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Thread: Newly diagnosed and scared

  1. #1
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    Default Newly diagnosed and scared

    Hey everyone,

    Just three weeks ago I got diagnosed with Wegenerís. I live in the Silicon Valley.I think initially it started with my first ear infection ever this May. Symptoms like fatigue came to, but sometimes went away again. In July i got diagnosed with tendinitis as my knees where hurting super bad and I thought i was floxed by Cipro. The night sweats started, but I was under a lot of stress at that time and google said, it can happen. After flying home to my family in September I got a sinus infection I couldnít get rid off and then the all over body ache started and the night sweats came back. I sent a message to my gp and she ordered me immediately in, took my blood, urin and sent me too get a chest x day done. In the afternoon I also had to do a cut scan. I basically had my diagnose the next day and she referred me to a rheumatologist with experience of this disease. A week later a good a lung biopsy done just to confirm everything. I have nodules in the lower part of my lungs and some cavities as well. What I donít have is a problem to breath or shortness of breath. I started with 60mg prednisone which got lowered 4 days ago to 40mg after my new blood and Urin Test came back normal. I initially had a little amount of blood in my Urin, but the kidneys where still working good. Today I have a heart ultrasound as my heart rate is a little jumpy right now. Tomorrow I will have my third Rituxan infusion. I also take Atovaquone, as I canít have sulfur drugs. My body is doing fine right now, I donít have any pain and the tests gets redone I think in 3 weeks. All my doctors work together and have a positive attitude towards my chances, but I canít see that right now. Iím so scared that I will cough up blood, as I havenít done this yet. Not even after the biopsy. Mentally this diagnose hit me so hard that since yesterday I got a prescription for anti anxiety medicine. My doctors think itís the steroids amping this all up. I also see a therapist right now. Iím still in shock and super overwhelmed by all this information. Seeing you posting here after been diagnosed for several years gives me some hope and I think people who are doing really well with this disease might not be posting here all the time. I know that with spotting a flare early and get treatment one is able to live a fairly normal life, but I am afraid I wonít spot it. I just donít want to die so early. I want to have a family. My husband is doing great and he is positive that we can manage this. I am not sure how often I will look into this forum at the moment as I am not sure how I can handle all this information. I will go on vacation next week and I am still working. I hope this will keep the bad thoughts away. I just donít want to get my life ruined by this disease!

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    Default Re: Newly diagnosed and scared

    Hello Yogasloth!!

    Relax. Breathe. Ok, I see you’re doing some of that.

    Your initial experience sounds like mine from nearly eight years ago. It sounds like you’re getting good care. It’s good that hubby is supportive. The good news is that you will probably return to something close to your pre GPA life at some point. It took me about 18 months to get there.

    Just pay attention to how you feel. If you have some sort of odd symptom (roaming joint pain, rash, eye or ear pain) — call your GPA doc ASAP. Better that it’s a false alarm or symptomatic of something else than active GPA.

    The steroids can cause anxiety. Be careful as you taper. You can generally go faster at higher doses, but you’ll probably need to be more gradual once you get to smaller doses.

    Enjoy your vacation. That’s good medicine.
    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 diagnosed and scared

    Hi Pete, thanks for your answer. Do you mean I have to look out for those signs right now or when I think I have a flare up? I understood it so that currently Iím ďsafeĒ with the steroids and Iíll need to wait till the Rituxan works. I am also nervous that Iíll get my fourth Rituxan infusion four days later, because of my vacation, but my doctor said itís fine.
    I will keep in mind that the steroids have to be tapered slowly. Do you know at what amount? Unfortunately I donít have the side effect of being hungry from the steroids, the anxiety caused loss of appetite, but I force myself to eat.

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    Default Re: Newly diagnosed and scared

    Just become more aware of how you feel. Once the disease is under control, you’ll know how “normal” feels. If you have something abnormal come up, that’s your clue to pay closer attention. If you’re no better (or you feel worse) after a couple days, call your doctor.

    As for prednisone tapers, I can only share my experience. From 60 to 40, it was -10 mg every two weeks. From 40 to 20, I dropped 5 mg every two weeks. From 20 to 10, I dropped 2 mg every two weeks. It got interesting below 10. I dropped 1 mg/month down to 5 with no problem. When I continued toward zero at that rate, I did get to zero for a few weeks before I started having roaming joint pains. This was a mild flare. (I got my first round of rituximab then — four weekly doses.)I went back to 10 for afew weeks and tapered down to five. I stayed at five for most of three years and then tapered to zero at -0.5 mg/month. I’ve been pred free since June 21, 2018, with no ill effects.

    Also, most people tolerate rituximab pretty well. You’ll get a big dose of steroids, some benadryl, and some tylenol to prevent allergic reaction. The flow rate is very slow. (My last dose — #13 — started at 33 ml/hour. It ‘s a 300 ml infusion of which one gram or less is rituximab.) They increase the flow rate every hour. The infusion generally lasts about four hours. I generally don’t sleep well the night of the infusion, but I’m back to normal in 36 hours. You should be fine on vacation. ENJOY!!!
    Last edited by Pete; 11-15-2018 at 07:10 AM. Reason: Added info about rituximab
    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 diagnosed and scared

    Well, to start "Yogasloth" is such a brilliant username that I can't help but cheer you on And you also nailed that phenomenon that any forum like this or FB group is going to have a preponderance of problems - people don't post all yippee skippee very much because they are out there yippee-ing and skipping. And one more attaboy/girl for realizing that it can be beneficial self-care to take a break from knowledge-stuffing. I myself had to take a break or at least strictly ration my forum time about two months after my daughter's diagnosis because I was getting stressed out rather than just informed and maybe even encouraged. so way to go on that also!

