Hello from another new member

Hello and thanks for adding me.
My journey on this crazy ride actually began back in 2009 when I had problems with my tears ducts and had to have Jones tubes put in both of my eyes. I attributed this to having repeated eye infections. Fast forward to 2018 when I got the flu in January followed by months of sinus infections that never seemed to clear up or respond to meds. By May I began having ear infections and started losing my hearing in my left ear. In September I felt so bad that I ended up in the hospital with double pneumonia and where they suspected Wegener's which was confirmed in October.
So here I am today introducing myself and still having so many questions and being appreciative of finding this wonderful forum.
Since November I have gone from 60 mg prednisone down to 5 mg and am on 20 mg methotrexate and folic acid.
So that is my journey so far. I haven't seen any great improvement yet but I remain hopeful and look forward to learning and understanding Wegener's more. Thank you so much for affording me the opportunity to join all of you!

Welcome Tricia,
Your symptoms are how it all started for me 24 years ago. Unfortunately my diagnosis and treatment took so long that it had spread to other parts of my body.
I'm sorry to hear that you haven't seen much improvement yet. I must admit the damage done to my hearing and sinuses all those years ago hasn't really improved either.

Although it must be destressing having a lack of improvement, just remember that without diagnosis or treatment things could have become MUCH worse, very quickly (not that I'm belittling your current problems).

If you are having other Wegener's symptoms, then many of those can improve with treatment and remission. It's good to see you're now down to 5mg pred. This is the highest dose I can tolerate.

Keep us updated and remember this is a friendly forum. No question is silly and we don't mind answering the same questions time and time again - i.e. you won't get a snotty reply telling you to search for the answer yourself as it's previously been discussed.

Thank you so much for your encouragement gilders! I know things will get better and better! Even though I am 7 months in to this, I still have alot to learn.

I do have a question. My PR3 C ANCA went up on my last lab from 60 to 100. Are these numbers super important or is fluctuation normal.

Thanks. I am sure I will have a few more questions down the road and I am so happy to have found this forum. I use to be in a group on FB but I permanently deleted my FB.
This forum is great!

Welcome to the family, Tricia.

C-anca and Pr3, if positive are indicators of wg activity. If they have become higher, it means that the wg is more active. It goes together with what you tell, about not seeing an improvement. I think that it means that methotraxat isn't working enough for you. The higher preds kept your wg less active and now that you are down to lower preds, the wg has becomes more active.

Mtx didn't work for me either.

I think it means that you need to consult with your wg dr. - I hope he is a vasculitis expert - about changing treatment.

For me and for many others - rituximab makes the difference.

Please update us.

Thank you for your response Alysia. I think I will have to ask my rhumatologist to run my labs more often. She does them every two months and this is only the second time she has done the PR 3 and ANCA.
My platelets are looking better and my sedimentation is now normal. The other concern I have is that she mentioned twice now that there are small traces of blood in my urine.
Are there other things on my lab reports that I should keep an eye on? None of my doctors have ever had a patient with Wegner's which is a huge part of what has lead me to this forum.
I want to make sure I educate myself and have a better idea of the questions to ask my rhumatologist.

Hi Tricia,
I’m sorry you are in the club but happy you found this place. The people are so awesome & everyone here has different symptoms of WG but a life time of experience.
I do hope you start feeling better soon. It just sucks to feel constantly beaten. Please keep us updated!
Natty


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Hi Tricia, and welcome.
Its never good news when someone else comes down with this disease, but you will find a wealth of knowledge, and some answers from the awesome people who frequent this site, my Pr3 has risen a lot over a couple of months, I was a bit concerned, but the rest of my blood work was great, especially my esr and crp (inflammatory markers), it has now come down a little, but a bit lower would be better.
If you are feeling good, go with it, but if you start to ache or feel unwell, ring your rheumy to check, better to be safe than be back in hospital.

Regards Woz...

Thank you for the welcomes Woz and Natty!
Woz, I really appreciate you sharing that your Pr3 also fluctuates. I saw mine go up and totally freaked out. My other numbers are going down and that made me happy. I do think having confidence in your doctor is really important and I am still not sure about mine, but I have only seen her for 6 months and she does seem to be trying.
I am so thankful that only my eyes, nose and ear are affected. I know it could be a lot worse. I am also thankful that this all occurred after I retired.
I have wonderful support from my husband and now a great group here. What more could a person ask for!

