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[DAVEY8105]

Hi! I just had my second infusion today and the Dr. said it will take several weeks to know if it will work. I don't feel as sick right now as I did with the Cytoxan, just swollen hands and feet mostly. The eight infusions of Cytoxan i had didn't do much to stop the disease so, of course, now I'm scared the Rituxan may not work either. Just trying to stay positive and rely on my Dr.'s.

[debbie]

Hi Jenny, I am from Canada aswell, Edmonton, Alberta. I was diganosed in 2007 and have been the Cytoxan infusions and Prednisone ever since, WG has mostly effected my upper airway and sinuses. I am finding now that my ears are starting to bother me, but have been ignoring it hoping it will just go away. I don't have any ear pain, but there is alway like a pressure build up. Did you have constant pain right from the start in your ears?

[Jenny]

Hi Debbie. I had fullness feeling in my ear and then partial hearing loss (about two weeks and then deafness in that ear) then lots of fluid, excrutiating pain and blood. That all lasted for about 7 months and my ear and behind my ear still hurt but no fluid or blood. The deafness is permanent with me the WG destroyed the nerves in there too so the hearing will never come back Maybe ask your doctor if you can get a ct scan of that ear to see if there is a lot of inflammation in there and then they can up your prednisone. I don't want you to go through what I did. It has eaten away some of the mastoid bone behind my ear.

[debbie]

Thanks Jenny, I go back to the doctor in a couple of week and will have them checked out.

[jola57]

Hi Jenny, I'm from Mission, BC. I've had WG since Nov 2006, been on cyclo from dec 2007 to June 08 and now back in the dumps - lung lesions, blood in urine, tinitis (permanent ringing in my left ear), lowered hearing, sinuses, both feet parasthesis (can't feel them) - have I left out anything?, oh yes cramps in legs and hand and my eyes hurt. I keep lowering and upping pred depending on how I feel.
Doc's don't do much - I guess so little is known that each specialist is waiting for another to have me go back on cyclo. I'm not complaining I seem to be lucky and I feel good despite all. I just wish to keep it at the level it is at and not have any permanent damage. My ANCA is back above 200 and CRP and ESR well above normal.
Debbie don't ignore the ears, I believed my family doc that it was just an ear infection at the beginning and took to long to go on pred. Now I don't think I will always hear the ringing in my left ear..
Hugs,
Jolanta

[RCOSSIO]

Just got back results from CT scan no concern other than another scan of the jaw three months from now. Doc didn't think anything other than a benign bone lesion due to Fosomax. Stopped taking the Fosomax and the pain got better after my 2 weeks of antibiotics.

Will follow up with an ear specialist for the inflammation but the pain went away again after the antibiotics.

Will see how it looks 3 months from now!

[Jenny]

Good Luck to you all. It doesn't sound too easy to go on to Rituxan in Canada. My rheumatologist said it is really hard to get a hold of. Cytoxan is doing a bit of good but I'm still bad. Do any of you have joint involvment? Richard I can feel bumps on my jaw and temple area but my doctor didn't really say much about it.

[Jenny]

I was trying to remember your online name in my reply about your jaw. Sorry...my brain isn't like it used to be

[andrew]

Originally Posted by Jenny

Good Luck to you all. It doesn't sound too easy to go on to Rituxan in Canada. My rheumatologist said it is really hard to get a hold of. Cytoxan is doing a bit of good but I'm still bad. Do any of you have joint involvment? Roscoe I can feel bumps on my jaw and temple area but my doctor didn't really say much about it.

What about getting Rituxan from an oversease online pharmacy (a real one )?

I'm don't know about laws in Canada that govern importing drugs but here in Oz, as long as it's not a large amount and/or I have a prescription I can produce then it's all good.

[RCOSSIO]

Jenny,

Yes joint pains are constant but not bad. My Rheumy up my pred by 10mg but now insist on motion exercise and unless my sed rates go up, otherwise go back above the normal of 31 then he will adjust.

The jaw pain went away with the Lyrica as it was affecting what they call the avleolar nerve. Will let you know after 3 months after the CT scan how my jaw looks again.