To everyone **PLEASE READ**

[gurinbasra]

Hi Michelle,

I was diagnosed with WG in 2007 and just before that I had some hearing loss. However, just as I was diagnosed and started up on my treatment, I completely lost my hearing in my left ear and ever since I've been hanging on to my right ear. Your uncle needs to see an ENT specialist or at least an audiologist who will do a hearing test and tell him whether or not it's permanent hearing loss. My left cochlea was damaged so much that the hairs are completely gone - hence I can no longer hear - they call this sensorineural hearing loss and it's permanent. Your cochlea is actually a nerve just like your spine which is actually formed in the fetus within the first three months so once destroyed it can't be "fixed" (there is stem cell techology but just not available yet!). If the ears just have an infection (caused by WG) and the middle ear is involved - meaning the ear drum and those bones just behind it, they call that conductive hearing loss which can be fixed - eventually! All of this can be determined by just a hearing test and an ENT specialist can give you better information.

I now wear a hearing aid on my right ear, but it's not the same. I was told from the beginning that my hearing loss was permanent and yet (even to date) I keep up the hope that it will come back because it's been very difficult to accept this disability in life - it really is debilitating - simply to not hear! The only hope is that if your uncle losses all his hearing, he won't ever be deaf - he can always get a cochlear implant - but that's a whole other message.

Let me know how he's doing, make sure you get the best possible ENT or ear doctor who can work with the WG specialist as this was key to determining when the WG was under control. I still struggle with more hearing loss every time I get a flare up so it's a never ending struggle for me. If you or he needs any support or more info, be sure to contact me.

Good luck
Gurinder

[poochy29]

Hi sangye,thanks for welcoming me and posting a reply,i think as long as my uncle knows he maybe get it back it will keep his spirits up so thank you for your information.

[Roberta]

hello!
My name is Roberta, age 58. I was diagnosed with c-anca vasculitis Dec 14,2010. I think I had it longer 2 years probably. My primary md thought the microscopic blood iin urine and protein was not a big deal. He thought lymes, but was negative. I did have the purpurpa rash on legs off and on and the joint pain got worse in the fall of 2010. My rheumaotologist said it is wegeners but it has affected my kidneys 25-35% function now. I started with cytoxan 150mg daily and prednisone 80mg daily on dec 18 and bactrim daily. I also am on atenolol and lisinopril fof b/p. Take prilosec, ambien also. I have the moon face already from the prednisone, haven't really gained a lot of weight yet, it is fluctuating. I already wear a hearing aide left due to previous surgery in l973. My md Nephrologist states that hopefully I will have 50% kidney function after 6-9 months on cytoxan and prednisone. Does any one get the shakes from prednisone or a shivering like sensation from either of this drugs???? My blood sugars are also something starting to climb. I need to watch my diet more----oh boy!

Smile,
Roberta

[vincelv]

yup i get the tremors sumtimes in my hands from pred..but not bad..im finally getting to reduce my pred..i got to lower to 50mg yeserday..and after 2 weeks ill beable to go down to 40 mg..heck yay..at 80mg your apitite is going to be monsterous..not only will water retention get you the apitite too..or thats how it was for me

[jola57]

Hi Roberta and welcome. Yes, i too have the pred shakes, even on 4mg, but I used to get them often at 60mg. Your treatment is the "regular" regimen for wegs. I don't have kidney involvment and will leave that part to others who do. It is early yet, but you should be seeing results soon, as in lessening pain and kidneys getting better. I hope it is soon.

[Roberta]

Andrew, yes I have been on 80mg daily with the prednisone and cytoxan 150mg daily since Dec. 18. My appetite is not monstrous, not alot of weight gain so far, just the moon face and increased irritability by far. The thing that has me concerned if I can afford this illness after my cobra health insurance runs out on April 2. I can not work now. I feel all I do is complain!
My mom is a challenge and is 82 and lives a lone, and my sister is going through chemo for lung cancer and I am very close to her. She is only 53, never smoked a day and had surgery in Dec 2010, removed her left lower lung for this. So my problems are not as bad! My stools are not always black, it just seems so after I take the cytoxan. I did mention it to the neprhologist and I am on Prilosec, just increased to twice a day. I was wondering if the Ambien 10m (for sleep) is adding to the shakes and dizziness???

Roberta

[elephant]

Ambien can make you sleepy in the morning, with all the other medicines that you take it is hard to make that call...which pill is causing which side effect. Did the dizziness and shakes start after the Ambiem?

[Sangye]

I think it's pretty scary that you've been on 80mg pred for 1.5 months. That's way too long at such a high dose. I'm afraid you might have upper GI bleeding as a result. It often shows up as only dark (old blood) stools on and off. You need to get into a doctor tomorrow to test for occult blood. A PCP can order the test. Upper GI bleeding can be deadly because you're losing blood silently. I'm not sure that prilosec is enough to protect the stomach from such a prolonged use of 80mg pred.

As far as insurance, since you can't work you should apply for disability immediately. Someone started a thread recently and I posted what I've learned.

[Roberta]

I have already applied for ss disability they said it takes about 5 months to get approved, if I get approved.
I was hoping I could get it before the insurance runs out in April, WILL SEE!!

Yes I will check with my md about occculting the stools! The nephrologist said I would be on these meds for about 6-9 months. So I'm thinking I will be either very healthy or dead! I go back Feb 23 and have more blood work before I go that day! Such an optimist---I am! I feel like I am whining alot! Thanks for everyone's feed back.

Smile,
Roberta

[Sangye]

SS Disability takes at least that long to get approved, but doesn't cover your first 5 months of disability. So if your application says Jan 1 as your date of disability, you won't get benefits until June. That's assuming nothing goes wrong with being approved. A very high percentage of people are routinely denied even though they qualify. I hope yours goes through without a hitch. Mine did, so it's possible.