My pr3 has only fluctuated one time in 6 years, I was trying to go drug free at the time, ask your rheumy how much experience she has had with wegs, a second opinion wont hurt you if you are unsure, its better to ask a silly question, than regret something you should have asked.

I write things down to ask the rheumy, as I always seem to forget something.
Good luck
Regards Woz...

Labs every 2 months are indeed not enough if you are not in remission. Ask to do your labs once a month until you will see that your wg is calming down.

The most important one to check in your labs is the creatinine (kidneys related), to make sure that wg hasn't affect the kidneys.

You can also ask to check your egfr (kidneys related), ALT and AST (liver functions - might react to meds or to wg flare), Hemoglobin, ferritin, fe-iron, transferrin (anemia related - can indicate wg activity), CRP and ESR (inflamation markers).

If your wg dr. Is trying to treat you well, then maybe she will be willing to consult about your case with vasculitis experts. My wg dr. Made a consultation about my case at least twice (that he told me about).

Dont get stressed about wg. It can be treated. Just keep an eye on it, learn as much as you can, prepare questions etc. Also, "pray, hope and don't worry" (quote of someone wise).

Hi, Tricia,
I can't add much to the above, but just found your post and wanted to welcome you to the forum. My WG/GPA started out like yours, with ear infections and sinus infections, which in my case were attributed to allergies, which I do have, but have never manifested quite that way before. But I didn't know any better and it took until 2.5 years later, when it went into my lungs, for me to get a correct diagnosis and treatment. Though I did get prednisone with the antibiotics previously, which helped, I'm sure. Since I had lung involvement along with the sinus and ear stuff, I was started on cyclophosphamide (Cytoxan, CTX), a stronger drug than methotrexate (MTX). The other very strong drug, and largely preferred today is rituximab (Rituxan, RTX), but at that time in 2011 had just been approved, or was in that process, for use as a first line treatment for WG. Besides, it is very expensive, and I doubt my very basic insurance would have paid for it, and certainly would have insisted I try CTX first. The CTX worked, along with high to medium doses of prednisone, and I was eventually switched to MTX, which has kept my symptoms under control along with a lower dose of pred. I don't know what would happen if I tried to taper off of both meds. For now, I'm OK with things as they are. The rheumatologist I'm now seeing has seen about 20 cases of WG before me, which is still not considered a lot. There are more experienced docs about an hour and a half from me, considering traffic, but I choose to stay close to home unless things become a lot more serious. You might check the Vasculitis Foundation website for lists of preferred docs which you might be able to see or have your doc consult with, if she is willing. Examples of highly thought of centers for WG treatment in the US include Mayo, the Cleveland Clinic, Johns Hopkins, and some places in Boston. I'm sure there are others. Be sure to keep us posted and ask any questions. You can find a lot of helpful old posts and threads in the archives, too. Best wishes for making progress in controlling this wacky disease!

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Thank you for the welcome Anne. I am sorry to hear that you also had your lungs affected. So far my lungs and kidneys are ok. Knock on wood that it stays that way.
According to my rhumatologist she does not feel that the insurance will pay for infusions unless we can show the methotrexate is not working. I think it is kind of silly that I would have to get worse to get better meds but insurance has gotten tighter lately. I will definitely ask her about the possibility of CTX.
As for doctors, I have heard of a doctor in Dallas who has experience with Wegener's. I am only 30 to 40 minutes north of Dallas and also hate driving in city traffic but if I don't see any improvement at my next visit to my rhumatologist, who is in my town, I might try to get a referral to the doctor in Dallas.
Once again thank you! Everyone here is so nice and helpful. I am truly appreciative.

Welcome Tricia. This is a marvelous site. Some of the people here have really had a rough go of it. They are more than willing to share their experiences. What I have learned here is worth gold. You mentioned that there were small traces of blood in your urine, and that none of your doctors have ever had a patient with Wegener's.
In my humble opinion you need to see the doctor with experience in Dallas. No matter what we share with you, we are not doctors. I wasted valuable time before seeing an expert. Please don’t make that mistake. I wish you all the best, and please keep us posted on your journey.
Masha