new member with question regarding remission

[tac]

Hi,
I was diagnosed with GPA in Feb 2019, after about 1 year of misdiagnoses. ( I had crust in nose, lung infiltrates, shortness of breath, exhaustion, joint pain, stomach problems, major brain issues, eye problems etc. In April, I had 4 RTX infusions and was given 80 mg of pred. with a taper of several months. (I am currently down to 10 mg) I really just started to feel so much better the past 2 weeks. My anca is still high but sed and crp normal. Dr. unsure that I am in remission and now questioning the diagnosis. (getting third opinion tomorrow) My question is for those of you that are in remission... Do you feel back to your old self? (semi) or are you still super sick?

[andrew]

Well that's an interesting question because it can be vastly different for many people depending on how much the Wegs has affected them. Sometimes despite being in remission you're still dealing with the after-effects. It's like fallout - the bomb has gone off and the nuclear fire has gone but your hair is still falling out and you can smell colours.

However...as for me, I feel awesome. I'm not entirely my old self but I carry on normally day to day in a job much the same as I had when I was diagnosed. Life is pretty dang good actually. For me what helped a lot was KNOWING that I was in remission. it was a good mental boost and still is.

[John S]

What was your SED rate before? Have the nasal crusts slowed down? Are the headaches and fatigue lessened?

Many of my symptoms slowed significantly after a few treatments. It has taken me about two years to feel real good though. Your mileage may vary.

Remember "Objects in mirror are closer than they appear".

[me2]

Your whole story sounds like classic GPA I'm surprised that your diagnosis is now in question. Your crusty nose should have given a nice biopsy sample or your lung infilitrate could have. Biopsy is the gold standard for diagnosis. Biopsy does not work on everyone but IF you test positive on biopsy you can be sure of your diagnosis. Nasal biopsy is a pretty easy , in and out procedure.

As to the other part of your post , Andrew said it quite well- it can be vastly different for different people. And, even work differently at different times for the SAME person. I myself am an example of that.
I was diagnosed (with nasal biopsy) 40 years ago. I did oral Cytoxan and prednisone for two years and achieved a drug free remission for the next twenty years. My life was indestiguishable from a normal person in spite of the fact that I had been EXTREMELY sick and almost died (from kidney trouble).
Then, after twenty years of complete normalcy I had a relapse and have been taking medications ever since then. For most of the last twenty years it has been very difficult . Only in recent months do I feel pretty good and have some really good days.
I'm just telling you all this so that you know there is NO expected path that you will go down. It can stay the same for long periods or change over night.
I'm guessing that your "third" opinion is from a doctor with LOTS of GPA experience ? Having someone like that on your team is absolutely essential. There is no substitute for expertise and experience with this disease.

[Alysia]

Welcome to the forum, tac.
During the first year of my wg, the C-anca came back positive. I searched this issue back then, and found that positive C-anca apears mostly in Crohns' and in wg. You have wg symptoms, so I dont see why they doubt the diagnosis.

Before wg started acutely, I was already sick for couple of years, "smoldering", so I can't relate to the question of before and after.

In my case, when I am in remission, it means that my C-anca and Pr3 are negative, I rarely have nose bleedings, no bloody crusting (although non bloody crusting do apear few times a weak), no ears or eyes or lungs infections. BUT I always have dry coughing, joints pains (more or less), and crazy fatigue. So many times I am not sure if I can call it remission or smoldering. My wg dr. Calls it smoldering. I know others around will call it remission.
Whatever...

Each one is different. Many of us have no symptoms at all. I think that most of those who are more active in the forum, still suffer relatively from wg. I guess that many come to the forum and then go because they are back to regular life. So if you dont read them here, please know that they exist.

[Masha]

Hi tac. I wrote a response to newly diagnosed above. It is meant for you and other new members too.

[tac]

What was your SED rate before? Have the nasal crusts slowed down? Are the headaches and fatigue lessened?

Many of my symptoms slowed significantly after a few treatments. It has taken me about two years to feel real good though. Your mileage may vary.

Remember "Objects in mirror are closer than they appear".


My Sed rate is lower at about 30-35. It was at 55-60. My c-anca was at 1180, now at 160, so it appears that my numbers are better, my new Doctor is calling it a partial remission, however this past weekend I was very sick again, it seems like I go a week feeling pret5ty good then get sick again...

[tac]

Thank you.

[tac]

Thank you, My third Doctor has a education from John Hopkins, she is a Dr in a hospital here and is working closely with my pulmanologist (the man who found the WG, he is the one who ran the c anca) My 1st Doctor had no idea, the 2nd Dr. has 1 other WG patient, and this Doctor has no active WG patients. I am in San Diego, I have already gone up to UCLA and met with the Director of their vacsulitis center, I can always switch up there, if I get no where here, its a 3 hour drive though.

[me2]

Maybe you can make the longer drive just until you get things under control and then manage things closer to home once you are doing better. I myself made a 3-4 hour drive for many years and now use a doctor closer to home for most of my care. I only make the LONG drive when I need help specific to GPA. (My Rheumatologist)
It sounds like you are on the right track. RTX can take time for some people to really start to notice a difference. The first series may seem like it isn't helping. That was the case with me. I was so sick, and it didn't seem to help compared to Cytoxan I was very discouraged and didn't think it was going to work for me at all. But it did- eventually.
I'm hoping it kicks in soon for you.

[tac]

Thank you for the advice.:)

[John S]

My Sed rate is lower at about 30-35. It was at 55-60. My c-anca was at 1180, now at 160, so it appears that my numbers are better, my new Doctor is calling it a partial remission, however this past weekend I was very sick again, it seems like I go a week feeling pret5ty good then get sick again...

Atmy sickest, my SED rate was 107. In remission, it is consistently 8. Nasal crusts are rare. Headaches are sporadic but not as devastating. Rituxin baby!