Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[pberggren1]

Not too sure TN. But you are on the right track to get a Wegs doc involved ASAP. I would not be without mine now.

[HopeinTN]

I found the following on the VF website, so I'll see if I can get in. I've seen his name on here before.

CAPIZZI, STEPHEN A., M.D.

Thanks.

[Al]

I found the following on the VF website, so I'll see if I can get in. I've seen his name on here before.

Let us know how the guy accounts for himself!

[HopeinTN]

Also, does anyone else think that 4 weeks is too early to take me down to 20mg of prednisone daily from 30mg, while on 100mg daily Cytoxan?

[delorisdoe]

I can't remember if I took my meds after eating breakfast or not. I feel like I can't remember anything lately. I just picked up a pill box at the drugstore, so I hope that helps.

So, I really don't think I took it, but should I take them now in case? If I did, would double dosing hurt me?

Thanks, and I'm too young to forget my meds...or need a pill box.

Any time I ever missed a dose my body let me know within a few hours...the pain would become horrible-i assumed from pred withdrawl. I never had to wonder if i missed a dose, it was clear

[Al]

Also, does anyone else think that 4 weeks is too early to take me down to 20mg of prednisone daily from 30mg, while on 100mg daily Cytoxan?

Should be fine, if properly monitored.

Al

[HopeinTN]

I contacted Dr. Capizzi's office (Physician from the VF website in Nashville TN) and whiel talking with teh appointment scheduler she said that he is not a vasculitis doctor or Wegs specialist but a pulmonologist. Needless to say, I didn't make an appointment. I have a great pulmonologist at Vandy and I was just wanting a consult with a specialist to make sure everything is in line. Oh well.

Plan B. Start taking notes and coming up with specific questions for my rheumatologist. Such as, 1- are my knees/legs hurting so bad because of meds or why would you think osteoarthritis right off the bat and not Wegs, 2- what's up with the sores on my scalp getting worse and why would you think this is eczema and not Wegs. That should be a good start.

I'm now on week 5 of the meds.

[Sangye]

I'm going to lean on you to get a Wegs specialist involved. Your rheumy has already blown off your leg pain, meaning either he isn't taking you seriously or he isn't skilled enough with Wegs, or both. Is there no way you could travel to a major center to establish yourself as a patient? They would direct your care and your local doc would carry through on it.

If you get a VF consultant, you have no way to ask questions. So if your rheumy doesn't ask about your leg pain, they never know.

I'm nagging because I know what Wegs can do, and how quickly it can go south. And we've lost too many members as a result of inadequate care.

[HopeinTN]

I appreciate the nagging. Thruth is, my sister hasn't been so supportive, which is odd since she has been suffering with Chron's for many years and lots of surgeries. Everytime I mention seeing a specialist she shuts me down with "you are fine and they are on top of it so stop worrying and stop reading about it online". She makes me feel like a worry wart and that I'm blowing everything out of porportion. It's like no one can be sick but her. It's so hard to deal with and maintain a good relationship with her.

I'm staying positive but I want to learn as much as I can so I know what to watch for but she doesn't see it that way. It really breaks my heart and makes me feel so alone. I have a boyfriend but he also doesn't seem to understand what I have or how sick it can make me if I don't stay on top of it.

My Rheumy is a resident but I also see the attending each time and he has been around and seems to be very good. The resident is teh one that mention the OA and the Eczema. I may shoot the attending Dr. an email and get his thoughts.

The closest Weg's specialist is in Cleveland and that's not all that close to Nashvegas.

THANKS SO MUCH!

[delorisdoe]

I have had so much miscommunication between residents and attendings this year it drives me nuts. My wegs doctor is not in the room with them when they first see me and I think that they go back to him with their report and if they forgot to ask something or check something they pretend like they did. At least that is how it seems to me sometimes. Earlier this year I had an unrelated problem and saw a surgeon and his team of med students and residents...it was a completely different experience. He was in the room the entire time taking notes on what answers I was giving to the residents. If they forgot to ask something he would ask it himself. Funny thing is when I went for my follow up with him he was called away to do a surgery and I was seen only by one of his residents who asked me strange questions, gave me strange answers to my questions and I left so confused. When I went to my wegs specialist for my regular weg appt his resident asked me about the unrelated issue and when I told him what the surgical resident said he reported what he thought he heard me say to the attending weg specialist and well he did not report what I said properly and I was sent for some unnessasary tests.

I think what I mean to say here is that residents can be great but they sometimes let things get lost in the translation and that drives me nuts.