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Thread: New to Wegener world

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    Smile New to Wegener world

    Hi... I’m Cathy and was just diagnosed with GPA June 15th 2018...after 6 months of bronchoscopies..CT guided bronchoscopies..lung biopsy finally a name was given to my ailment.. My story started upon returning from 10 day Disney vacation ... day after returning home I became very ill... thought it was flu but after 2 X-rays was diagnosed with pneumonia...then CT was performed and I was told the nodules on my right lung were cancer!! ..I was then referred to a pulmonologist who performed 30 biopsies but no cultures and lots of blood work but stated it was not cancer and he didn’t know what I had but they would keep searching..PET scan... more CTs done.. by this time the 3 small masses had taken over right upper lobe of my lung and needless to say I was scared! I sought a second opinion and luckily this pulmonologist performed more blood test right away suspecting wegeners...she was on the right track and immediately got me with a Thoracic surgeon who removed a nodule from my lung and the report confirmed Wegeners!!!
    My new pulmonologist once again got me in with the rheumatologist to get started on treatment...
    I started on a very high dose of prednisone (60 mg) but had to cut back to 40 as the high dosage caused an AFIB incident...so currently I’m on 40mg daily.. Folic Acid daily and methotrexate weekly..had to hold off on Bactrim as I had a reaction... this also makes me worry as all I’ve read state Bactrim is important..
    I will have my one month followup on the 23rd and this will be addressed then.
    I feel very fortunate that my kidney and liver functions are normal !!!
    I am terrified of this disease and did reach a very very low point the first 2 weeks in.. I have come to grips with it now but there is still so much to learn..
    So far things I’ve seen happen are nose bleeds...coughing blood but this has finally stopped.. swelling of left ankle.. Wegener rash on leg..hot flashes .. my voice has been taken to a hoarseness..tiredness (this is improving) vision changing...in the beginning chills and fever ( no longer have this)
    I don’t want this disease to control my life therefore I will continue to learn as much as I can.. make changes where change needs to be made but I want to live a life as close to normal as I can!!!
    Last edited by 3dottrs; 07-15-2018 at 01:08 PM. Reason: Incorrect date

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  3. #2
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    Default Re: New to Wegener world

    Hi Cathy,

    Welcome to the “club”. You’ll find the answers to many of your questions here, so ask away. It’s ok to vent about our dumb disease, meds, side effects, etc.

    I hope your local rheumatologist has significant experience treating wegs. If not, a consult with one might be worthwhile. When you see your doc, you may want to have a written list of questions you need answered. Make sure you get the time you need to cover your entire list during your appointments. Ask about meds, when you should be feeling better, side effects, what to do if you feel worse, and next steps in your treatment plan.

    The disease is generally pretty treatable. With effective meds, healthy eating, as much exercise as you can handle (start slowly and gradually increase), and living life as fully as you can, it’s possible to return to a near normal life.

    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: New to Wegener world

    Thanks Pete for your response...
    I so needed to vent and to be able to do so with someone who knows how this disease makes you feel.
    thanks again for the advice and I have added the questions you suggested to my ever growing list �� for my next appointment..
    hope you are doing well

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    Default Re: New to Wegener world

    Hi Cathy,
    First, listen to everything Pete said. He’s dealt with this culprit longer than I and his advice is on the mark.
    Second, and this is from me. The panic, fear and depression you are feeling is normal. As you get answers you will have a better grip on what you are dealing with and how you will deal with it.
    What not to do- do NOT believe everything you read on your computer. Many articles are outdated. Some may have information that does not apply to you. Believe me, when I was first diagnosed, before I ever met my Rheumatologist my husband and I lost it reading those articles.
    Important questions to your doctor. But the oddball thing you are thinking or feeling in between, ask it here. I see people answering questions about things I would never have thought of. Sinu-Pulse for nose, ice the ankle, cooling pillow for hot flashes- Costco sells them.
    Also, if you are just feeling down and need some emotional support give a holler. I am retired and have the time to listen.
    By picking up someone else’s spirits, it helps me to feel better too. So have at it, give yourself a little pity party. Then go open your front door and take a deep breath of fresh air and remind yourself you are still alive, just different.
    Masha

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    Default Re: New to Wegener world

    Thank you so much Masha for reading and replying to my post!!! It does help me not to feel so alone.. family is very supportive but unless you have this devil you can not imagine the feelings that are bouncing around inside..
    I’m one month in today so everything is still so scary... not being able to do yard work bothers me because as a Taurus I love digging in the dirt... I am thankful for the strength I found this week to clean my house lol..
    I’m sure as time goes on I will have more and more questions but for right now... thanks for being there !!!
    ( and you are right ... I’m staying off internet!!!)
    what part of the Carolinas? I was born and raised in NC but now live in VA...

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    Default Re: New to Wegener world

    We are in Charlotte, so we have the best of both North and South Carolina. Born and raised in Ohio, lived in Michigan, then married my husband. At that time if you were in corporate, you got transferred. We lived in Naples Fl, LA, the SF Bay Area, then many years in Jupiter FL. I missed the seasons, so we found this the perfect moderate weather place to retire. In the back of our minds, knowing we were aging we felt we needed access to a city with good health care. Wow, how true we find that.
    When your Wegeners gets under control you will be digging in the dirt in no time. My things are knitting and mixed media. Last year, when I was so weak I tackled a 24 canvas mixed media project. They all fit together to make one big wall art. Physically, I don’t know how I did it, but it was psychologically the best thing I could have done. My mind was on the project and not myself. For the people out there who work with this disease and must continue to do so for not only the money but also the health insurance, my hat goes off to them. By the time I was diagnosed I was retired and on Medicare. This gives me relief.
    What part of Virginia-love Williamsburg.

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    Default Re: New to Wegener world

    I’m in Chesapeake... about 45 minutes from Williamsburg.....born in Smithfield NC...left when I was 25...husband was military for 30 years so we’ve lived in Charleston SC(beautiful city).. San Diego Ca.. Guantanamo Bay Cuba... then VA!!!

    How long have you been dealing with Wegeners? I am so new to this and so confused with all my feelings... some days I feel like nothing is wrong then I have a bout of hard to breathe.. not sure if it is the Wegeners or the result of the lung biopsy... today is a rough day... feeling very tired.. several bouts of hot flashes and just over all moody... guess it’s the meds... can’t wait until next week when I see my rheumatologist to hopefully get some answers..

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    Default Re: New to Wegener world

    Welcome to the family, Cathy.
    The beginning is the thoughest, in all ways. In time, it will get easier; the meds will work more and you will become stronger, body and soul. The more you know about WG, the better you can fight it and deal with it. 40mg pred can sure makes one moody.
    I was on bactrim for 2 years and then it affected my liver so I couldn't take it anymore. So, not all of us are on it.

    Hang in there, write as much as you feel like. We are here for you.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: New to Wegener world

    Hi Cathy!
    Hang in there! We get it! Good days ahead!!

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    Default Re: New to Wegener world

    Can't add much other than what the others have said -- don't believe everything you read on the internet and it gets better and easier over time. Its taken a long time, but I think I've finally turned the corner to feeling half way decent for a "length of time". This forum has helped a lot of people, to include me, and is probably the only place to get current info and help. Best of luck on your wegs journey!
    Wegener's (​GPA )- dx Apr10, Granulomatous Hypophysitis - dx Apr10, Diaphragmatic Paralysis - dx Feb16, Bradycardia - dx Dec16. (my story)
    Forum Member Map -- world map for you to put a stickpin of where you are located....

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