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Thread: Hello, newbie recently diagnosed with GPA

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    Default Hello, newbie recently diagnosed with GPA

    Hello everyone,
    I stumbled upon this forum desperately looking for information on Wegeners/GPA. I hope we can help each other out. I've been recently diagnosed with GPA, I guess in December 2016, although I have to say it has not been a firm diagnosis like through any type of biopsy.I am 53 years old and before this I was a very healthy and active person without any type of health problems. Avid tennis player and exercised 4 times a week. I live in Atlanta Georgia.

    If I go back to when anything went weird, I have to say that all my problems really started last May 2016 when I was told I had pneumonia or a bad lung infection. I had been feeling bad like for a month, without energy and wanting to go to straight to bed after work. They x-rayed chest and found a mass in upper left lobe which they said it was inconclusive for pneumonia so I was treated with antibiotics twice (first didn't work) and sent me to lung Dr. Got better after 2nd antibiotic. Also did a series of CT scans to check on the mass and it gradually got smaller so the next one was supposed to be in 6 months (Feb 17).

    Meanwhile, I went on with life. Started exercising again. Then in October I had a very painful episode of shoulder joint pain.. Ended up seeing a rheumatologist who started running blood tests. ANCA markers were there. Other symptoms started to show up fairly quickly. Severe joint inflammation,swelling and pain. Left eye was blood shot. My toes started getting numb and asleep/crampy. Then the numbness starting moving up my left foot and then right foot and then legs and now it's in my fingers, hands, arms, face, around my eyes. It also became painful with pressure and nerve pains. I also had bloody lesions in my legs which they biopsied later and came back as "leukocytoclastic vasculitis". I was told I had neuropathy in my feet. They put me on prednisone back in November, started me on lower dose (10mg) but due to symptoms and blood results, had to increase it gradually to 60mg daily where I am now.

    Back in Dec they did another CT of lungs and the mass on the left lobe had closed up and left a scar but a new mass showed up on the right lung (lower to mid lobe). Ordered a biopsy but bc of holidays, it didn't get scheduled until January 2017. When they went to do it, a month had elapsed that I was on prednisone and the lung mass had disappeared the day of the biopsy, so they didn't have anything to biopsy. I was disappointed I didn't have that proof that what I have is really GPA. However, due to blood work and nerve issues, Rheumy said she was pretty sure and that the disease was moving pretty aggressively on me and that she really didn't need the biopsy, that she wanted me to get treated ASAP. So, all that happened between november 2016 and now.

    Rheumy Dr recommended the Rituxin treatment over the citoxin. We got it approved (took like 3 weeks) and I started last week. Have only had one treatment and it made no difference so they could not lower the prednisone. On the contrary, Dr ordered pulse doses of steroids through IV to see if it was more effective controlling nerve pain than the the oral dose. Next Rituxin infusion is in 2 days. So, I guess the disease is attacking my lungs (although they are ok right now), nerves and kidneys (not too bad yet). she is calling it the mixed connective kind because my connective tissue is the worst symptom right now.
    I am not going to lie,both my husband and I are very scared right now. Feel like so far this disease has been very debilitating so far. I've had to ask to work from home since the nerve pain is pretty bad. Taking Gabapentin and Tramadol to help with pain.

    I am not feeling very positive right now since I thought that after first treatment of Rituxin, I would be able to go down on the prednisone and start feeling better. I feel a bit discouraged and scared.
    This high dose of prednisone is really bad and it's not even controlling my symptoms that well anyway.
    I am thinking I need to find a doctor that is a specialist in GPA. My rheumatologist has been great and she has been very caring and concerned with the progressive nature of this disease. however, I feel she doesn't have that much experience dealing with it.
    Well, I think that's enough of an intro. Should do another post to ask about GPA specialists.
    Thank you for the opportunity to introduce myself.
    Looking forward to sharing.
    Jeannette

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    Hello, Jeannette! Welcome to the forum. Hope we can help you.

    First of all, rituximab doesn't take full effect until several weeks after the infusion, so the high dose pred will help you feel better.

    Second, there's good chance you'll get back to a nearly normal life style. I was 64 when I was diagnosed, and like you, I was in pretty good physical shape (swam or walked nearly every day). The first 16 months after diagnosis were the toughest. Now, I'm back to swimming twice a week and walking twice a week.

    Third, getting a wegs specialist would be good. You can check the Vasculitis Foundation's website for a list of specialists. At minimum, some will consult with your local doc about your case, often at no charge.

    Fourth, I think diet is important. I've given up processed foods, most fast foods, and soda. I eat more fresh vegetables, fish, and lean meat. I've reduced bread and other simple carbs. Fortunately, I'm a decent cook, so I can make healthy dishes that actually taste good!

    Fifth, add to your knowledge about our dumb disease. Ask your doc questions and make sure you understand the answers. Especially question when a new drug should make you feel better. Also be aware of side effects. Ask your doc about the most common side effects and what to do if they appear.

    Finally, I'll share the advice the doc who diagnosed me offered: Take your meds as directed and live your life as fully as you can. Be patient - you'll get better.
    Last edited by Pete; 02-05-2017 at 11:00 AM. Reason: Correct autocorrect
    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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    Hi Jeannette!

    Welcome to the forum. Sorry you had to find us, but there is a lot of helpful information and great people with lots of advice.

