Onirin
10-31-2019, 05:43 AM
Hello! I have been reading the forums a while and now would like to share my experience with GPA which started in September 2018 at the age of 32. My family compares the ordeal to an episode of HOUSE. It’s a long one, I hope that is ok, but I feel a lot better being about to talk about it with people who understand. I might get some of the time line mixed up and terminology as I’m still learning about this disease
Back in about September 2018 I started having a stuffy nose. Always suffered from allergies so didn’t think much of it. However, after a few days I got a bloody nose and little headaches. Primary Doctor thought it was a sinus infection and gave me some antibiotic. Went through the whole bottle and nothing happened, so they gave me a stronger antibiotic and did a CT scan. After emptying that bottle there was still no improvement. By this time my headaches were getting much worse, I was basically taking a full dose of Advil possible a day. Also, my nose would completely clog
Then doctor then gave me steroids and I started to have relief. Tapered off from 40mg and was feeling good, but two weeks later the plugged nose and headaches started again. This kept repeating. They didn’t want to keep me on steroids but I insisted they do because I simply couldn’t function without (This will be important later!). I also want to point out that during this time my right wrist started hurting and swelled up. The doctor thought it was Tendonitis due to my job (of course now we know better).
Finally, I was referred to an ENT, she took one look up my nose, compared it to one big road rash and immediately thought GPA. So she did some tests and it came back negative. We set up a time in January for a surgery to clear out my nose…. I never got to the surgery because things started going bonkers.
In mid-January I got a fever, thought it was just a normal fever because of the steroids suppressing my immune system, so I took time off work. I was out for 2 weeks and I barely ate but drank a lot of fluids. I was taking a nap when my left foot felt like it had fallen asleep. I sat up and tried to wake it up but no matter what I did I couldn’t get my heel and big toe to wake up, they were basically dead weight. We went to ER and both my feet started to swell super bad and burned with intense pain. At one point my husband said I fainted for about 10 seconds, luck I was in a chair. Hours later they admitted me and were worried I might have something so put me in a temp ICU which in hind sight cracked me and my husband up because he was sitting in there with me with no mask but everyone else was walking in covered up through a special door. My feet were in intense pain, I couldn’t walk, and any movement or touch would hurt.
The next day a parade of doctors started including infectious disease because they didn’t know what I could have. My heart rate…heart pressure? Not sure was resting at 140. They were taking tests and giving me scans and all sorts of medication for the several days to see what worked and what didn’t. They noticed I had phenomena, my whole left lung was basically covered in it. I was also super malnourished. Because of my feet I was bed ridden and couldn’t go use the rest room so I had a pan and realized I was calling for a pan every 30 min. They did tests for my kidney and said it was “diluted” and it couldn’t retain anything. I was put on a strict liquid limit and some medication to try and get it under control. It was awful, my mouth was bone dry all the time, I was starving but food turned to gum in my mouth. Imagine having to count how many grapes you’re eating so not to go over your liquid limit.
Surprisingly they tested me for GPA again but for a second time it came back negative. They were about to perform a …brocostipy? I’m spelling that wrong, but were trying to get my heart and breathing under control first. Before they could preform it they got some results on what they called a cross test. They grabbed some lung tissue through my side and it tested positive for GPA. They put me on Rituxan right away.
I was in the hospital for 20 days, bed ridden, had to have a pic-line because my veins kept collapsing and then be shot with blood thinners for a few weeks because there was a clot. I spent another 2-3 weeks at home recovering, and my first 3 weeks back at work were all half days because mentally and physically things were tough. I had to go through physically therapy because of my feet. I almost cried I was so happy the first night I made it up my stairs to my bed after not being able to the first few attempts. Luckily they did some kind of nerve test and they said my nerves in my feet should heal. Before I chouldnt even feel a needle prick on the bottom of me feet, now I can feel my finger but it's a little numb.
I reacted very well to all the medicine given to me. The Rituxan seemed to work beautifully. My kidney recovered and I’m able to drink all the liquids I want. My lungs slowly recovered but I have a scar of some sort on it now so I have to use an inhaler.
A few month ago I started having my first flare up. My sinuses had no reaction, but I started coughing this awful gunk and my feet began to swell again. Luckily I was coming up on my 2nd round of Rituxan so I just had to ride it out and am feel a lot better. We might just do the next round sooner than the planned every 6 months.
I never realized how sick I was till I was out of the hospital. My husband and Mother who came to take care of everything were aware but I think I was so out of it/ happy to finally be getting answers I didn’t know how bad it had gotten. My doctors all agreed I probably saved my kidneys by constantly insisting on new prescription of steroids.
