my sister

[Lila]

Hello All!

I'm having trouble finding my old thread!
My sister had her visit at JHU today! All I can say is WOW!! She saw Dr. Levine and his associate. In all these years of her suffering she has NEVER met doctors so knowledgeable and KIND. When we walked out of there today it was like a weight had been lifted!
Dr. Levine confirmed that my sister DOES NOT have Rheumatoid Arthritis. She does have Wegener's. She has been getting weekly injections to treat RA, and she does not even have it. Dr. Levine upped her Pred to 40mg (Oh God, I dread this!) and also upped her Methotrexate (I forgot the dosage) and I think he gave her Plaquenil. I'm not positive about the last one. I will find out tomorrow. He was so positive. He said that she should only need to be on high doses HOPEFULLY for a few months. Once the inflammation has gone down she will need to get the trache out. We set up another appt. for 1 month and she will be seeing the ENT surgeon (Dr. Kim?) and Dr. Levine on the same day. Dr. Levine also took pictures of her nose. He says that she really needs to get the nose surgery ASAP because her nose has completely caved in.
Although we're not exactly thrilled that she definatly has Wegener's we ARE thrilled that she is being treated properly by the BEST doctors!
It was a very expensive trip up there!
We left yesterday, got a room at the Clarion (very nice there) and between that, tolls, gas, food, parking...we spent over $300. But it was def worth every penny. We scheduled the next appointment for later in the day so that we would not have to stay overnight.
BIG Thanks and HUGS to Sangye and everyone else who encouraged me during this whole process of getting her into JHU! Words cannot explain how thankful I am, and I KNOW my sis is too!

[AnnaG]

That's wonderful news that she will now have appropriate treatment! Now hopefully it will kick in fairly soon and she'll be feeling better.

[Lila]

Yes, thank you! This has been a great day!

[Sangye]

I am so relieved that she finally got there. And while it sucks she has Wegs, we already pretty much knew that. I'm really glad she doesn't ALSO have RA! That's huge!

Dr Kim is the ENT who sees all the Weggies. Very sweet doc, spends time with patients, very thorough. He runs really late unless you have an early morning appointment (no later than 9:30). You might wait 2-3 hours otherwise. Just be prepared.

Regarding the higher pred, I really think she should consider seeing a psychiatrist about a mood stabilizer. It's common to need one with pred. There's no need for her to suffer with trying to contain out of control brain hormones.

[jola57]

Lila, while Wegs is not a good news, not having RA is. I am so glad that you had a good visit. Hopefuly now Wegs will be controlled and you sis is well on her way to feeling better.

[elephant]

Lila, that is great news for the both of you. I am so glad she is on her way to great care and recovery!

[moyan]

Yahoo! The good news about WG is that it will now be treated properly! So glad you had that visit and sending a good luck hug to both you and sis!

[JanW]

Lila -- that's great news. I was worried about your sister and think about her often. I'm sure too that she will be happy to get her nose fixed, and obviously it's not just for the aesthethics -- it sounds like a pretty serious medical condition on its own. My ENT said that for some saddle noses they must fix them -- I don't fall into that category yet, anyway.

Did she get her trach because she has a stenosis? Or did she have some other trauma that made her unable to breathe?

[onatreetop]

I am so glad you got her there!!!! They are very nice and knowledgable. It is good to hear from you too.Was getting worried with all this weather and everything that is happening. My sinus/septum repair/ biopsy was yesturday and went well.Now I get to recover! Ha ! HA!
Again I am glad she has her meds adjusted. Theydid tell me when Iwent that they only use cytx when the kidneys are involved so her testing for that must have been good. Keep us near your heart!! We are all here for you.Hope the pred helps her feel much better but not to moody.

[elephant]

Glad you biopsy went well onatreetop. Hope you feeling better today.