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Thread: Journey to being diagnosed, treated, and already first flare up

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    Default Journey to being diagnosed, treated, and already first flare up

    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. Itís 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 Iím still learning about this disease

    Back in about September 2018 I started having a stuffy nose. Always suffered from allergies so didnít 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 didnít want to keep me on steroids but I insisted they do because I simply couldnít 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 noseÖ. 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 couldnít 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 couldnít walk, and any movement or touch would hurt.

    The next day a parade of doctors started including infectious disease because they didnít know what I could have. My heart rateÖheart 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 didnít. 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 couldnít 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 ďdilutedĒ and it couldnít 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 youíre 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 Öbrocostipy? Iím 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 Iím 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 didnít 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 ďmuscle painĒ it seems to be the GPA so Iím keeping tabs on that.

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Onirin,
    It certainly sounds like you have had a tough go of it. It is frustrating when a simple test is negative and they have to go for the most invasive test for an answer. I, myself am fairly lucky I have a positive ANCA but no matter how badly I feel my ESR is always within normal limits, and this can be frustrating.
    I am so pleased that you have had success with Rituxin and relieved as Iím sure you are that your neuropathy is getting better.
    I joined this group after having the disease a long time and have found that the people here are awesome & informative.
    Natty


    Sent from my iPhone using Tapatalk

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Thanks for sharing your journey. It is indeed frustrating not knowing what to look for remedy and the unknown nature of what flares up when can be frustrating. I guess it helps each one of us to realize how each day is important and do our best to be in control of this disease. Forums like this have been the best thing to keep your spirits high!

    Good luck on your journey and keep sharing!

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Onirin,
    You sure have had a long miserable journey before being diagnosed. I am glad you found us.
    There are many who can relate to all if not some of your experiences.
    Like Natie, my anca always reads positive. There are times it reads positive and I feel good. My doctors continue to tell me that anca is not the only determination for where I am with this condition.
    This brings me to your situation, and others whose anca has read negative. Why do doctors continue to say ďNo Canca, no GPAĒ
    I sound like a broken record, but I will say it again. Do not see just any rheumatologist. If you live in an area where it is possible to find one that is experienced with Wegeners, then by all means go to that doctor.
    If you care to share the part of the country where you live, others will help you. Many members go to the Cleveland Clinic and see a wonderful doctor, Dr. Villa Forte. I live in the Charlotte NC area and drive a few hours to go to Duke for a specialist.
    Please donít hesitate to reach out to us.
    Masha

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Thank you everyone for reading and your encouraging words.

    For those that are curious I live in southern California.

    At the moment I am pretty happy with my rheumatologist. There have been some slips ups but because GPA effects everyone different I don’t feel I can hold that against him. What I do like is how quickly he responds to get the situation under control. I know he has had patients with this disease before, and so has his colleague who helped me while he was on vacation. My current kidney and lung doctors have also had patients with GPA so even if they don’t fully understand it, they have seen some effects of it.

    I guess I’m just in the rocky part because it is the first year. How was everyone else’s experience getting it under control the first year? How many rounds or Rituxan did you have to go through? I’ve had 2 rounds (4 total infusions because you wait two weeks for another dose) and I have another scheduled in March.

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Hi~ I just joined this group and find it enlightening. I was diagnosed in May with GPA of sinus with positive anca and had a severe case of vasculitis in April. I started on prednisone 60mg/day, 2 doses of rituxan in June and budesonide irrigation’s. June and July were hard months due to prednisone side effects but started to feel better by end of August. However by middle of October my sinuses started to hurt and my ENT said they looked more red and raw. I was down to prednisone 8 mg at this point. I’m guessing this is a flare. I’m back to 10 mg on my prednisone and am scheduled for rituxan again beginning of December. I also developed severe left hip pain in July shortly after my second rituxan treatment. A MRI was negative. My bloodwork was and is normal. hip pain improved some by August but is back again, just not as severe. No other joint pain. Is this common?

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Quote Originally Posted by Mnjet View Post
    Hi~ I just joined this group and find it enlightening. I was diagnosed in May with GPA of sinus with positive anca and had a severe case of vasculitis in April. I started on prednisone 60mg/day, 2 doses of rituxan in June and budesonide irrigationís. June and July were hard months due to prednisone side effects but started to feel better by end of August. However by middle of October my sinuses started to hurt and my ENT said they looked more red and raw. I was down to prednisone 8 mg at this point. Iím guessing this is a flare. Iím back to 10 mg on my prednisone and am scheduled for rituxan again beginning of December. I also developed severe left hip pain in July shortly after my second rituxan treatment. A MRI was negative. My bloodwork was and is normal. hip pain improved some by August but is back again, just not as severe. No other joint pain. Is this common?
    For me I had lots of little joint problems to start off with. Iím fairly young so I was embarrassed and thought I was just ďout of shapeĒ but looking back it was probably the start of GPA. Later I had very bad wrist pain and the night I went to the hospital was because my feet had become very swollen and I couldnít feel the bottom of one. While waiting in the hospital They started to hurt and I couldnít walk and and slight movement of my leg would be sever pain. After I was treated it all got better over time. Before I realized I was having my first flare up I started having back pain and my feet started to hurt again.

    I now keep a close eye on any ďunusualĒ joint pain. If I cant figure out what I might have done to pull the muscle my immediate thought will be GPA. But everyone is different.

    Iím sorry you are having bad reactions to the steroids. My biggest issue was weight gain and felt like I was starving, but that was mostly while I was in and just out of the hospital because they pumped me with a lot because I was so sick by the time they figured out it was GPA.

    Iím currently on 20mg of prednisone and will see my doc next week with blood tests, heíll probably start tapering me off sense all feels well atm.

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Quote Originally Posted by Mnjet View Post
    Hi~ I just joined this group and find it enlightening. I was diagnosed in May with GPA of sinus with positive anca and had a severe case of vasculitis in April. I started on prednisone 60mg/day, 2 doses of rituxan in June and budesonide irrigationís. June and July were hard months due to prednisone side effects but started to feel better by end of August. However by middle of October my sinuses started to hurt and my ENT said they looked more red and raw. I was down to prednisone 8 mg at this point. Iím guessing this is a flare. Iím back to 10 mg on my prednisone and am scheduled for rituxan again beginning of December. I also developed severe left hip pain in July shortly after my second rituxan treatment. A MRI was negative. My bloodwork was and is normal. hip pain improved some by August but is back again, just not as severe. No other joint pain. Is this common?
    Youíre not that far from Mayo. If youíre not seeing a vasculitis specialist there, it would probably be in your best interests to go there.
    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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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Thanks Pete. Iím seeing a rheumatologist. He seems to know about wegeners disease and right now I feel confident with him.

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    Default Re: Journey to being diagnosed, treated, and already first flare up

    Not sure how common, but sure looks familiar, just different aches and rashes for me, etc. Best to you, follow your regimen!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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