rebekah
06-30-2015, 09:48 AM
I really enjoyed this symposium! I got to meet Mike and hang out with Victor again! I also met a lot of awesome young people my age... it was a great time!
Sorry, it took a little while to post the notes, but I'm off work today and am just sitting in bed watching Netflix with my holter monitor after visiting the cardiologist this morning, so I figured today is a perfect day to type them! I decided to post the notes in bullet points this time to hopefully avoid rambling.
WG Breakout Session:
In this session, everyone asked a bunch of questions and Dr. Merkel and Dr. Lebovics answered them.
-We talked about how radiology is an important part of diagnosis and treatment. Doctors try to balance doing x-rays but not over doing them. X-rays are good, but CT's are incredibly better (but you don't want to do too many because of radiation). When getting a CT scan, Dr. Merkel said we rarely need the IV contrast dye for WG. You should get x-rays done when there's a question of what's going on. This disease ranges from the mildly annoying to very bad, and it's good to know what's happening in the chest. You should have a baseline chest x-ray (if you have lung involvement); if you have nothing going on – great, and you might not get another one for a few months. If you have a nodule, etc. you'll probably repeat it in 3-6 months after treatment to make sure it shrunk. The reason for a baseline is that you want to know where it's at when you're doing well, so if a year or two later something goes wrong, they can tell what's different (a new nodule, one grew, etc.)
-MRI's are good (no radiation), but they aren't good for certain parts of the body
-Trying to decide between active not active
remission: no active disease
flare/relapse: a change from remission to active disease
-ANCA test isn't recommended to decide if flaring
-Sed rate and CRP are not the only things used to monitor disease. Doctors also do other blood tests (such as creatinine and AST and ALT) and check for blood and protein in urine. Your symptoms and how you're feeling are important! It's really a combination of lab work and your symptoms. The biggest thing mentioned, was that we know our body so if we feel something is wrong, we're probably right... trust your body and let your doctor know when you aren't feeling well.
-Fatigue is part of the disease. If it gets worse it could be a sign as to what's coming. Some things that might help with fatigue: establishing an exercise program, restorative therapy, energy conserving strategies...
-Infertility/IVF: PLAN – people can still get pregnant and have kids, but plan and don't get pregnant while on a high dose of prednisone/steroids, cytoxan, and meds that can cause birth defects
-Cataract surgery: you can have it, just find an experienced doctor and work with your rheumatologist; you don't want to be on high dose steroids when getting it
-Hearing loss: WG is a disease of respiratory tissue and there's respiratory tissue in the middle ear, thus it can cause hearing loss. It is recommended to get a baseline hearing test and then follow over time as needed.
-Nerves: the damage can be sudden; once a nerve is gone there is a 90% chance of not getting it back
-Definitely report taste and smell issues. A bad taste in your mouth is a side effect from Imuran
-WG causes kidney damage = increased risk for gout. It’s important to have urinalysis done regularly since kidney damage can occur fast and without symptoms (personal note: if you have kidney damage, I recommend getting urine test strips that you can use at home)
-Vaccines are GOOD. You should be vaccinated – flu shot every year, pneumonia every 5 years, shingles (still trying to decide the best time to get it in combination with other meds, don't want to receive it while getting Rituxan). NO LIVE VACCINES THOUGH!
VPPRN:
You can learn about research being done and clinical studies to take part in at the sites below. If you choose to register, you don’t have to give all of your information, just what you feel comfortable sharing.
Vasculitis Patient Powered Research Network (http://VPPRN.org)
https://www.rarediseasesnetwork.org/vcrc/registry/
Websites:
Lab Tests Online (http://labtestsonline.org): you can type in the name of a lab test and it will give you information about the test and the acceptable range
Khan Academy (https://www.khanacademy.org): you can take courses online for free - they have a bunch of subjects including health and medicine, math, science, art, etc.
