Search:

Batman has always been my favorite!


😃 victoria

Dear Alysia and everyone on the forum that was close to Phil please accept my deepest sympathies. Phil was the first person to welcome me to the forum and he was so willing to share his story and...

I'm praying for Phil! He was the firs to welcome me and I'm sure many others to the forum. This is sad news. I'm sorry. I know there are a lot of people praying for him and sending him well wishes....

As for treatment I was off methotrexate for a month or so. My nose started to go crazy again so I'm repeating CT-scans of lungs and sinuses to see if I need to start treatment again. For me the...

I'm seeing a rheumotlogist. A pulmonologist. ENT and my PCP. I would love it of they were more connected. I'll often pass comments to and from. My rheumotlogist wouldn't fill out the form for SS....

Thank you for the replies. I hope I win, I could certainly use a chunk of money.


😃 victoria

I noticed my nose before I noticed anything else. Started as what appeared to be a bump but what was really the cartilage wearing away. It's not too bad. Only I could tell at first now other people...

I'm about to have a hearing in November. I've been out of work over a year. I used my savings. I left my job due to fatigue. It was severe I couldn't do anything. I have joint, muscle pain daily, my...

I was diagnosed 1 1/2 years ago. Limited disease. No kidney involvement. My nose was always the worse. I'm just off meds now but probably about to go back on due to repeating symptoms. Sinuses are a...

Praying for Phil! God bless him!


😃 victoria

Thank you! 😃


Sent from my iPhone using Tapatalk

Thank you- I've been off prednisone since January. My new symptoms began late February or March. This is when I first reported them to the doc who I've always had mixed feelings about. I was...

Hi I was diagnosed with Wegner's about 18 months ago. I was prescribed prednisone and methotrexate. At my last appointment with the pulmonary doctor he said my lung was almost completely healed. I...

I have a pulmonary doc and I see a rheumatologist. I'm part of an HMO. I haven't been to a doctor that specializes in vasculitis. I'm starting to think I should. What's your experience? Thank you.
...

Hi Lilly- thanks for sharing with me. I was diagnosed about a year and a half ago. Considering the size of the cavities in my lung and the damage to my nose it was probably festering for a while. I...

Thank you. I do have an attorney. I finally figured it better get one. I was asymptotic except for the fatigue but now I'm having lots of joint pain, back pain, knee pain. My hands and knees get so...

I applied a month after leaving work. My initial application was denied. Then I appealed that decision and still they denied me. The 3rd stage is this hearing. I don't know what happens after that. I...

Thanks! I was taking pred but stopped maybe 3 months ago? At least I feel more prepared I talk to my doc.


Sent from my iPhone using Tapatalk

It sure is nice to know I'm not the only one. Because I don't "look" sick I think sometimes people think I'm full of crap. Anyway enjoy Florida. I'm in Boston where we are still in the midst of the...

My ankles and feet were very swollen as were my lower legs. Sitting with my feet on the floor definitely made it worse. The doc said maybe the prednisone but at that time I was only taking like 5mg....

I left work last June. I couldn't work anymore it was just too hard. I applied for disability and was denied. My appeal was denied and now I'm waiting for a hearing. Have people had luck getting...

Lilly- what happened with your sinuses? I have the nose deformity. Sometimes I have swelling on the upper sides of my nose. I compare it to a plant roots. It has to be seen I guess I can't describe...

If I'm having symptoms while still taking methotrexate would that be considered a flare? Or more like treatment might need to change?


Sent from my iPhone using Tapatalk

Thank you. I've had a few scans and have another scheduled for April 8. The holes haven't changed. When I was diagnosed I was feeling fine except for the fatigue. That's why they went with...

Thank you- I'm still taking methotrexate so I don't think that's considered remission. If these are new symptoms maybe they mean the methotrexate on its own isn't doing the trick? I have an...