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Thread: In process of being diagnosed

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    Default In process of being diagnosed

    I just registered as a member to this forum. I have spent since 10-2-19 trying to learn everything about this Wegener’s condition. Symptoms started in May, 2019. My doctors and other two doctors I went to see thought it was just a sinus problem, and I got antibiotics, and nose sprays, and 5 days steroid/anti -inflammatory pills, Claritin. Symptoms came coming back after I finished the treatments. Finally, I requested to be referred to an ENT doctor (first visit was 9-5-19). This doctor gave me antibiotic and steroids for 14 days, and he said I would feel better and I did, but again, symptoms came back. I went back to ENT doctor (9-16-19). At this point I had sinus pain and one of my ears had totally clogged and my right ear had also started. At this visit, he put in an ear tube in my right ear but he could not do it in my left ear, and he decided to wait until surgery to do it. They ran a CT Scan (I don't know why he could not detect anything at this time, or I don’t know if a CT Scan would detect WG) so he thought it was a "normal" sinus problem and he scheduled surgery for chronic sinusitis (9-18-19 surgery prep, and 9-24-19 surgery). During surgery he found that the problem was not sinus but granulomas, so he did non proceed with surgery. They made a biopsy of the granulomas and found they were not cancerous. He put in an ear tube in my left ear. I went home and he ordered some blood tests, and when I went back to see him again (10-2-19), he informed me of my condition; Wegener’s. He referred me to a rheumatologist.
    Tuesday 10-8-19, I went to my first appointment. When I found out about my condition on 10-2-19, my ENT doctor put me on Prednisone (20mg/3 times a day until I went to my rheumatologists appt.). My rheumatologist changed it to 60 mgs/one time a day in the morning, and they ran more blood, xrays, and urine tests. I will know results on 10-14-19 – next appointment. Right now, I still have my ears clogged, but they have cleared some and I can hear someone 4 or 5 feet away form me. I am not having sinus pain, and the inflammation has gone down, but I still can see some inside my nose. Crusting builds inside my nose. I stopped working since 9-17-19 (before surgery), but I went back on 10-9-19. My septum has collapsed some. I guess I will know more on 10-14-19. I am not sure if what has been done is the correct thing? What else should be done? Dr. said I will be put on Methotrexate starting on 10-14-19. Would symptoms come back if I don’t take Prednisone anymore? How soon will Methotrexate start working? Will I lose the partial hearing I got back once I stop Prednisone and start Methotrexate? I will appreciate any advice you can give me. Thank you very much. I am 57 years old, female, and I am a high school teacher (Teach Spanish). I stopped working since September 17 and went back on 10-9-19. How can this affect my health?
    Last edited by Lea; 10-22-2019 at 01:08 AM.

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    Default Re: In process of being diagnosed

    @Lea

    The good news: You have a good chance of getting back to pre-wegs condition. The less than good news: It may take awhile.

    If your doc starts you on methotrexate, you should notice improvement within a week or two. However, you’ll probably stay on prednisone until your symptoms are under control and your labs are close to normal. Your hearing should return to some degree, but may not fully recover. One side effect of methotrexate is hair loss. Ask your doc about taking folic acid to minimize it. I didn’t lose much hair, but it got coarser.

    You should ask your doc about sinus rinsing to reduce the crusting and help keep your sinuses clean. You may also want to ask about taking a decongestant and an antihistamine to keep your sinuses dryer.

    Also, ask your rheumatologist about his/her experience treating wegs. Consultation with or referral to a vasculitis specialist may result in more effective treatment. The Vasculitis Foundation website can help in this regard.

    Good luck. Let us know about your progress.
    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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    [QUOTE=Pete;115614]@Lea

    Thank you for your reply. I have read several of your posts and also other members posts and am amazed at how much people know about this condition and how they are willing to provide all the information that they know. My tests showed that none of my organs are affected. It is considered a limited gpa. I will be taking prednisone - same quantity - for how long? I don't know. I just took Methotrexate this week for the first time. Doctor also gave me folic acid and I am low in vitamin D, so I am taking vitamin D. How long do you think it will take for my ears to improve? Would I need to get a hearing aid? How soon can a person get one? Thank you again.

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    Default Re: In process of being diagnosed

    @Lea

    Your case sounds a bit like mine, although I did have some lung, sinus, and ear involvement.

    At this stage if the disease, don’t be in a big hurry to get off prednisone. It will knock down the inflammation. Just watch what you eat, as your appetite will increase.

    I had some hearing loss prior to wegs thanks to the Army and some steel mills. I have about a 40% hearing loss. An audiologist can test your hearing and assess your need for hearing aids. An otolaryngologist (ENT) can see if anything is structurally amiss with your ears. Unfortunately, neither Medicare nor my health insurance covers them. Mine cost about $3,200 apiece. They help, but they’re not perfect. At home, I hear pretty well. In crowded environments, I hear everything and understand very little.
    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: In process of being diagnosed

    I'd be concerned about having to take immunosuppression medications and working in a school full of kids with the flu all the time.

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    Default Re: In process of being diagnosed

    Welcome to the forum, Lea.

    As far as I know, it takes 6 weeks for mtx to start working. Reducing the pred should be careful and gradual according to your improvements.

    The concept of 'Limited GPA" is wrong. No GPA is ever limited and it should be treated in the best way possible.

    So far it sounds like you are getting the right treatment. It just takes time. If after 2-3 months on mtx you will not see improvement then your dr. Will have to consider a stronger medicine. But in most cases mtx works well enough.

    Keep an eye on your blood tests, especially your creatinine. We just need to keep an eye on our kidneys.

    Ask whatever 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: In process of being diagnosed

    Thank you Alysia. Yes, I read about "Limited GPA" and many agree with you; It is a wrong label to use, GPA is GPA. I think I am going to need a lot of advice since all this is new to me. I had never heard of WG and I had never had any problem with sinuses or anything like that. I considered myself a healthy person, liked to to run and exercise, ride the bike, and after all this I really miss exercising. I have been so busy dealing with the news and trying to understand why? that my whole life around me has kind of stopped happening, besides my work. Thank you again.

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    Default Re: In process of being diagnosed

    Yes, I had this concern. I have not gotten the flu shot and I always get it every year. I am not even sure if I can get a flu shot with the new medication that I am taking. I will have to talk to my doctor about it.

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    Default Re: In process of being diagnosed

    I asked my Dr. about travel to some 3rd world countries. Which lead to a discussion about vaccines in general. It came down to being advised not to get any that where "Live".

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    Default Re: In process of being diagnosed

    I have never heard or researched limited gpa, and it sounds like Alysia is correct. You either have it or you don't. However, we were introduced to a middle aged man who developed gpa and has routine rtx infusions, but other than the initial episode, he has not experienced any significant symptoms.

    Godspeed to all

    Sent from my moto z4 using Tapatalk

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