Thankful to find this forum

[DStaelens]

Hey Folks,
After 2 1/2 years of misdiagnosis, I was diagnosed in February with possible vasculitis, then confirmed for GPA in May. It started with what was thought to be pneumonia, which turned into the worst joint pain I've ever experienced which was thought to be some sort of reactive arthritis. From there constant issues with losing my voice, pain in my lower back which was basically dismissed by doctors since there were no stones or bacterial positives. My eyes lit up so red that I looked like something possessed. Then came odd rashes on my hands that would crop up anytime I caught a cold or felt off. I had several respiratory things crop up along the way, all the while being misdiagnosed and thrown on some sort of antibiotic and Prednisone. I've never been a sickly type of person, I always recovered from something within a 2 to 3 day period. I finally stood my ground and knew something was off, told the doctor to re-review the last two years and the horrible joint pain I was constantly having. He sent me to an RA that took some tests, luckily during that time a bad purple rash appeared on my legs that tipped off the RA.
Anyways, the RA got me into the appropriate facilities that re-tested and confirmed, they put me on Rituxan in June, still waiting to see how it works. During this time I've been honestly rather scared and tripped over this web site. I can't thank you enough for the past posts and how much they have helped me understand and calm my nerves just a bit. It's been a rough ride the last 2 years, 2020 has added to that, I'm still betting Alien invasion is next on the wheel of what the hell is next. Anyway, just wanted to say hello and again thank you.

Dave

[andrew]

Hi Dave
Thanks for joining and very happy that you got help from previous posts. Good to see. You've certainly had a long couple of years going through all that. Well done on insisting on a review. hopefully you don't have to do that too often.

Will be keen to see how the Rituxan works for you. Seems to be a great drug for many. I have no personal experience with it but seems to be great :)

Also - sorry your post got automagically moderated. Nothing personal :)

Welcome!
Andrew

[Pete]

DStaelens

Welcome to the “club”, Dave. Hope the rituximab proves to be an effective therapy for you. Reading through your symptoms, I thought that there are many folks on here who can relate. The search facility here is good, so you can find others who have dealt with symptoms similar to yours.

If you don’t mind my asking, where are you from? Where are you getting treatment?

Keep us posted. Good luck!!

[me2]

Welcome to our hang out Dave. It's a great place for information and the company of people with similar experience. There has never been a better time to have Wegener's. (Gosh, that sounds like I am trying to encourage people to get WG. -- But wait, there's more...)
Rituxan was a big step forward and now there is another medication soon to be available that many are thinking will be another revolution of treatment- Avacopan. Of course, being the new kid on the block , it is not a certainty. But a very good reason to hope.
Some people , like myself , have used up the other options over the years and this new medication is even better news for US.
My rheumatologist is expecting Avacopan to be really good news for all of us.

[DStaelens]

Thanks, and no worries, no offense taken. :-)

[DStaelens]

@DStaelens (https://www.wegeners-granulomatosis.com/forum/member.php?u=12268)

If you don’t mind my asking, where are you from? Where are you getting treatment?

Keep us posted. Good luck!!
Thanks Pete, from upstate NY between Utica and Syracuse. Getting treated at Upstate medical. They have been fantastic.

[DStaelens]

Thanks me2, that sounds exciting, will look into that tonight. :-)

[seied]

Glad you're here and in the right path.
I was also misdiagnosed 4 times before I finally got the right doctor. So incredible lucky this ordeal took only 5 weeks.

I did go back to see all those doctors that misdiagnosed me.
Brought brochures, gave them some Weg training and made sure they know about the missed opportunity to be a hero and how important it is for them to be on the lookout for patients suffering from autoimmune disorders.

[marta]

Hi Dave,

I feel absolutely the same about this forum.
I got diagnosed in 2010, and my first foray into Wegener's was a Facebook page, but I absolutely hated it as it felt like a 'who has it worse contest'.... not my scene.

