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Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Hello, My name is Brittany. I’m a 31 year old Pennsylvania girl who got diagnosed Tuesday, March 20th, 2018.
My story isn’t much different than the majority of people in that, since my first symptoms were bad enough to get my attention, it’s been a nightmare getting diagnosed.
A tiny bit of back story-
I was born premature and have very mild Cerebral Palsy. Because of this, I live with general pain and joint stiffness, fatigue easily, etc.
As the years have gone by, I’ve struggled with feeling terrible. I just assumed it was age and my CP- not going to the doctor, thinking it wasn’t anything major.
The things I noticed since about 15 years old were: Joint Pain & Muscle Pain, Severe Sinus Issues, Massive Headaches, Hand Numbness, Exhaustion. For the past 2 years, it had gotten extremely hard to breathe, at the slightest of exercise. Again I just thought it was me and actually beat myself my up for being so out of shape!
Last year- February 2017, my fiancé got diagnosed with a very aggressive Leukemia and together we battled for 8 months before he passed away on October 31, 2017.
So when all this started on December 14, 2017- I assumed it was just stress related.
The beginning-
My very first symptom that I went to the doctor for was hearing loss. I went to our local MedWell where I was diagnosed with an ear infection and given antibiotics. I tried those and they made me very sick and after a week did nothing. My hearing got worse and then suddenly over two days time I began to paralyze from my belly button up.
My mom had to come to my place and help me stand up, sit down, get dressed, lift a glass. The pain was the worst I had ever felt. My mom was panicked because I have a very high pain tolerance. My arms and legs swelled to about double their size. My fingers locked up and would not bend. My skin broke out in dry rashes. After a few trips to the ER to be told there was nothing they could do, I suffered for weeks until they finally put me on prednisone while we waited for blood work. They tested for Lymes, Lupus, RA, PMR, all to no avail. My inflammation markers were through the roof so I got sent to a Rheumatologist.
Immediately she drew tons of blood work and wanted XRays of all my joints and my lungs. She thought it was Psoriatic Arthritis. On the XRay of my lungs, they found a shadow, which led to a Cat Scan where I was told I had 3 large masses on right lung. I lost it thinking it was cancer.
My Rheumatologist ordered a biopsy, and was fairly certain that the biopsy would yield an answer. My ANCA blood work was positive, and my inflammation was still bad. But she did not want to proceed without a biopsy.
For the procedure I had to go off the steroids and as soon as I did, I would paralyze again.
The biopsy failed. All they got was some muscle tissue.
Extremely frustrated and at my wits end, I was told I had to get a VATS procedure. On Feb. 26th they removed all three tumors (which were benign). Turns out they were gigantic and extremely necrotized. The surgeon actually used the word “gross”.
Finally on March 20th I got diagnosed with GPA/Wegner’s Disease. I was so happy to finally get an answer because I was beginning to think I was crazy.
The Now What-
I just started Methotrexate last week, Folic Acid, Prednisone 60, and an anti-biotic. It seems as if currently my kidneys are ok. I have a small amout or protein in my urine and I’m working closely with my Nephrologist. My lungs seem to be the worst affected at this time. But I can definitely breathe easier now that the tumors are out. I’m struggling this week with bad shoulder pain despite the Prednisone which is disappointing.
I’m excited to meet and hear from other people with this disease and begin to educate myself through this forum. I feel so overwhelmed with so much to learn. Thank you so much for checking out my story!
Brittany
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
HI Brittany,
Welcome to the "club". I hope that with proper care, you get back to near normal. Methotrexate is more of a maintenance drug for GPA. Rituximab or cyclophosphamide (cytoxan) are the biologics/immunosuppressants normally used to get the disease under control. The folic acid is to combat hair loss from the methotrexate. You're probably taking bactrim (sulfamethoxazole/trimithoprim) to prevent PCP pneumonia. The high dose prednisone will make you feel much better. However, your appetite may go crazy resulting in significant weight gain.
I don't know where you live in PA. If you're in the western part of the state, you may want to see a vasculitis specialist at Cleveland Clinic. I see Dr Alexandra Villa Forte there, and she's great. If you're closer to Philly, you may want to see a specialist at Penn.
As for the now what - I suggest the following (in addition to seeing a vasculitis specialist): Try to get some exercise (assuming it's OK with your current doc). If you do, start with just a little and gradually increase. You're not trying out for the Olympics, you're just trying to regain some strength. I walk and swim. I think being in better shape helps fight the disease. Also, watch your diet. If you can, eat more fresh fruits and vegetables. Eat less bread and simple carbs. Stay away from processed foods and soda. While you're on methotrexate, you should avoid alcohol (or have a little once in a great while). Also, watch your portion sizes.
