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Thread: New to forum, not new to GPA

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    Default New to forum, not new to GPA

    Hello, I'm a 33 year old female and I've been diagnosed with GPA for about 10 years now. I was researching GPA, for the millionth time, when I came across this forum and really wanted to join in. I've got a lot of years of stuff to pull from, but I'll admit that I'm not very good with remembering what happened exactly when or technical names. I was still very young when I was first diagnosed and my family has been amazing at helping me. I'm going to try and be as concise as possible, but I also know I like to ramble, and I may have already tried to write this a few times already and I'll be at this forever if I don't just submit it.

    I came home from a miserable college semester with a desire to quit my current school and major. I didn't have any idea what I'd do next but thought I would take the winter to decide. Over December I began getting a lot of headaches so I went to my GP. She said it was my sinuses and was probably an infection. After a few months of seeing her every few weeks, my sinuses weren't getting any better and I had started developing aches in my joints. It got to a point where they were so stiff and sore that I couldn't get out of bed by myself and the process had me screaming in pain. So my GP began looking for new diagnoses and eventually got a positive ANCA test back. She sent me to a rheumatologist who put me on methotrexate. I should add that I was not on any steroids and he did not but me on any at that time. The next few months were rough. I hurt constantly. After several months they decided they would have to put me on prednisone as well. It took a few more months before they reached a dose that was high enough to combat my pain. But it was glorious not to hurt.

    Everything seemed good after this. I had a few ups and downs as my medication was decreased to be as minimal as possible but everything seemed ok. Until about 4 years ago, I began to get protein in my urine sample, which meant my kidneys were now affected and methotrexate would no longer be an effective treatment. So we tried Cytoxan. I was on this for about a month and began to feel slightly off. Saw I was looking yellow one night and next day family agreed so I went to the ER. Was taken off Cytoxan and left with just Prednisone for a bit to let my liver recover.

    The next treatment plan was to use Rituxan. The first round went fine but the next time I developed Shingles in and around my left eye a few days after my first IV. Was sent to Iowa City for a consult and they checked my Immunoglobulin levels which had all been decimated.

    My doctors decided they would only use Rituxan as a last resort. After some research my Rheumatologist decided that I should be on Cyclosporine and prednisone to treat my GPA and began seeing an immunologist who put me on IV infusions for immunoglobulins. (Should mention that there are 3 kinds of immunoglobulins, all of mine are low, and only one can be replaced by current medicine)

    Just came home a day ago from my most recent GPA flare-up. It wasn't a bad stay because it consisted of symptoms my doctors and I were already familiar with so we were well aware of its possibilities even when there were many others that were convinced I must have COVID because I had a sore chest and trouble breathing.

    Anyway, it's strange to think about how one conditions can snowball into so many other problems both because of its symptoms and because of medication side effects. Because of GPA I now have or have had GERDS, pneumonia, depression, anxiety, hepatitis, shingles, weakened immune system, one really messed up eye, and way more knowledge of the medical system than I ever wanted by the time I was 30.

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    Default Re: New to forum, not new to GPA

    Welcome, Tyledres,

    I'm so glad you joined and posted. Don't worry about remembering things or rambling in getting your experience and issues across. I am usually the same way. Everyone's experience with this disease is a bit different but there will be people here who have had some of your same issues. It is so good to be where others have been where you are and are eager to discuss the ins and outs of it all.
    Just briefly, I was diagnosed 9 years ago but obviously had WG/GPA for 2.5 years before that. At dx, I was started with Cytoxan and high dose prednisone and for about 8 years have been on methotrexate and lower doses of prednisone, having now tapered to 5mg of pred. I am doing pretty well, have never had kidney involvement, but just sinus, ear and lung, and very little joint pain. I have never needed RTX, so I will leave it to those who have, and those with more of the same symptoms as yours, to initiate replies.
    But one more thing: I wonder how experienced your rheumy is, by the fact that you were not given prednisone right away along with methotrexate. For most of us, I think that has been an important part of our initial treatment along with whatever main immunosuppresent you were prescribed.
    Best of wishes to you, ask any questions about what I wrote, and send me a private message if you just want to talk.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: New to forum, not new to GPA

    it is impressive a bit amazing that you had such a long run between initial problems and recent ones. You mention some kidney symptoms. Do you have any of the typical damage from GPA? Any current maintenance meds working for you?
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: New to forum, not new to GPA

