Which specialist/clinic?

[Sangye]

The plane tickets to Cleveland are pricey and Utah is less so, but still more than I want to spend on this stupid disease.

I understand.... Instead of thinking that you're spending the money on the disease, maybe think that you're spending it on your life. Makes it feel better, doesn't it? You are worth it. And you're the Momof3, which means you are 3 times more valuable. Get the best care for yourself. You deserve it. You'd do that for your kids, right?

[Momof3]

Yes Sangye, you are right, I am worth it. I just get frustrated with the amount of time and now $$ I have to spend trying to battle this. I am tired and want a break, but just keep plugging along hopefully on the way to remission. I got a voice mail from my rheumy's nurse that they won't do a "second opinion" consult until I am seen by the other MD. I have an appointment with my local one in 2 weeks so will wait and talk with her. I think we are needing to decide if the methotrexate is working or not and if not what next. I was hoping Dr. Langford would be helpful with that.
There seems to be different thoughts on treatment, less toxic for long time or more toxic quickly and shorter. I think my MD was hoping for less toxic for long time but I am not ok with that if silent damage is happening. Problem is, it's silent so how do we know? It would be nice to trust that they know what they are doing, some of that is just being a nurse, we never trust doctors until they prove themselves.
Thanks for listening to my ramble.

[elephant]

Momof 3, hoping you get to see Dr Langford soon, and she will let you know if your getting the appropriate treatment and might even add some other meds or other. When I went to see her she wanted me to check my urine with the dip sticks weekly to make sure my kidneys were not failing. At that time I was not in remission.
I understand how frustrating this is, I actually had family members come down here ( had to fly) and help me for a few weeks and at one time a couple of months.
You can ramble on as long as you like, we are here for you.

[JanW]

Momof3 I think that a lot of the damage is not completely silent if you know what to look for. Some organ damage is, but if you are getting bloods and urine done frequently enough, there are lab values that can check for that. As you say, your recent PFT might indicate a problem. Then, as well, for weggies, a huge one is simply how you feel. Good physicians have a tremendous amount of respect for that (and bad ones are often the flip side, telling you that the 'numbers' look fine, so nothing could be wrong). With WG you really have to listen to your body and not live in a state of denial (hard I know). This has been easier for me having doctors that spring into action at the drop of a hat (e.g. when I had a rash -- that cleared up in about 10 days on its own -- my rheumy saw me the day after I called him and wanted me to book the derm the same day, even though he thought it wasn't WG related), so they really make me feel as though everything that happens to me is potentially very serious and needs to be fully checked out.

I hope you get in to see Dr. Langford or Koenig. I think you will be in much better hands with a specialist.

[Palmyra]

I agree with all of the above, but I am concerned about your status as you wait for that appointment with Dr Langford. 20% decrease in lung function is significant.

My daughter sees Ulrich Specks at Mayo, as her initial symptoms were pulmonary and her local doc referred her there. All the clinics are 'huge', but tend to work on a collaborative model. We found Mayo to be very efficient, much more efficient than any other hospital I have ever seen, and you are not at all 'run around or a teaching case' at any of these institutions.

Good luck to you, and keep us posted

[Momof3]

OK, I have an appointment with Dr. Langford and also one with Dr. Cartin-Ceba at Mayo (he works w/Dr. Specks) for early February. I need to figure out how I want to coordinate with my local MD's. If I want to support the local rheumy w/ Dr. Langford or go to Dr. Cartin because my lungs are my affected site. I just want to be sure that what I am on for treatment is correct, and based on what I read on this site I don't think it it. I also want a plan for what to do if I have a flare as my local rheumy is very restrictive and turfs me off to my PCP if it isn't a scheduled appointment.
Anyway... thanks for all the support/help. I have the appointments made and will decide next week which one to keep and which one to cancel. Hopefully 2011 will be the year of remission and getting off the prednisone.
Merry Christmas everyone.

[Sangye]

Sangye will now take you off her "Nag Every Hour" list.

[elephant]

So happy to hear you are seeing Dr Langford, she is my doctor. You won't be disappointed!

[Jaha]

Momof3,

It is very hard to find a PCP that will not hold you in the group that they are in. They will bounce you back and forth within their own practices. I let my rheumy,a specialist in WGs drive. She coordinates all my care and my PCP gets letters explaining whats going on. the PCP doesn't really get the picture of WGs but at least she's not sending to pulmony's or onocologist in her group treating me for asthma or pneumonia anymore. I get my lab test locally and have them faxed to CC and occasionally they screw them up too. The only thing my PCP manages is all the regular drugs I was on before I was dx'd and sometimes she ask me why I am on those(ones she has rx me). So if you possibly can let the specialists manage your case. Wishing you all the best!
Jana

[vdub]

I am also from WA, but on the dry side. I will have my first apt with Dr. Koening at the Univ. of Utah Vasculitis Center on 7Feb. Since I have pituitary involvement with the wegs, I will also be seeing a neruologist on 10Feb. I'm looking forward to it....