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Thread: Newly Diagnosed

  1. #1
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    Default Newly Diagnosed

    Hello everyone. I'm Alan and 58 years old. I'm from South Carolina (the Charlotte area). I was officially diagnosed a week and a half ago. I have a consult tomorrow with Rheumatology. Then they are going to order (from what I understand) Rituxan. I don't have any renal involvement. My biggest challenge is shortness of breath doing day to day normal activities. Carrying a case of water upstairs requires about a 3 minute recovery. Stuffy knows and coughing are the other two issues. The really frustrating part for me is before this, I was extremely healthy.

    Any ideas what I can expect when I start treatments? I understand if I go anywhere, I will have to where a mask and be extremely careful because I my immune system will be so compromised. Luckily, I work from home and generally don't go anywhere. But I do have two beautiful granddaughters I would like to see on occasion.

    I'm happy to have found this group, not so happy to be a part of it. No offense. ha ha.

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    Default Re: Newly Diagnosed

    Hi Alan!

    Since you were pretty healthy at disease onset, your outlook is probably pretty good. I got hit at age 64. I was swimming 1000 meters a couple times a week and walking 3 miles 3-4 times a week. Until Covid, I lived a pretty normal life. I mask when I shop. I walk 3 miles 4-5 times a week, but don’t swim because the local Y can’t get enough lifeguards. My life is pretty close to my pre-GPA life adjusted for age (I’m 76).

    In addition to the Covid vaccine, I also get Evusheld, which provides more antibodies when rituximab wipes out the vaccine. Unfortunately, Evusheld doesn’t protect against all the Covid variants. I got Covid in September, and was pretty wiped out for 4-6 weeks. I’m fully recovered now.

    We have three grandkids who live nearby. They are all in elementary school. If they aren’t well, we stay away from them. If they’re well, we see them and go maskless.

    My rituximab infusions (500 mg 2x/year) are nonevents. Since I have to drive to Cleveland (125 miles from home), it makes for a long day.

    Hope this is helpful — and encouraging!
    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

    Hello Pete. Thank you so much for reaching out and especially for giving me a better understanding of what to expect. I look forward to being able to take some nice walks again. Also, thanks for the Evushield info. I was not even aware of its existence. This is all so new. I'm originally from Kentucky in the Ohio Valley area. There is no place within 2 hours of Cleveland that I would desire to live. Way too cold. Ha HA.

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    Default Re: Newly Diagnosed

    Welcome Alan, guessing you are in Fort Mill or Indianland, my neck of the woods. I am 72, got diagnosed five years ago. I think I gained more information from this site than any research. Heads up, Oakhurst Pharmacy in Charlotte has Evusheld, When you see your rheumatologist have them fax in the prescription. The pharmacist is great. I heard about that place from this site! I get two infusions a year, 1000 mg each, my husband and I stay N95 masked in public. Mine is sinus, diagnosed by a CEENTA ENT, Flonase helps, so does a daily mucinex. I hate prednisone, but it was a necessary evil, almost off of it. I will be happy to share with you any of my local experiences. We are very fortunate to live in this moderate climate, walking is safe and easy for us.

    Masha

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    Default Re: Newly Diagnosed

    Hello Masha,

    Yes, Fort Mill in Baxter. I start my infusion Tuesday. I talked to my Rheumatologists Friday at consult about Evushield. He agreed and said we will start it after my 2nd infusion.

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    Default Re: Newly Diagnosed

    Alan, we love the charm of Baxter Village. When I was originally diagnosed the information on the internet was terrible. One person on this site said he even made out his will. I started with a Charlotte rheumatologist who had little experience with this disease. Then I went to Duke, to the head of the department who had studied Wegener’s for over 40 years. She said that twice yearly Rituxin was as effective as the more frequent infusions, she added Bactrim 3 x weekly to my protocol. My colds would turn into pneumonia, so this is a safeguard. Unfortunately that wonderful doctor retired, so I transferred my care to a Tryon rheumatologist here in Ballantyne, who followed the same Duke protocol. She is now going to South Charlotte, but there will be another rheumatologist in this Tryon. They have an infusion center there and the RN is wonderful, your vitals are monitored constantly. We live in Sun City, so it is convenient for my husband to drop me off and come home during those long stretches. The high dose steroids in your infusion cocktail can cause and unbelievable appetite, so pick up at Portofino, Indianland is common. When I started this journey I was having a lot of dental problems, I have a fantastic oral surgeon in Blakeney. I recently had eye surgery, wonderful eye surgeon, who knew this disease and would not touch me until I was treated with eye drop antibiotics.
    Feel free to pm me through this site with any questions. Having your own knowledge and good doctors who do not hesitate to refer you to specialists is vitally important.
    If I had grandchildren I would not hesitate on visits. Your family will not expose you to anything that is problematic. I curtailed my activities here in Sun City because I found people coming out with colds, coughs and being inconsiderate of what my consequences would be.

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    Default Re: Newly Diagnosed

    My wife is a CRNA with Tryon, so I almost ended up going to a Rheumatologist within Tryon, but because my Wegener's started as what they thought was a Pulmonary issue, I was initially referred to an Atrium Pulmonology Oncologist. I initially had COVID at the end of August, by by the end of September, with zero relief, my PCM recommended I go to the ER and get a CT. The CT showed a mass in my lungs upper right lobe. Their initial thought was that I had cancer. They put me on Steroids and antibiotics for 30 days, then had my visit my the Pulmonologist. They repeated the CT and the mass had gotten much smaller ruling out cancer, but now I had all kinds of activity in my left lung. At this point he said, this is looking more and more like Wegener's, but need labs to confirm. Urinalysis showed no kidney involvement. but the blood work showed all the signs of Wegener's. PR3 >8. He recommended me to see Atrium's Rheumatologist to keep me in their system so he has better oversight and can manage my progress. Saw the Rheumatologist for the first time this past Friday and have my first infusion this Tuesday. The Rheumatologist spent like 30 minutes with me on Friday educating me, answering questions, etc. I am very happy with everyone that I have seen to date.

    I am also blessed to have a lot of medical people around me. Again with my wife being a CRNA, my sister is a Director of a Heart and Vascular Center, my oldest son is an ICU Nurse and my daughter-in-law is an OR Nurse.

    Looking forward to getting all this started and moving toward recovery. i am tired of being sick.

    I do love playing Golf at Carolina Lakes. Beautiful course.

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