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Thread: Newly dx 11/28/18 and scared!

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    Post Newly dx 11/28/18 and scared!

    So, what a journey since Thanksgiving... I don't believe there was a symptom that I DID NOT have. Thank God for the Pulmonologist, Dr. Downing here in Indiana! He looked at me and my symptoms, talked with my fiancÚ and said " he has WGP"- from there was renal biopsy to confirm, dialysis 3x/week> I was in ICU in Indianapolis on a vent as I was coughing up blood, had pneumonia, right lung had atelectasis moving into the left lung- I was a smoke, hence the word "was". The Rheumatologist said it would get worse before better> And it did.... 30+ days in hospital, home on dialysis, oh and I received 4 blood transfusions and plasmapheresis while in ICU- receiving 80mg of prednisone, tapered by 10 mg as of Jan 2, stomach pill, antibiotic, blood pressure med, high cholesterol med, and a binder to help absorbing the phosphorus of what I eat. I really have to watch my diet..... I had sinus reconstruction at a young age due to a car accident and I live along a river so my sinuses are a challenge for me, I use a CPAP for sleep apnea, I am emotionally drained as I am a skilled trade tool and die make for Chrysler and this disease came out of nowhere and knocked me to my knees, which reminds me of the pain......the joint pain.....wow. My fiancÚ is a nurse and helps a lot but my anxiety and being scared never leaves my mind! Im not ready to give up, Im not in remission yet, haven't been told how I will know when Im in remission. I hope to go back to work....I have hope and Faith but both are tested some days. I try and remain positive.. and I really appreciate this forum. Its comforting to know Im not alone and can relate to most everyones stories. Thank you! May you all learn to manage this disease/flare ups and move on with your dreams, maybe alittle altered but we are alive and find you a goo Rheumatologist is key and what ever other organs you have involved, get a specialist and my nurse fiancÚ said the hardest thing for her is to see me daily go through this but keep ALL DOCTORS INVOLVED ON THE SAME PAGE TO GET THE OPTIMAL TREATMENT> which she spends a lot of her time making sure labs get to doctors that are not able to access his info........as my disease continues, I will continue to post. Feel free to ask me anything, I want to help bring awareness to this disease and the sooner diagnosed the better the outcome. My Pulmonologist said this disease is under diagnosed, so lets help others. One thing I noticed is Im currently on my 4 dose of Cytoxan and don't see many others on this chemo med.....wonder is its because by the time I was diagnosed I was considered severe......... Have a good day all

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    Default Re: Newly dx 11/28/18 and scared!

    Hi Matt, and welcome to the “club”.

    I was on oral cytoxan (150 mg/day) for about 16 months. That (and 60 mg/day of prednisone) got the disease under control within about six weeks after diagnosis. I found this forum about a year after I was diagnosed. The key finding for me was the necessity to find a doc who’s experienced treating vasculitis. That led me to Cleveland Clinic. Dr Villa Forte there got me to remission in another year. We defined remission as stable labs and feeling well.

    I get labs (CBC, comprehensive metabolic panel, C-reactive protein, sedimentation rate, and urinalysis with
    microscopy) every other month. I’m a somewhat active 72-year-old. I walk 2-4 miles 4-5 times a week. I play (bad) golf and do my own yard work. Yesterday, I went to my first Silver Sneakers fitness class at the Y and plan to go twice a week.

    My current meds for wegs are an annual 1 gram dose of rituximab and Bactrim DS 3x weekly. I got off prednisone last June.

    Cytoxan as induction therapy is an older protocol. I was on it at least 10 months longer than I should have been. I get the periodic urinalysis done for two reasons: 1) to check for wegs activity and 2) to check for signs of bladder cancer — a side effect of cytoxan. Thus, talk to your doc about other therapies.

    If Cleveland Clinic is a reasonable drive for you, see if your doc will refer you. For me, Cleveland is about 2.5 hours one-way. My PCP and other docs are at Ohio State.

    Good luck, and keep us posted about how you’re doing.
    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: Newly dx 11/28/18 and scared!

    Hi Matt - the folks here and on the various disease related face book pages have been wonderfully helpful and supportive as you have learned. Was there a reason your medical team went with cytoxan rather than Rituxin?

    If your not already - do keep a journal of your symptoms as well as your diagnostic testing results although many have access to a portal that houses this information from hospitals and doc offices . With that said - I still keep an excel spreadsheet with my labs and strive to print my X-rays etc - just to be safe

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    Default Re: Newly dx 11/28/18 and scared!

    Wow, Matt, you have been down one heck of a road. And yet it sounds like you are managing to keep a positive attitude. Your nurse fiancÚ sounds like a real keeper. Some have come and gone from this site, and others find it to be a great support tool. I know I do. This is such a strange disease, and as you have learned, it has many tentacles reaching in different directions. One time, right after I got on, I realized I had a hole inside my nose. I wrote ‘help’ told my problem, went to the doctors and when I returned to my IPad found so many helpful responses.
    Your Pulmonologist is right, underdiagnosed. Surprise number 2, there are many doctors who know nothing about this disease. As a Chrysler employee my guess is you have good health insurance. That is so very important.
    My husband just explained to me what a tool and die maker does. You are skilled!
    You will learn what works for you, then you will start to recognize when a flare is heading your way. Sometimes they come lightening fast, and the only thing I can say is your response must match that speed. I will write about how I spent today in an EENT clinic. Stay with us and you will laugh and cry and you will come out stronger.
    Masha

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    Default Re: Newly dx 11/28/18 and scared!

