In process of being diagnosed

[Lea]

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?

[Pete]

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.

[Lea]

[QUOTE=Pete;115614]@Lea (https://www.wegeners-granulomatosis.com/forum/member.php?u=11205)

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.

[Pete]

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.

[seied]

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

[Alysia]

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.

[Lea]

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.

[Lea]

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.

[HSD]

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".

[Aneinu]

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

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[Alysia]

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

Some docs use the "limited GPA" concept when there is no kidneys' involvement. But we all know that WG can be life risking even without kidneys' involvement and that it can spread to more vital organs if it is not treated.

[sshiveley]

Lea- I, like you, considered myself healthy too, what a throw back to watch my life being turned upside down. You are in the right place joining this group. I went back to work in the ER after being off during my biopsies and Retuximab treatments, have had to up my Prednisone just when I thought I could get off it totally, not going to happen at least for awhile yet. Working in the environment that I do, I am at risk for contracting all kinds of illnesses that people come in with. I wear a mask in triage if patient is coughing, has traveled, high fevers etc but I am still at risk. ER is all I know but looking for a different position in the system to keep retirement funds. I am one of those who will have to work until God says I am done here. LOL. I know its tough trying to figure out this GPA, I am still learning. Good luck, keep good thoughts, a positive attitude, be it hard at times, makes a world of difference. Sherry

[Janzian]

Pete -
Army?? my husband gets his hearing aids for free from the VA! He wasn't in the service very long, but didn't even know about VA benefits until 4 years ago. Time to check it out,

jan

[NatriceRomeo]

Hi Lea,
Welcome to the forum! I too had been diagnosed as “limited GPA”, this was 23 years ago. The thought being that no major organs are affected. I even had one Dr say that all the tests that came back positive to GPA were false positives because I was not in renal failure & he did not believe I should be treated. Luckily for me he wasn’t actually my Dr. Alyssa is correct-they no longer use this terminology because things can change so quickly.
As for working in the school-I work in health care and am around sick people all the time. I can tell you I have only gotten sick from a patient once. I use extreme hand washing techniques and am very particular about my personal space. I will say though, I can pretty much guarantee whenever my 5 year old gets sick.. I will get it much worse than her. So I also try & keep her as healthy as possible.
Natty


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[Lea]

Thank you natty and I am glad to hear this. With students, even when I did not have GPA, I was always very careful. I guess I am being extra careful now.