Also for those that do the blood tests for flare ups, my Anca levels tended to be "standard", even when I was in the hospital, my doctors now know to instead look for my others signs during a flare up. Any time I have an unexplained “muscle pain” it seems to be the GPA so I’m keeping tabs on that.
Back in about September 2018 I started having a stuffy nose. Always suffered from allergies so didn’t think much of it. However, after a few days I got a bloody nose and little headaches. Primary Doctor thought it was a sinus infection and gave me some antibiotic. Went through the whole bottle and nothing happened, so they gave me a stronger antibiotic and did a CT scan. After emptying that bottle there was still no improvement. By this time my headaches were getting much worse, I was basically taking a full dose of Advil possible a day. Also, my nose would completely clog
Then doctor then gave me steroids and I started to have relief. Tapered off from 40mg and was feeling good, but two weeks later the plugged nose and headaches started again. This kept repeating. They didn’t want to keep me on steroids but I insisted they do because I simply couldn’t function without (This will be important later!). I also want to point out that during this time my right wrist started hurting and swelled up. The doctor thought it was Tendonitis due to my job (of course now we know better).
Finally, I was referred to an ENT, she took one look up my nose, compared it to one big road rash and immediately thought GPA. So she did some tests and it came back negative. We set up a time in January for a surgery to clear out my nose…. I never got to the surgery because things started going bonkers.
In mid-January I got a fever, thought it was just a normal fever because of the steroids suppressing my immune system, so I took time off work. I was out for 2 weeks and I barely ate but drank a lot of fluids. I was taking a nap when my left foot felt like it had fallen asleep. I sat up and tried to wake it up but no matter what I did I couldn’t get my heel and big toe to wake up, they were basically dead weight. We went to ER and both my feet started to swell super bad and burned with intense pain. At one point my husband said I fainted for about 10 seconds, luck I was in a chair. Hours later they admitted me and were worried I might have something so put me in a temp ICU which in hind sight cracked me and my husband up because he was sitting in there with me with no mask but everyone else was walking in covered up through a special door. My feet were in intense pain, I couldn’t walk, and any movement or touch would hurt.
The next day a parade of doctors started including infectious disease because they didn’t know what I could have. My heart rate…heart pressure? Not sure was resting at 140. They were taking tests and giving me scans and all sorts of medication for the several days to see what worked and what didn’t. They noticed I had phenomena, my whole left lung was basically covered in it. I was also super malnourished. Because of my feet I was bed ridden and couldn’t go use the rest room so I had a pan and realized I was calling for a pan every 30 min. They did tests for my kidney and said it was “diluted” and it couldn’t retain anything. I was put on a strict liquid limit and some medication to try and get it under control. It was awful, my mouth was bone dry all the time, I was starving but food turned to gum in my mouth. Imagine having to count how many grapes you’re eating so not to go over your liquid limit.
Surprisingly they tested me for GPA again but for a second time it came back negative. They were about to perform a …brocostipy? I’m spelling that wrong, but were trying to get my heart and breathing under control first. Before they could preform it they got some results on what they called a cross test. They grabbed some lung tissue through my side and it tested positive for GPA. They put me on Rituxan right away.
I was in the hospital for 20 days, bed ridden, had to have a pic-line because my veins kept collapsing and then be shot with blood thinners for a few weeks because there was a clot. I spent another 2-3 weeks at home recovering, and my first 3 weeks back at work were all half days because mentally and physically things were tough. I had to go through physically therapy because of my feet. I almost cried I was so happy the first night I made it up my stairs to my bed after not being able to the first few attempts. Luckily they did some kind of nerve test and they said my nerves in my feet should heal. Before I chouldnt even feel a needle prick on the bottom of me feet, now I can feel my finger but it's a little numb.
I reacted very well to all the medicine given to me. The Rituxan seemed to work beautifully. My kidney recovered and I’m able to drink all the liquids I want. My lungs slowly recovered but I have a scar of some sort on it now so I have to use an inhaler.
A few month ago I started having my first flare up. My sinuses had no reaction, but I started coughing this awful gunk and my feet began to swell again. Luckily I was coming up on my 2nd round of Rituxan so I just had to ride it out and am feel a lot better. We might just do the next round sooner than the planned every 6 months.
I never realized how sick I was till I was out of the hospital. My husband and Mother who came to take care of everything were aware but I think I was so out of it/ happy to finally be getting answers I didn’t know how bad it had gotten. My doctors all agreed I probably saved my kidneys by constantly insisting on new prescription of steroids.
Also for those that do the blood tests for flare ups, my Anca levels tended to be "standard", even when I was in the hospital, my doctors now know to instead look for my others signs during a flare up. Any time I have an unexplained “muscle pain” it seems to be the GPA so I’m keeping tabs on that.