

[Sangye]

Hi Rainell,
What a difficult story. Dakota has really been through the mill. Congratulations to her for graduating with her class. What a huge accomplishment!

How long was she on IV solumedrol?

I ask this next question of every new member, because it's the #1 most important factor to getting the best care : Does she see a Wegener's specialist?

[Doug]

Rainell & Dakota- Whew! We often note how different each of us has been affected by this disease, and in the differences in treatment. Curiously, your daughter comes onto the forum having met an actual weggie! Most of us have never met another weggie. I met Lisa Coffeelover July 14, 2009, 6-1/2 years after I came down with WG, and she was the first person with WG I ever met. Sometimes knowing other weggies is the best medicine for dealing with the miseries of the disease because, frankly, if you don't have it, you can't truly appreciate how you can have a potentially fatal disease for life and still, some times, appear "normal". Dakota is fortunate to know another weggie personally, but this forum is an excellent alternative because of the variety of experiences we all have had with the disease.Secondly, it's great to have you, a family member involved because it is good to have your perspective as well.

[Gary]

Sorry for running off, yep, was at work during lunch. Don't have access at home so I'm using the comp. at work. Don't get much time to post. Been on the meds for 3 years. Looking for and doing research for using natural foods and such instead of meds. If anyone has ideas let me know. funny thing is I don't feel sick, just tired.

[Jack]

Hi Gary,
Glad you were able to get back to us.
Having Wegener's and feeling well means that you are currently in remission as I'm sure you know. This can last for a very long time, maybe over 20 years, but you must keep a close eye out for symptoms indicating its return. Some people are able to maintain this condition with the aid of very few drugs or even none at all. Others still need high doses to prevent its return. It is a bit of a guessing game and the consequences of getting it wrong can be very serious or even fatal. For this reason, I would urge you to be very cautious about the use of alternative medication. See this thread - http://www.wegeners-granulomatosis.c...-remedies.html

[Martin Thomas]

Hi everyone (some familiar names and faces from other groups here I see!).

Aged 52 (tomorrow!) living in the beautiful Lake District in the UK with my partner and Newfoundland dog. I'm currently suspended from studying for my PhD due to this damned disease but hoping to pick up the pieces one of these days soon.

Dx'd in June 06 after 6 months of classic apparent ear infection / rhinitus etc. Standard chemo treatment for a further 6 months but simply got worse and disease spread to my right lung. Bronchus intermedius down to a pin hole in diameter. Started on Rituximab and after 18 months on would appear to have no active disease.

I now have permanent eye damage (steroid induced most likely), nerve pain behind both eyes and am almost deaf in one ear (opposite one to where this all started). Currently treated under the infamous Dr David Jayne at Addenbrooke's, Cambridge, UK and having surgery every 4 months to repair lung damage. Ear and eye sadly appear beyond mending but time will tell. Also having accupuncture in an attempt to alieviate headaches / tinitus. Early days but something's stirring!

[Sangye]

Hi Martin,
Welcome to the group! You and I were dx'ed the same month, and as is typical for Wegs, we've had completely different experiences! I'm so glad you have a Wegs specialist. That will save you a lot of nagging from me.

Maybe you already know this, but others might not : Acupuncture is great-- just make sure to tell your acupuncturist not to deliberately stimulate the immune system. You've got to go very slowly with it, don't do much at each session, or the Wegs will flare. Several months ago I saw a new acupuncturist (I moved from Arizona last fall). She's excellent, highly trained. But she didn't understand and/or respect the above limits. It wasn't until it was over that I learned she had done a full-blown immune-stimulating treatment. (I don't know which needles do what) The very next day I wound up in the hospital for a week with what we thought was pneumonia, but was really the beginning of a Wegener's flare. Great proof of the power of acupuncture to boost the immune system, though, huh?