    Like Pete said, Rituxan takes time to kick in which is why your doctor has you on a high dose of prednisone to help with the symptoms until it does. I am currently on Rituxan (I got a maintenance infusion yesterday), and it helps when I flare and keeps things under control. Rituxan is a good med, just give it some time. I hope it works well for you and provides some relief soon.

    It's also important to have a great doctor with experience treating wegs. I live in Ohio, so I'm not sure of doctors in the Atlanta area. You can look for one on the Vasculitis Foundation website (https://www.vasculitisfoundation.org...l-consultants/) or ask on here. If people on here live near you, they'll be more than happy to recommend someone. You can also email the VF, Cleveland Clinic, or Mayo Clinic and see if they have a recommendation for someone in your area. Until you are able to find a doctor with experience, you can always have your current doctor consult with someone at The Cleveland Clinic or Mayo Clinic.

    I was diagnosed in January 2012 while I was in college. It took a while for me to do some things I used to, but after taking time to focus on my health I slowly got back into running. I ran a half marathon last year. I had to take a walking break around mile 11, but being able to run again felt great. You might not get back to your normal, but you'll find a new "normal" and still be able to do some of the things you used to. Don't get frustrated on what you can't do right now, focus on you and your health. I know, easier said than done. Things will get better with time. If you ever have any questions or just need to vent, we are always here for you.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    Welcome, Jeanette, everyone
    Has said most of the important stuff, but I am glad you have found us, given that you unfortunately have WG/GPA. I know it is scary at the beginning, but the more time you spend here, reading others' stories, asking questions, searching the archives, etc., the more it will settle in and you'll realize that things will improve. This really is a great, caring, knowledgeable, and supportive group of people, from worldwide time zones, so there is usually someone up to read and respond! Every case is a little different, which makes it interesting. Sounds like your DX and treatment came sooner than some after problems started, which means you have less chance of sustaining permanent tissue damage than some of us. Hang in there, the meds will take effect, and please keep us posted!

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

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    Hi Jeanette
    I am also a newbie
    I think my doctor is going to start me on Rituxan in March. My methotrexate is not working and once I stop taking the prednisone my shoulders and all my joints lock up three days at time . Weird the 3 day per joint.

    I hope the Rituxan works for you . I just to want to start feeling like doing things again.
    And I am sure you are wanting the same.


    Sent from my iPhone using Tapatalk

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    Quote Originally Posted by Tim wga View Post
    Hi Jeanette
    I am also a newbie
    I think my doctor is going to start me on Rituxan in March. My methotrexate is not working and once I stop taking the prednisone my shoulders and all my joints lock up three days at time . Weird the 3 day per joint.

    I hope the Rituxan works for you . I just to want to start feeling like doing things again.
    And I am sure you are wanting the same.


    Sent from my iPhone using Tapatalk
    Hi Tim! You may need to continue taking prednisone until the disease gets stabilized. You're either experiencing pred withdrawal or disease symptoms arising from inflammation. How much pred have you been on?

    Is your doctor experienced treating GPA? If not, ask him to either consult with a Vasculitis specialist (see the Vasculitis Foundation's website for a list) or ask for a referral.

    Good luck!!
    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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    Pete
    I was on prednisone for year and got down to 1 mg per in November. But in December everything went back to day one.
    C proactive protein levels when to 15 . One is high.
    Now I am on 40 mg per day and lowering by 10 mg everything 14 days.
    Then I guess it's wait and see game . My doctor is a RA . He says he dealt with autoimmune before. But I have my concerns.


    Sent from my iPhone using Tapatalk

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    Quote Originally Posted by Tim wga View Post
    Pete
    I was on prednisone for year and got down to 1 mg per in November. But in December everything went back to day one.
    C proactive protein levels when to 15 . One is high.
    Now I am on 40 mg per day and lowering by 10 mg everything 14 days.
    Then I guess it's wait and see game . My doctor is a RA . He says he dealt with autoimmune before. But I have my concerns.


    Sent from my iPhone using Tapatalk
    Couple thoughts for you. Pred tapers should be slower. You may want to taper by 5 mg per two weeks down to 20. From there, go even slower. I tapered by 2.5 a month down to 10 and 1 mg/month from there. I was off completely for about four months, and then, had a small flare. Haven't been able to get below 4 since. I take 5 mg daily because I'd rather count one pill a day instead of four.

    If you have concerns about your doc, be direct with him. If he's treating fewer than a couple dozen vasculitis patients a year, he probably doesn't have enough experience. If his ego won't let him consult with a specialist or refer you to one, it's probably time to move on.

    Where do you live? I hope within a reasonable distance to a Vasculitis center of excellence such as Mayo or Cleveland Clinic.
    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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    Sorry you had to come here but it's a good group of people. The rtx does take time to take affect. Wishing you well.

    Sent from my SM-G920V using Tapatalk

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    Thank you all for all your replies and reassuring messages. I will try to be more patient and reset my expectations with the Rituxan treatment timing. Looks like it has worked for most of you and that it should eventually kick in. Just that the nerve pain symptoms are killing me in addition to the high dose of prednisone. I can't wait to lower it.

    Made an appointment at Cleveland Clinic for March 3rd with Dr. Villa-Forte. It will be the week after my last (4th) infusion of Rituxan so the timing will be good. I can't wait to talk to someone who deals with this disease all the time. I have so many questions.
    I really don't even know what type of Wegener's /GPA I have. My rheumy said connective tissue kind but it has never been confirmed with any type of biopsy.
    Thank you all, stay strong!
    Jeannette

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