Apps:
Patient Journal
Breathe2Relax
Pain Coach (WebMD)
Books:
“Resiliance” by Steven Southwick
“The Mayo Clinic Guide to Stress-Free Living”
“How Doctors Think” by Jerome Groopman
I hope everyone is doing well!! :)
Sorry, it took a little while to post the notes, but I'm off work today and am just sitting in bed watching Netflix with my holter monitor after visiting the cardiologist this morning, so I figured today is a perfect day to type them! I decided to post the notes in bullet points this time to hopefully avoid rambling.
WG Breakout Session:
In this session, everyone asked a bunch of questions and Dr. Merkel and Dr. Lebovics answered them.
-We talked about how radiology is an important part of diagnosis and treatment. Doctors try to balance doing x-rays but not over doing them. X-rays are good, but CT's are incredibly better (but you don't want to do too many because of radiation). When getting a CT scan, Dr. Merkel said we rarely need the IV contrast dye for WG. You should get x-rays done when there's a question of what's going on. This disease ranges from the mildly annoying to very bad, and it's good to know what's happening in the chest. You should have a baseline chest x-ray (if you have lung involvement); if you have nothing going on – great, and you might not get another one for a few months. If you have a nodule, etc. you'll probably repeat it in 3-6 months after treatment to make sure it shrunk. The reason for a baseline is that you want to know where it's at when you're doing well, so if a year or two later something goes wrong, they can tell what's different (a new nodule, one grew, etc.)
-MRI's are good (no radiation), but they aren't good for certain parts of the body
-Trying to decide between active not active
remission: no active disease
flare/relapse: a change from remission to active disease
-ANCA test isn't recommended to decide if flaring
-Sed rate and CRP are not the only things used to monitor disease. Doctors also do other blood tests (such as creatinine and AST and ALT) and check for blood and protein in urine. Your symptoms and how you're feeling are important! It's really a combination of lab work and your symptoms. The biggest thing mentioned, was that we know our body so if we feel something is wrong, we're probably right... trust your body and let your doctor know when you aren't feeling well.
-Fatigue is part of the disease. If it gets worse it could be a sign as to what's coming. Some things that might help with fatigue: establishing an exercise program, restorative therapy, energy conserving strategies...
-Infertility/IVF: PLAN – people can still get pregnant and have kids, but plan and don't get pregnant while on a high dose of prednisone/steroids, cytoxan, and meds that can cause birth defects
-Cataract surgery: you can have it, just find an experienced doctor and work with your rheumatologist; you don't want to be on high dose steroids when getting it
-Hearing loss: WG is a disease of respiratory tissue and there's respiratory tissue in the middle ear, thus it can cause hearing loss. It is recommended to get a baseline hearing test and then follow over time as needed.
-Nerves: the damage can be sudden; once a nerve is gone there is a 90% chance of not getting it back
-Definitely report taste and smell issues. A bad taste in your mouth is a side effect from Imuran
-WG causes kidney damage = increased risk for gout. It’s important to have urinalysis done regularly since kidney damage can occur fast and without symptoms (personal note: if you have kidney damage, I recommend getting urine test strips that you can use at home)
-Vaccines are GOOD. You should be vaccinated – flu shot every year, pneumonia every 5 years, shingles (still trying to decide the best time to get it in combination with other meds, don't want to receive it while getting Rituxan). NO LIVE VACCINES THOUGH!
VPPRN:
You can learn about research being done and clinical studies to take part in at the sites below. If you choose to register, you don’t have to give all of your information, just what you feel comfortable sharing.
Vasculitis Patient Powered Research Network (http://VPPRN.org)
https://www.rarediseasesnetwork.org/vcrc/registry/
Websites:
Lab Tests Online (http://labtestsonline.org): you can type in the name of a lab test and it will give you information about the test and the acceptable range
Khan Academy (https://www.khanacademy.org): you can take courses online for free - they have a bunch of subjects including health and medicine, math, science, art, etc.
Apps:
Patient Journal
Breathe2Relax
Pain Coach (WebMD)
Books:
“Resiliance” by Steven Southwick
“The Mayo Clinic Guide to Stress-Free Living”
“How Doctors Think” by Jerome Groopman
I hope everyone is doing well!! :)