I found this forum, and it was the best thing that happened in my early days. I made friends, I got support, it was non judgemental, and everyone sincerely wanted to help.
I was told things I didn't want to hear, but it was those things that finally pushed me to seek a new doctor who wasn't using me as their WG schooling project.
Because of the people on here, I was convinced to look for a better doc, and found the best doc. IMHO she's truly the best.
Because of finding said doc, and also the openness of the people on this forum, we ended up publishing a paper in a French medical journal showcasing the power of the patient driven research, and how close it is in its findings to expensive researcher driven research.

This forum truly is a magic place where good things happen and great people hang out.

I wish you success with treatment, easy collaboration with docs, and joy in life.

marta

[annekat]

Hey Folks,
After 2 1/2 years of misdiagnosis, I was diagnosed in February with possible vasculitis, then confirmed for GPA in May. It started with what was thought to be pneumonia, which turned into the worst joint pain I've ever experienced which was thought to be some sort of reactive arthritis. From there constant issues with losing my voice, pain in my lower back which was basically dismissed by doctors since there were no stones or bacterial positives. My eyes lit up so red that I looked like something possessed. Then came odd rashes on my hands that would crop up anytime I caught a cold or felt off. I had several respiratory things crop up along the way, all the while being misdiagnosed and thrown on some sort of antibiotic and Prednisone. I've never been a sickly type of person, I always recovered from something within a 2 to 3 day period. I finally stood my ground and knew something was off, told the doctor to re-review the last two years and the horrible joint pain I was constantly having. He sent me to an RA that took some tests, luckily during that time a bad purple rash appeared on my legs that tipped off the RA.
Anyways, the RA got me into the appropriate facilities that re-tested and confirmed, they put me on Rituxan in June, still waiting to see how it works. During this time I've been honestly rather scared and tripped over this web site. I can't thank you enough for the past posts and how much they have helped me understand and calm my nerves just a bit. It's been a rough ride the last 2 years, 2020 has added to that, I'm still betting Alien invasion is next on the wheel of what the hell is next. Anyway, just wanted to say hello and again thank you.

Dave

Welcome, Dave! So many things sound familiar about your case and others don't, or I didn't have all the same symptoms like rash on the legs, though I knew about them from this forum. After 9 years I still find others' cases interesting in that they are all somewhat different and each has something to learn from. I hope we continue to hear from you on a regular basis, and stay safe!

[Aneinu]

Welcome Dave

Those two plus years must've been excruciating, especially the unknown. Knowing your condition certainly helps somewhat. As an aside, it is a sorry state that there are still medical personnel who can't diagnose properly. Breathing issues, joint pains, rashes..... Someone there should've at least entertained the possibility. Regardless, glad that you are under proper care now and feeling somewhat better.

Godspeed to you, this is a great group!

Sent from my moto z4 using Tapatalk

[Aneinu]

Welcome to our hang out Dave. It's a great place for information and the company of people with similar experience. There has never been a better time to have Wegener's. (Gosh, that sounds like I am trying to encourage people to get WG. -- But wait, there's more...)
Rituxan was a big step forward and now there is another medication soon to be available that many are thinking will be another revolution of treatment- Avacopan. Of course, being the new kid on the block , it is not a certainty. But a very good reason to hope.
Some people , like myself , have used up the other options over the years and this new medication is even better news for US.
My rheumatologist is expecting Avacopan to be really good news for all of us.Thanks,

Our experience with avocopan was ok, but not great. He did experience flare ups still. Now, he is on a cousin of rituximab, the name slips my mind, and thank God, doing very well.

I heard or saw I think that there can be various strains of GPA, and how one responds might depend on that. That's why many of us here have different cocktails of medicine and drugs. Seems the jury is still out on this and there is plenty more to learn.

Godspeed to all

Sent from my moto z4 using Tapatalk

[me2]

Thanks for the update. I agree. As a new treatment there is still a lot left to learn and be worked out. Thankfully we have this forum to share information. I have learned more here than I have from my doctors.