ShellLeighScott
10-13-2020, 05:14 PM
Hello friends,
My name is Michelle from Phoenix, AZ. I have been on the whirlwind Wegener's adventure that started in January 2018 when I was 46 years old. I was diagnosed very early thanks to an amazing ENT doctor. Up until 2018 I had been living a fairly healthy life and had never had any diseases or daily prescribed medications.
Mine started with what seemed to be a major sinus infection that would not clear up with 3 rounds of different antibiotics. Right away, I knew I had never experienced anything like this and that something was just plain wrong! I had headaches, bloody nasal crusting, nosebleeds, facial pain and my teeth hurt so badly I thought they were just going to fall right out. I could not eat because it was really hard to eat and breath out my mouth at same time and I initially lost weight.
When I landed at my ENT he saw that I had a deviated septum and had restrictive air flow in my left nasal cavity. Many people have and live with this condition so my thought at that time was do I want to undergo surgery to fix the deviated septum or learn to live with it. However, something still did not seem right and I pushed for more testing (is this Valley Fever ~ common to Arizonans, do I have a fungus, why won't it just go away???). Initial testing for a fungus or some other bacterial infection all came back negative but I then got a call that my ENT doctor wanted me to go for one more test and I was game! I just wanted answers and honestly to feel better and normal again. I was a busy mom with a +full time job and did not have time for this! ha!!!
In March 2018 the test came back positive for the Proteinase-3 Antibody and my ENT said I next need to move on to a Rheumatologist and did so. By end of March was on my treatment plan of Methotrexate, Prednisone and Folic Acid with overall good results; which I still continue to this day. My doctor said I am so blessed to have an early diagnosis and based on all the reading I have done, I agree! I am so thankful and at this time mine has stayed isolated to just my upper respiratory system and not progressed to lungs or kidneys. There has been CT Scans, MRI's, Pulmonologist & Ophthalmologist visits and monitoring but I overall seem to have this under control with my current treatment. I also did get basal cell skin cancer and had MOHS surgery after my diagnosis too, of which I understand Wegeners patients can be at greater risk for skin conditions or skin cancer too. This also could be because I am an Arizona native with high sun exposure (without protection in my youth).
During COVID-19 I have been super cautious and work-from-home (thankfully) and I avoid going out in public (hubbie does all the grocery shopping ;)
For all the years I have had Wegner's I have had varying degrees of my bloods labs being out of wack, so I know I need to be very cautious and do not need to catch COVID-19 to top anything off. I also want to see what I can do for this on my own too and have taken on a healthier life style with my eating and exercise management and have lost 45lbs since I began in February. I hope this will lead to some positive long-term results for Wegeners too!
My current symptoms are this summer my joints (fingers, knees and hips) have started to be impacted for the first time. I still have nasal pain and teeth pain
from time to time and nasal crusting but no nosebleeds in one solid year. My eyes and ears are starting to become a little bothersome too; all of which I watch and discuss regularly with my many specialists. The hair loss from the Methotrexate just causes me to have really thin hair now and this comes and goes. I do also take over-the-counter- Biotin which helps at times. But it's a little unnerving to have hair just plopping out while sitting and I wonder HOW much more hair will I lose. While I know my Wegener's is not an extreme case and I am so heartfelt sorry to those with it much worse than me, it still has been a completely life changing event to adjust to.
My game plan for 2021 and what led me to this forum is that I honestly want to be off the medicines! At this point, I am not on any high doses (17mg Methrotrexate once per week, and 5mg Prednisone daily) but I don't want to be on them for the rest of my life. We have not gotten to a point yet where I have been called in 'remission' or 'inactive' and still remain in treatment that the Rheum doctor thought would be about two years and I am now past that initial time frame. I really am unable to go below 5mg Prednisone or the symptoms become strong but I know my Ophthalmologist and Dermatologist want me off it every time I have a visit. Once I can get off Prednisone and can be symptom free is when the Rheum doctor said they would next start weaning me off Methotrexate ~ but we have not gotten there just yet.
All of my doctors and specialists say that Wegener's is rare and they do not often see patients with it in their career or very few and I feel frustration because I want a better treatment plan that does not involve indefinitely taking medicines ~ they all have other negative consequences in their own right. After reading your post's I may find that the medication is part of my new life and maybe I am being unrealistic in this desire?
As I just completed my health care open enrollment and we have a new covered benefit of "2nd.MD Expert Medical Opinion"; I am hoping to get to a specialist/Rheumatologist outside of Arizona. Months back I think someone posted about a Wegener's specialist at The Cleveland Clinic! So I will definitely be reading through old your posts to find some names and hopefully get connected with another opinion on my future and perhaps a better or alternative treatment plan than I am on now.
In advance, thank you so much for the information and sharing that you have all posted and that will be my new hobby to get caught up on everything! I am coming here late but so happy to be here with you all now!
