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Thread: What does Cleveland Clinic provide that local doctors do not?

  1. #11
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    If it's found you cannot take Imuran, you could take methotrexate. It has worked well to keep my disease activity under control since stopping CTX. It carries some risks regarding liver function with long term use, but that can be monitored in blood tests, and it is better than staying on CTX. I think all the meds carry some risks and not everyone can take all of them. Best of luck in all of this.
    Anne, dx'ed April 2011

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    The test is to be sure you the necessary enzymes to process the drug adequately. It can take awhile to get the test results so I was started at a very low dosage before the results were available. My doctors said that would quickly verify if I could handle the azathioprine OK. I have not had any problems with it except it does elevate your liver tests so I had to cut back on a statin drug that is also processed by the liver.
    Last edited by drz; 08-16-2015 at 09:00 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    handle the azathioprine OK.

    had to cut back on a statin drug that is also processed by the liver.
    My cholesterol whent through the roof when I started treatment. I had 14 prescriptions at the time so no telling why. I had nasty reactions to statins as soon as I switched from cytoxin to azathioprene. So now I'm just living with the high cholesterol.

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    Well, a year later I finally made an appointment. I'll be seeing Dr. Villa-Forte. It's a long way to travel for a one hour visit but I will feel better knowing that I'll be seeing an expert. I like my local doctors a lot but I don't feel like I have a genuine "team" in place.
    Can you tell me what I need to do for this appointment? What do I bring, all of my records? They did not ask for anything.
    Thanks!

  5. #15
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    You may want to take an autobiographical case history (symptoms at onset, initial therapies and response, flares, etc.), current medication list, and most recent lab reports. This will help provide structure to the appointment.

    I see Dr Villa Forte. She's great. She will listen and make sure she understands you. She'll also explain her treatment regimen. All she sees is Vasculitis patients. She does general medicine on her annual mission trips to Latin America.

    Let us know how it goes.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. #16
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    Quote Originally Posted by Pete View Post
    You may want to take an autobiographical case history (symptoms at onset, initial therapies and response, flares, etc.), current medication list, and most recent lab reports. This will help provide structure to the appointment.

    I see Dr Villa Forte. She's great. She will listen and make sure she understands you. She'll also explain her treatment regimen. All she sees is Vasculitis patients. She does general medicine on her annual mission trips to Latin America.

    Let us know how it goes.
    I am just curious how it all works. Does this mean that they do not need the medical records, or that they will get them some other way? Carrying around one's entire medical records to give to new doctors, or deciding which ones are pertinent, seems like a daunting proposition. In any case, csjknits, congrats on making the call and getting the appointment set up. I wish I could see Dr. Villa Forte.
    Anne, dx'ed April 2011

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    Thanks, Pete. I'll make sure to have my labs done right before then so I have current information. I'm looking forward to hearing what she has to say. Since I started treatment I've been really lucky (knock wood!)--no flares so far. My ANCA is high, though, and I keep getting sinus infections, so it will be good to get her opinion.

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    I was surprised--they didn't seem to want any records. They did ask for my primary, but they did not ask who is treating me for this. I asked if I need to bring anything and they said no. I'll bring it anyway, though--at least the most current labs. I'm sure they can get in touch with all of my doctors after the visit as well.
    I am lucky that we live only a few hours away from the clinic. I'll report back after I see her.
    Corrie

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    If CC is like other major research/care hospital systems, Mayo for one, they will do their own workups & their own dxes. They MAY consult your previous docs if there are questions, but since you will be in better hands for the most part, they are more confident in their own. Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  10. #20
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    Quote Originally Posted by annekat View Post
    I am just curious how it all works. Does this mean that they do not need the medical records, or that they will get them some other way? Carrying around one's entire medical records to give to new doctors, or deciding which ones are pertinent, seems like a daunting proposition. In any case, csjknits, congrats on making the call and getting the appointment set up. I wish I could see Dr. Villa Forte.
    Thanks to HIPPA, you can sign a release form and the docs at CC (or any other hospital) can get on-line real time access to your existing records.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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