The good news is that GPA is pretty treatable. Your docs may have to adjust your meds to keep it under control. It may take awhile before you can resume your previous life, but it can happen. I'm pretty much back to my pre-GPA life now, but it took most of two years to get there.
Good luck, and I hope you feel much better soon!!
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Welcome Brittany,
You have been through so much, my heart goes out to you. Pete summed it all up very well. You came to the right place on this site. The people here are very generous about sharing and helping. Yes, I too felt guilty for being sick so often, that my diagnosis finally removed ‘the weakling complex.’ You are on the same medication my rheumatologist started me on, but that didn’t cut it. Now I get infused with Benedryl, Prednisone and Rituxan. Today was my first day of my second series of four. The Prednisone has caused me to be sleep deprived. Today they shot 100 mg thru my body like grease lightning. My mind will race until 6am, but my body is exhausted. I also take daily Prednisone. My doctors say the same thing that Pete said, it may take them a few years, but they feel they will get me, like many others under control.
Stress is a trigger. If you enjoy any hobbies, and have the strength, now is the time to try with all of your might to think of positive things. Easier said than done...I know.
My deepest sympathy about the loss of your fiancé. Those emotions are raw, allow yourself to grieve, then pull yourself up by your bootstraps and remember the good times you shared. I have been on this earth 68 years and lost many loved ones, they will forever be in my heart, but I had to keep living. You will too, and we will encourage you.
I always try to end my monologues with something to smile about. The Prednisone has given me ‘the chubby cheek syndrome.’ Holding on to some ridiculous vanity I ordered facial contouring cream. I will either create cheek bones or look for a job as a clown!
Be safe. Be well. Masha
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Welcome Brittany. You are on what would usually be considered maintenance therapy, but if it's working then it's not a problem. When Wegener's first appeared in my life (over 20 years ago), there weren't as many drugs, such as Rituximab. I was given Cyclophosphamide, but couldn't tolerate it. So my treatment was Azathioprine with prednisone. Azathioprine is really a maintenance drug, but along with the pred, I achieved remission. Up until my latest flare, my treatment for relapses has been pred and azathioprine and that's worked well for 20+ years. But my last relapse didn't respond as well as usual and I ended up on Rituximab.
Keep us all updated .
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Quote:
Originally Posted by
gilders
Welcome Brittany. You are on what would usually be considered maintenance therapy, but if it's working then it's not a problem. When Wegener's first appeared in my life (over 20 years ago), there weren't as many drugs, such as Rituximab. I was given Cyclophosphamide, but couldn't tolerate it. So my treatment was Azathioprine with prednisone. Azathioprine is really a maintenance drug, but along with the pred, I achieved remission. Up until my latest flare, my treatment for relapses has been pred and azathioprine and that's worked well for 20+ years. But my last relapse didn't respond as well as usual and I ended up on Rituximab.
Keep us all updated .
It sounds like you had a great run of 20+ years in remission but it reminds us clearly that no remission regardless of how long is a guarantee of continuing. Nice there has been progress in treatment and hope more options and expertise evolve in next 20 years for everyone.
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Quote:
Originally Posted by
drz
It sounds like you had a great run of 20+ years in remission but it reminds us clearly that no remission regardless of how long is a guarantee of continuing. Nice there has been progress in treatment and hope more options and expertise evolve in next 20 years for everyone.
I just re-read what I wrote and I wasn't clear - I'm now 40 and was diagnosed aged 17. I initially achieved remission using Aza and Pred aged 18. From age 18 to about age 36 I had about 4 relapses. These were again treated successfully (I.e. got me back in to remission) with Aza and Pred.
My most recent relapse (aged 36) was stopped in it's tracks with Aza and Pred, but I was struggling to achieve remission. Thanks to advice on from this site, I learnt about Rituximab and also Professor Jayne at Addenbrooke's. I managed to get myself referred to Professor Jayne and through the Ritazarem trial, I've been treated with Rituximab.
My last infusion was just over a year ago and although I'm on a lot of medication for c0-morbidities, none of it is immuno-suppressive. I am therefore in drug free remission!
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Welcome to the family, Brittany,
I am deeply sorry for your loss of your fiance. May he rest in peace in the presence of Our Lord and let you know that he is watching over you.