    I totally get how scared you are, and I think in a way you are right to be. This disease is no joke and should not be taken lightly. And it can be very disorienting to have your identity and life-dreams questioned all of a sudden. I am not minimizing your shock. But I will say, from my perspective from over five years in Weggie-Land, that you have every reason to feel confident (when the shock and horror have died down.) You were diagnosed before major organ damage occurred. You are young. You live in a part of the world that has top-notch doctors. You have a support system, including mental health support, and honestly, stress plays such a big role in the disease that having a therapist on board your team is really excellent! And you are responding to treatment. I feel really good about your future.

    My daughter is living a great life - it hasn't ruined her life at all. It has changed it, I believe, but hasn't ruined it. WG took one sport from her, but she gained a better one. It took one hairstyle, but she gained a different one. And she is chasing dreams, exploring new vistas, making friends, etc etc etc. You have as good a chance as anyone for children and joy and even relaxation in your future. I hope even in your near-future, on your vacation.

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    Default Re: Newly diagnosed and scared

    Hey Yogasloth,
    The replies you already received are right on.
    It is so normal to be frightened at diagnosis. I was OK when I heard it, but once I googled it, I was walking into walls.
    Don’t worry about spotting a flare. In my case, they have been loud and clear. I get a sinus infection, have gum problems and my legs really hurt.
    Last year I totally overdid Christmas. The day after giving a big party for the neighborhood I couldn’t get out of bed.
    But the most important thing to remember is Wegeners hits us all differently. You will know when something isn’t right. Time is of the essence, so don’t hesitate to call your doctor.
    Yes, the steroids have weird effects on us. But again, everyone reacts differently to this drug. I have learned a great deal from others on this site. Things doctors don’t think to tell you are talked about. Use this site as you feel comfortable. Just saying I find it to be a great source of support and information.
    As far as wanting a family, we have had others not only report the birth of their babies, but they post the beautiful pictures of their offsprings.
    You sound like you are on top of it, good doctors, tests, medicine and you are going on vacation. Good for you.
    Be well.
    Masha

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    Default Re: Newly diagnosed and scared

    I remember when I first started down this road it was the Fall of 2013. Came down with a sinus infection, then my mother fell and was hospitalized. I had to fly down to be with her and my dad as they shift living arrangements. I honestly think flying with a sinus infection kicked off the whole problem. Unlike you I didn't get a confirmed diagnose until this year. In between there were all the well it could be GPA (wenger's) or EGPA (Chunge Struss) or Poly something arthritis. I always knew when I was having a flare. Once the initial symptoms are controlled, you will recognize them also. I was scared and super stressed. Yet in the last 4 years I continued to work full time. I just recently retired and started my own business. Yes it's slowed me down and the most recent flare has forced a temporary pause. But my new treatment plan is working and I will be getting out of pause shortly. Talking to a consular really helps. The one who helped the most was the hospice lady who was working with my mom. Because she helped people face the death of a parent she was able help me to really gain a perspective on my health.

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    Default Re: Newly diagnosed and scared

    Hi Yogasloth!
    I can understand how you can feel overwhelmed & think ďwhy meĒ? But to help put this in perspective... I was diagnosed at 17 & am now 40. I think I have lived an outstanding life. Like every life I have had ups and downs. My life isnít over. I am a person that has Wegeners. But there is so much more to me than this disease. It does not define me. That being said-of course there are times I am exhausted & sometimes you need a break. I hope these words from everyone else gives you hope & you now know you are not alone
    Natty


    Sent from my iPhone using Tapatalk

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    Default Re: Newly diagnosed and scared

    Hi Yogasloth!
    I can understand how you can feel overwhelmed & think ďwhy meĒ? But to help put this in perspective... I was diagnosed at 17 & am now 40. I think I have lived an outstanding life. Like every life I have had ups and downs. My life isnít over. I am a person that has Wegeners. But there is so much more to me than this disease. It does not define me. That being said-of course there are times I am exhausted & sometimes you need a break. I hope these words from everyone else gives you hope & you now know you are not alone
    Natty


    Sent from my iPhone using Tapatalk

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    Default Re: Newly diagnosed and scared

    I feel your pain, Yogasloth!
    Both my Son and myself have had Wegener’s/PAN for over 20 years. Although we both have our health challenges essentially we have both triumphed over such a diagnosis.
    Since we were both so sick and untreated at the beginning I was relieved to get a diagnosis. My advice would be to see how much better you will likely feel once the Rituxan has worked and has put you in remission. Rituxan has worked well for both of us and had been the best treatment so far, with no side effects.
    I’ve found that worrying about what could happen with this disease is a waste of time and that using a proactive approach to overcome the challenges works best. There is a great deal of information and support available today to better cope with this, so all in all it’s a great time to become diagnosed.
    Please let me know if I can be of help.

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