Peace and Blessings,
Michelle
My name is Michelle from Phoenix, AZ. I have been on the whirlwind Wegener's adventure that started in January 2018 when I was 46 years old. I was diagnosed very early thanks to an amazing ENT doctor. Up until 2018 I had been living a fairly healthy life and had never had any diseases or daily prescribed medications.
Mine started with what seemed to be a major sinus infection that would not clear up with 3 rounds of different antibiotics. Right away, I knew I had never experienced anything like this and that something was just plain wrong! I had headaches, bloody nasal crusting, nosebleeds, facial pain and my teeth hurt so badly I thought they were just going to fall right out. I could not eat because it was really hard to eat and breath out my mouth at same time and I initially lost weight.
When I landed at my ENT he saw that I had a deviated septum and had restrictive air flow in my left nasal cavity. Many people have and live with this condition so my thought at that time was do I want to undergo surgery to fix the deviated septum or learn to live with it. However, something still did not seem right and I pushed for more testing (is this Valley Fever ~ common to Arizonans, do I have a fungus, why won't it just go away???). Initial testing for a fungus or some other bacterial infection all came back negative but I then got a call that my ENT doctor wanted me to go for one more test and I was game! I just wanted answers and honestly to feel better and normal again. I was a busy mom with a +full time job and did not have time for this! ha!!!
In March 2018 the test came back positive for the Proteinase-3 Antibody and my ENT said I next need to move on to a Rheumatologist and did so. By end of March was on my treatment plan of Methotrexate, Prednisone and Folic Acid with overall good results; which I still continue to this day. My doctor said I am so blessed to have an early diagnosis and based on all the reading I have done, I agree! I am so thankful and at this time mine has stayed isolated to just my upper respiratory system and not progressed to lungs or kidneys. There has been CT Scans, MRI's, Pulmonologist & Ophthalmologist visits and monitoring but I overall seem to have this under control with my current treatment. I also did get basal cell skin cancer and had MOHS surgery after my diagnosis too, of which I understand Wegeners patients can be at greater risk for skin conditions or skin cancer too. This also could be because I am an Arizona native with high sun exposure (without protection in my youth).
During COVID-19 I have been super cautious and work-from-home (thankfully) and I avoid going out in public (hubbie does all the grocery shopping ;)
For all the years I have had Wegner's I have had varying degrees of my bloods labs being out of wack, so I know I need to be very cautious and do not need to catch COVID-19 to top anything off. I also want to see what I can do for this on my own too and have taken on a healthier life style with my eating and exercise management and have lost 45lbs since I began in February. I hope this will lead to some positive long-term results for Wegeners too!
My current symptoms are this summer my joints (fingers, knees and hips) have started to be impacted for the first time. I still have nasal pain and teeth pain
from time to time and nasal crusting but no nosebleeds in one solid year. My eyes and ears are starting to become a little bothersome too; all of which I watch and discuss regularly with my many specialists. The hair loss from the Methotrexate just causes me to have really thin hair now and this comes and goes. I do also take over-the-counter- Biotin which helps at times. But it's a little unnerving to have hair just plopping out while sitting and I wonder HOW much more hair will I lose. While I know my Wegener's is not an extreme case and I am so heartfelt sorry to those with it much worse than me, it still has been a completely life changing event to adjust to.
My game plan for 2021 and what led me to this forum is that I honestly want to be off the medicines! At this point, I am not on any high doses (17mg Methrotrexate once per week, and 5mg Prednisone daily) but I don't want to be on them for the rest of my life. We have not gotten to a point yet where I have been called in 'remission' or 'inactive' and still remain in treatment that the Rheum doctor thought would be about two years and I am now past that initial time frame. I really am unable to go below 5mg Prednisone or the symptoms become strong but I know my Ophthalmologist and Dermatologist want me off it every time I have a visit. Once I can get off Prednisone and can be symptom free is when the Rheum doctor said they would next start weaning me off Methotrexate ~ but we have not gotten there just yet.
All of my doctors and specialists say that Wegener's is rare and they do not often see patients with it in their career or very few and I feel frustration because I want a better treatment plan that does not involve indefinitely taking medicines ~ they all have other negative consequences in their own right. After reading your post's I may find that the medication is part of my new life and maybe I am being unrealistic in this desire?
As I just completed my health care open enrollment and we have a new covered benefit of "2nd.MD Expert Medical Opinion"; I am hoping to get to a specialist/Rheumatologist outside of Arizona. Months back I think someone posted about a Wegener's specialist at The Cleveland Clinic! So I will definitely be reading through old your posts to find some names and hopefully get connected with another opinion on my future and perhaps a better or alternative treatment plan than I am on now.
In advance, thank you so much for the information and sharing that you have all posted and that will be my new hobby to get caught up on everything! I am coming here late but so happy to be here with you all now!
Peace and Blessings,
Michelle