I know how it feels to watch the love of your life fighting and passing. My beautiful Phil passed away from wg on Oct 2, 2014. We first met here in this forum....
.....
I echo the others who wrote above about your meds: mtx might or might not be strong enough to get the wg beast under control. It should start working after 6 weeks. I think it will be a good idea to consult with wg expert if you dont see a change or anyway.
Please keep on writing. It helps to be among friends who understand what's you are going through. Sending prayers ❤
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Love your response about the moon face! My face is currently the size of Texas. I do very little to it. Makeup, etc. I keep hearing my grandmother say you can’t make a silk purse out of a sow’s ear. Lol. However, I will gladly take it if that’s the road to remission.
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Quote:
Originally Posted by
BritMarie
Hello, My name is Brittany. I’m a 31 year old Pennsylvania girl who got diagnosed Tuesday, March 20th, 2018.
My story isn’t much different than the majority of people in that, since my first symptoms were bad enough to get my attention, it’s been a nightmare getting diagnosed.
A tiny bit of back story-
I was born premature and have very mild Cerebral Palsy. Because of this, I live with general pain and joint stiffness, fatigue easily, etc.
As the years have gone by, I’ve struggled with feeling terrible. I just assumed it was age and my CP- not going to the doctor, thinking it wasn’t anything major.
The things I noticed since about 15 years old were: Joint Pain & Muscle Pain, Severe Sinus Issues, Massive Headaches, Hand Numbness, Exhaustion. For the past 2 years, it had gotten extremely hard to breathe, at the slightest of exercise. Again I just thought it was me and actually beat myself my up for being so out of shape!
Last year- February 2017, my fiancé got diagnosed with a very aggressive Leukemia and together we battled for 8 months before he passed away on October 31, 2017.
So when all this started on December 14, 2017- I assumed it was just stress related.
The beginning-
My very first symptom that I went to the doctor for was hearing loss. I went to our local MedWell where I was diagnosed with an ear infection and given antibiotics. I tried those and they made me very sick and after a week did nothing. My hearing got worse and then suddenly over two days time I began to paralyze from my belly button up.
My mom had to come to my place and help me stand up, sit down, get dressed, lift a glass. The pain was the worst I had ever felt. My mom was panicked because I have a very high pain tolerance. My arms and legs swelled to about double their size. My fingers locked up and would not bend. My skin broke out in dry rashes. After a few trips to the ER to be told there was nothing they could do, I suffered for weeks until they finally put me on prednisone while we waited for blood work. They tested for Lymes, Lupus, RA, PMR, all to no avail. My inflammation markers were through the roof so I got sent to a Rheumatologist.
Immediately she drew tons of blood work and wanted XRays of all my joints and my lungs. She thought it was Psoriatic Arthritis. On the XRay of my lungs, they found a shadow, which led to a Cat Scan where I was told I had 3 large masses on right lung. I lost it thinking it was cancer.
My Rheumatologist ordered a biopsy, and was fairly certain that the biopsy would yield an answer. My ANCA blood work was positive, and my inflammation was still bad. But she did not want to proceed without a biopsy.
For the procedure I had to go off the steroids and as soon as I did, I would paralyze again.
The biopsy failed. All they got was some muscle tissue.
Extremely frustrated and at my wits end, I was told I had to get a VATS procedure. On Feb. 26th they removed all three tumors (which were benign). Turns out they were gigantic and extremely necrotized. The surgeon actually used the word “gross”.
Finally on March 20th I got diagnosed with GPA/Wegner’s Disease. I was so happy to finally get an answer because I was beginning to think I was crazy.
The Now What-
I just started Methotrexate last week, Folic Acid, Prednisone 60, and an anti-biotic. It seems as if currently my kidneys are ok. I have a small amout or protein in my urine and I’m working closely with my Nephrologist. My lungs seem to be the worst affected at this time. But I can definitely breathe easier now that the tumors are out. I’m struggling this week with bad shoulder pain despite the Prednisone which is disappointing.
I’m excited to meet and hear from other people with this disease and begin to educate myself through this forum. I feel so overwhelmed with so much to learn. Thank you so much for checking out my story!
Brittany
Hello Brittany,
I’m sorry you got sick it sounds like such a rough ride. But welcome!
So sorry about your honey. I will be thinking of you!
Sent from my iPhone using Tapatalk
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
You have been through so much! Im sorry for your loss, I cant imagine...I am from central Pa, close to state college. I dr at Hershey. Just wonder if we live close at all?
