just diagnosed and got lots of questions!!

[annekat]

Thanks, James. I hadn't really thought about anyone having secondary vasculitis until a friend with Lupus, when I told her what vasculitis means, said "oh, well then, I have vasculitis, because I have inflamed blood vessels." I couldn't really argue with that, since I know little to nothing about lupus. But in retrospect I was a bit annoyed because the implication seemed to be since I don't have lupus, but just have vasculitis, I must not have as serious a condition as what she has. In fact, I have WG, a less serious case than some, so far, but WG nonetheless... There wasn't enough time in the conversation to really get into it and make an impression as to the potential seriousness. And I would have liked to tell her that I don't think lupus is considered one of the Vasculitis diseases, even though it is a serious autoimmune disease.

[Dan27]

Sorry to hear you are suffering with WG. I was diagnosed in November of 2008 by lung biopsy. 5 to 10 years on mtx seems like alot to me. I was on mtx for about 6 months and then switched to cell cept. I was being treated locally until my Dr. called and said he didn't know how to help me any longer. He referred me to The Cleveland Clinic where I am still being treated. The medication that has helped me is rituxan, it is done by I.V. with the dose 2 weeks apart every 8 to 9 months. I am currently in remission because of the rituxan. The meds I take make me feel tired all the time, but other than that I feel good. I was 57 years old when I was diagnosed.

[drz]

Hi I agree it sounds a bit extreme, i need to look into it a little more, he said they dont usually offer it but he will make an acception, i have been really messed around, and if id of been listened to earlier, who knows i may be able to hear a little more.

From what i understand, they take only minutes to do and can be removed just as easily in the future should they not work, the bone anchored ones will fit in with my lifestyle a lot better, but we'll see ive got til after christmas to think about it and see how i get on with my sexy over the ear ones!!

I need to consider the risks with my medication too and healing, but will leave it a while, my heads still spinning from everything else.

When I got my BAHA the staff told me they were given to people with serious conduction loss through regular hearing mechanism and also for people with history of chronic ear infections that can't handle regular haring aids that block the ear canal because ofri9sk of infections. The BAHA aid doesn't cause the moisture buildup that my regular behind the ear mold does. The amount and kind of hearing loss you have will determine what type of aid is best for you. It took three months for bone to heal around the titanium implant screw before they gave me the snap on healing aid. It took the doctor who did the surgery two minutes to decide it was appropriate for me but the hearing evaluations took a couple hours or so first. It is a great improvement of being deaf. There are a couple different types of surgery to implant the screw. Mine removed the hair follicles for the area on inside of skin which causes a bald spot the size of a small coin and numbness in this area which also causes some itching but otherwise the operation is rather simple. You can look at some videos about this on Youtube if you search for them.

[Dan27]

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

[drz]

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

I loss my balance when WEGS took my hearing in right ear so my balance problems are from Weg damage, not meds. The meds I took for neuropathy did a number though on my balance and coordination and some other meds can do that too.

[annekat]

I lost my hearing due to fluid in my inner ear. My ENT put tubes in my ears and that solved the problem. My balance is still terrible probably from the meds.

Sometimes it is that simple. My ENT said my ear drums are way caved in and it wouldn't work to put tubes in. Next time I see him I'll have to ask for a better explanation of why it wouldn't work. He had considered tubes earlier, before we knew I had WG, but hesitated because of holes in the drums that hadn't healed or scarring that was too thick. All that was from a severe bilateral ear infection that may have been the start of WG. I'm glad tubes solved the problem for you.

[MCC]

hi OP, where do you live?

Dr Jayne at addenbrookes in cambridge is a specialist in wegeners. he was my doctor when I was in the UK and now I'm back overseas my doctor here consults with him sometimes (there are no wegeners specialists here).

i dont understand why they would keep you on medication for 5- 10 years?? this seems extreme.

As to what life is going to be like for you ongoing, it varies with everyone. I was diagnosed 3 years ago now and i have been off medication for one year. I am one of the fortunate ones in that I feel very well and life is normal. I am careful to look after myself as i always feel the cloud of wegeners hanging over me. I eat a lot of raw foods, i exercise (running) and try to avoid stress.

[jsmith]

Hi I live in gloucestershire, south west england, cambridge isn't too far away from me.

I have also got tubes in my ears, but this has not helped my hearing :-(

I have seen my consultant today as my symptoms have worsened, they still arn't really painful, but i have the pressure back behind my eye, sinus pain and blood when i blow, and my ears are about to go to town i think!

She is sending me to have iv pulse steriods, tomorrow, tuesday and Thursday next week, ive not heard of this before, im still on 55mg of pred a day, what are your opinions people?

Thanks

[jsmith]

oh and i have got really really shakey, hands mainly, do you think that might be the MTX or something else?

[annekat]

oh and i have got really really shakey, hands mainly, do you think that might be the MTX or something else?

I had shaky hands while on CTX and still a little while on MTX, but it has lessened.... I'm wondering if it was the pred, since I'm on a lot less of that than I was.