    I'll try to answer your questions. When I was first diagnosed, the rheumy I was referred to had an intern or associate or something that he assigned me to. This was a younger guy and didn't have any other cases like me. After a few months he got a new job offer somewhere else and my rheumy decided to see me personally rather than assign me to someone else. I'm really glad he did because he's been really good for me. He started me on prednisone, sent me to Iowa City for a second opinion, and has been seeing me regularly every since.

    I don't think I have much typical damage from GPA. The only one I can really think of is that my sinuses have sometimes given me trouble with being crusty, bloody, etc. Most of the complications I have are from medications and their side effects.

    The current meds I'm taking are for treating and maintaining GPA are Cyclosporine and prednisone. Although I've been told that my IVIG infusions have shown some help with diseases like this but not enough research has been done with it to get approved for insurance, but since the reason I'm taking it is because my immune system has been wiped out, it's more of a possible side benefit for that treatment. Who can know. I've started to realize that medicine is more of an art than a science since no two people react the same way to the same things or experience a disease the same way.

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    Default Re: New to forum, not new to GPA

    Darn! My heart goes out to you. So sorry you've been going through this so early in your life. Most of us get it in our 50's. Also, in the plus side, in your 30's it means you heal faster.

    Mine started the exact way as did yours. I was put on Mtx and high-dose Prednisone on the very same day of the diagnosis - thus stopping the damage in less than 3 days.

    I'm usually not very eloquent, so forgive my bluntness today. I'm 3 years into this.

    1. You're experiencing autoimmune activity - this demon requires aggressive and proactive push-back every day. Strive to 'achieve remission and then to maintain remission.' Autoimmune activity (symptoms) means wegs is hurting your body, and if allowed to be, in the long run it will do permanent damage.

    2. You need a doctor who's not just nice but knows what he/she is doing, and must give a damn about your health. Wegs requires a doctor experienced with this.
    Last edited by seied; 04-16-2020 at 10:54 AM.

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    Default Re: New to forum, not new to GPA

    Yeah, looking back and knowing what I do now, I made a lot of missteps on my journey. But, I would like to give myself a little slack since when I was first diagnosed I was only in my early 20s. I thought I would be enjoying the college life, not dealing with a permanent and lasting condition. I had no idea what I was in for and honestly, I couldn't even take care of myself. I know I was technically an adult, I'll admit I couldn't even manage to take care of myself properly when I was healthy, let alone when I was sick and miserable. I relied pretty heavily on my parents and while they did their bests, they really weren't any more experienced with health problems than I was. My family comes from a dairy farm so I think at the time we had only had internet for about five years, it was dial-up, and slower than molasses. I suppose, we put our trust in the medical professionals and didn't push about the concerns we were having with my health. The best thing was when the first rheumy I was consulting with moved away and I was taken over by the one I'm with now. I think he might have one or two other patients with similar conditions. Maybe that's not the most experienced, but he's always been pretty upfront about my condition, the treatments, following closely, sending me for other consultations, etc. He also seems to be on top of what research there is and I know I'm not easy to deal with because I do have really adverse reactions to medications. Anyway, I guess, when I meant I felt like he was good, I meant that I feel like my care is in good hands. He's local enough, I can see him regularly, he listens to me, knows my history, is honest about what he's capabilities are and is really good about consulting with other doctors. He's has sent me to another hospital for consulting several times and each time they mostly just reiterate what he's already is doing. I know now, that the treatment I was getting at first was not good and probably did some damage but I feel like where I'm at right now is a good space. Sure, I've had a recent flare-up, but it was dealt with quickly and we've had another look at my meds to see what could be tweaked there.