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
My Mom is new to the GPA club. Anyone know if a 4.1 ANCA number is a bad number ?
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Brittany,
My mom who is 80 got diagnosed like you JUST A COUPLE MONTHS AGO. LOST HEARING - IN ONE EAR, LOST OPPOSITE HAND USE, LUNGS TOTALLY FULL. VERY VERY SICK,but now already in remission only 2.5 months later. The drugs do work, be hopeful. You will feel much better very soon from now.
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
When I have flare up my shoulders and arms lock up
It normally take a month at 60 mg of pred to get the flare up down. I maintain at 15 mg of pred and methotrexate. But they always try the slowly lower the prednisone. . But it has failed once I get below 5 mg of pred.
Sent from my iPhone using Tapatalk
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Re: Hello! Freshly diagnosed, New to the Forum, Here’s My Story.
Quote:
Originally Posted by
BritMarie
Hello, My name is Brittany. I’m a 31 year old Pennsylvania girl who got diagnosed Tuesday, March 20th, 2018.
My story isn’t much different than the majority of people in that, since my first symptoms were bad enough to get my attention, it’s been a nightmare getting diagnosed.
A tiny bit of back story-
I was born premature and have very mild Cerebral Palsy. Because of this, I live with general pain and joint stiffness, fatigue easily, etc.
As the years have gone by, I’ve struggled with feeling terrible. I just assumed it was age and my CP- not going to the doctor, thinking it wasn’t anything major.
The things I noticed since about 15 years old were: Joint Pain & Muscle Pain, Severe Sinus Issues, Massive Headaches, Hand Numbness, Exhaustion. For the past 2 years, it had gotten extremely hard to breathe, at the slightest of exercise. Again I just thought it was me and actually beat myself my up for being so out of shape!
Last year- February 2017, my fiancé got diagnosed with a very aggressive Leukemia and together we battled for 8 months before he passed away on October 31, 2017.
So when all this started on December 14, 2017- I assumed it was just stress related.
The beginning-
My very first symptom that I went to the doctor for was hearing loss. I went to our local MedWell where I was diagnosed with an ear infection and given antibiotics. I tried those and they made me very sick and after a week did nothing. My hearing got worse and then suddenly over two days time I began to paralyze from my belly button up.
My mom had to come to my place and help me stand up, sit down, get dressed, lift a glass. The pain was the worst I had ever felt. My mom was panicked because I have a very high pain tolerance. My arms and legs swelled to about double their size. My fingers locked up and would not bend. My skin broke out in dry rashes. After a few trips to the ER to be told there was nothing they could do, I suffered for weeks until they finally put me on prednisone while we waited for blood work. They tested for Lymes, Lupus, RA, PMR, all to no avail. My inflammation markers were through the roof so I got sent to a Rheumatologist.
Immediately she drew tons of blood work and wanted XRays of all my joints and my lungs. She thought it was Psoriatic Arthritis. On the XRay of my lungs, they found a shadow, which led to a Cat Scan where I was told I had 3 large masses on right lung. I lost it thinking it was cancer.
My Rheumatologist ordered a biopsy, and was fairly certain that the biopsy would yield an answer. My ANCA blood work was positive, and my inflammation was still bad. But she did not want to proceed without a biopsy.
For the procedure I had to go off the steroids and as soon as I did, I would paralyze again.
The biopsy failed. All they got was some muscle tissue.
Extremely frustrated and at my wits end, I was told I had to get a VATS procedure. On Feb. 26th they removed all three tumors (which were benign). Turns out they were gigantic and extremely necrotized. The surgeon actually used the word “gross”.
Finally on March 20th I got diagnosed with GPA/Wegner’s Disease. I was so happy to finally get an answer because I was beginning to think I was crazy.
The Now What-
I just started Methotrexate last week, Folic Acid, Prednisone 60, and an anti-biotic. It seems as if currently my kidneys are ok. I have a small amout or protein in my urine and I’m working closely with my Nephrologist. My lungs seem to be the worst affected at this time. But I can definitely breathe easier now that the tumors are out. I’m struggling this week with bad shoulder pain despite the Prednisone which is disappointing.
I’m excited to meet and hear from other people with this disease and begin to educate myself through this forum. I feel so overwhelmed with so much to learn. Thank you so much for checking out my story!
Brittany
Hi and welcome Brittany,
So glad you have been diagnosed and can work towards treatments that help you, thoughts are with you about your partner and a very tough trip you had to get to this stage.
Shout when you need too we are all here to help each other..
Ben x
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