    Good morning Pete,
    I was hoping I got my post out there as Im not real skilled with a computer...... I as about 6 hours from the Cleveland Clinic but my Rheumatologist consults with them about my disease. My fiancÚ and I did decide if I did not get better, off to Ohio we go! I fiancÚ told me as I was "out" on the vent that they chose Cytoxan as my symptoms were multiple and severe but I see her Monday and will ask. One thing Im not afraid to do is ASK questions and my nurse fiancÚ helps guide me with what to ask and believe me, she is protective and has her own questions..... Im learning to have patience, which is not a bad thing, but something Ive never had. I am feeling better and need to move to the next level of exercise.... thank you Pete for responding> I will post as my journey continues.

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    Default Re: Newly dx 11/28/18 and scared!

    HI- I love this forum. It alone has eased my anxiety. Thank you all> My fiancÚ got me a journal already and I keep track of my intake and outputs for dialysis as well as the meds they might give me during dialysis- I like the spreadsheet idea and Im not good with that but will mention to my fiancÚ as I got labs coming from all doctors. I did see my Pulmonologist yesterday and he ordered a swallow test and a pulmonary function test> I see my Rheumatologist on Monday and I will ask about Cytoxan vs Rituxin and let you know.

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    Default Re: Newly dx 11/28/18 and scared!

    Matt,

    If I had to guess they went with Cytoxan because man you were in serious bad shape, and it works faster than the Rituxan. I know @drz said they had to go to CTX over RTX or he wasn't going to make it (he's doing fine now, or as fine as fine can be). Here is hoping they go with RTX as a maintenance drug, far fewer side effects.

    You are still a young man and I'm praying you can make it back to work. You sound like you take pride in what you do (you should, you got skills) as do I. My ability to work is what keeps me coming back to this forum as I want to stay educated on this disease, stay strong and continue to provide for my family.

    Just keep your head up my friend, follow the doctor's orders, and I wouldn't be doing my job if I didn't say monitor your urine at home, and get yourself a good eye doctor, as pred and GPA can tear the eyes up.

    All the best!!
    Last edited by richard052018; 01-28-2019 at 12:28 PM. Reason: Bad line spacing after cut and paste

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    Default Re: Newly dx 11/28/18 and scared!

    Hi toolman, thanks for sharing your story. It sounds like you are in good hands. I had fewer symptoms than you but it was absolutely the hardest thing I've been though. I don't want to imagine what it was like for folks before a treatment was found (70's?). I live pretty normally now for which I am grateful, and feel comforted that we know what we are dealing. I'm still on RTX, AZA (100mg) and PRED (only 2.5mg) after 20 months of dx.

    I don't know about the Cytoxan choice. My docs say there is no set method of treatment that works for everyone, and have to use their judgement and make adjustments along the way.

    It get's better and you will enjoy life even more than before. Praying for your continued healing.

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    Default Re: Newly dx 11/28/18 and scared!

    "monitor your urine at home" - I remember something about this in my initial research months ago and forgot about it. I should get on this forum more often.

    Luckily I have appointment with rheum at DUKE tomorrow and will ask about this.

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    Default Re: Newly dx 11/28/18 and scared!

    Hi Matt and welcome,

    Your story is so similar to mine (Pneumonia, plasmapheresis, CPAP, kidney failure, coughing up (LOTS) of blood, blood transfusions)
    Are you still on dialysis? If so, when/if you're feeling well enough to return to work, dialysis can be performed through the night, leaving the daytime, relatively, normal.

    If you're considering transplant you might want to read my thread under the Renal topics section.

    Your story seems similar to mine, but I was fortunate enough for my kidneys to recover well after a few weeks of dialysis. But over the last 24 years I've had relapses of Wegener's which did repeated, permanent, damage to my kidneys. Once the functio had got to 18%, my kidneys have slowly deteriorated to 9%.

    You say you're not sure how you will know when you're in remission. It's often hard even for the drs to say for certain. Firstly, blood results will give a good indication, but the rest will be down to yourself "feeling" that everything is now settled and inactive. This comes in time with experience. When you do achieve remission, you won't revert to being as fit as you were before Wegener's first entered your life (especially with your kidney failure). You may always suffer with symptoms such as joint pain, but it should be at manageable levels whilst in remission. People with lingering symptoms are often said that their disease is "smouldering" and some never quite achieve remission.
    You need a good dr who allows you to choose how you would prefer your maintenance therapy. I have always chosen to try and come off maintenance meds once I hit remission (increased risk of relapse, decreased risk of medication side effects, inc. cancer), whereas many others prefer a more powerful maintenance therapy to give best chance of no relapses.

    As I'm having a transplant, I will be on permanent immunosuppressive drugs and therefore, I am less likely to relapse.
    Diagnosed April 1995

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