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    Default Re: New to forum, not new to GPA

    Don't be too hard on yourself. We all need to give ourselves some slack. Getting a diagnosis of something most people haven't heard of is confusing and troubling. You were younger than most when you got it, though we've met others on this forum in their 20s or younger. The internet has been such a blessing to me and others, enabling me to find this forum even before a firm diagnosis. I had a dial-up connection at one time and can imagine the frustration of trying to get information about this disease that way.
    I, for one, am not too judgemental about your doctors. Depending on where we live, and our circumstances, we may not have easy access to the best experts on WG/GPA. I never have. Initially, I was steered into being treated by a pulmomologist, since I had significant lung involvement. I was only his second WG patient. I didn't much like him personally, but he knew the right treatments and got me out of the woods successfully. When he retired I decided to get a local rheumatologist. There were only about 3 in my town and I took a chance on one. He was nice, and said he'd treated about 20 WG patients, which still doesn't make him an expert by most people's standards. I felt he didn't do anything but monitor my meds and look at my blood labs. But I was pretty well stabilized, so it didn't matter much. When he wouldn't take my new insurance, I ended up being treated by the new pulmonologist he had previously referred me to. I really like this guy and feel he is more comprehensive in evaluating my condition. But he is hard to get an appointment with him because there is a shortage of pulmonologists in my town. Especially now, with the virus thing; I haven't even found out the status of my May appointment. If I suddenly became a lot sicker, I know there are more expert rheumatologists in Seattle, 60 miles away, but I cringe at going there in my old car, with all the traffic, and especially now, with Seattle being a hot spot for the virus! Although the curve is flattening here. But I don't even know if I could get an appointment.
    All that just to say I'm glad you now have a doctor you feel good about, who is comprehensive and attentive, and that's the best some of us can do these days. You are still young and have a lot of good years ahead of you, and you seem to have a lighter case than some of us. I do, too. If WG rears its ugly head and you suddenly get a lot sicker, your current doc will deal with it, will consult with others, and get you the best treatment if he feels you need more. And this forum will be here for you no matter what. I think you are in pretty good shape, and I really appreciate learning more about your background. Best wishes to you.
    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 04-20-2020 at 10:08 AM.
    Anne, dx'ed April 2011

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    Default Re: New to forum, not new to GPA

    Sorry I was too blunt.
    I'm glad you have a good relationship with your doctor.

    Because now you're having other organs involved, your course of treatment may change. Hopefully being young and if in remission over time, you could regain your health.

    Perhaps one consultation with a Wegs expert is all your doctor needs to design a course of treatment that's effective and works for you. Feel free to share it with us; you can read in our forum we saved many patients. Members here alerted the mother whose 10yo girl was about to receive a course of treatment that had it been implemented would have rendered her sterile for life.

    I use a really nice Physician Assistant (PA) who's under the direction of a Rheumatologist.
    I think I'm their only Weggie in their practice. PA's are very accessible, knowledgeable and caring.
    She evaluates me every 3 months and renews my prescriptions, which is all I need to maintain my remission.

    In my case, my PA lets me have a supply of multiple sizes of prednisone pills, 1mg, 5mg, and 10mg.
    I'm tapered down to 2.5mg/day, but I'm ready to quickly go as high as 20mg/day to stop a flare up and then taper my way back to 2.5mg/day gradually. I'm still in one piece and without symptoms. I stay very vigilant to stop flare-ups within a day from onset by adjusting my dose as needed.

    At the onset, I had to go through 5 doctors until finally I got correctly diagnosed. lucky for me, it took no more than 5 weeks in really, really bad shape and unbearable pain. But I also ended up with prednisone-induced osteoporosis because my original rheumatologist had me on very high-doses of prednisone (60mg/day) and didn't put me on alendronate nor did he bother to check my vitamin D levels. There are many sub par doctors out there you must beware.

    In general, if you're on Mtx once a week, you'd need to be on low-dose prednisone, alendronate for bone health, vitamin D and calcium, and daily folic acid.

    Take good care of yourself.

    Ed.
    Last edited by seied; 04-21-2020 at 01:10 AM.

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