Hello! And thank you to all!

[pfries]

Hello to all my name is Pat,

1st of all, thank you for being here and sharing stories, giving support and in all just holding each other up.

I did not present quite atypically from what I have read on the forum here.

I had a sudden flareup of severe joint pain, swelling, tendinitis type symptoms, and abdominal pain. I had gotten to the point that I could not bear my own weight to take care of myself and I ended up hospitalized. Unfortunately, they focused on the abdominal pain and ended up taking my gallbladder out. The pain medication they were given me at that time did very little . The Toradol that the doctors had prescribed was my only saving grace. Within a matter of 24 hours of being released from the hospital I was back it's again I could not take my own weight. They discovered I had pneumonia. I was hospitalized again and was started on IV steroids and antibiotics. The steroids helped better than anything else, after another 5 days in the hospital before being released. As I tapered off of the steroids my symptoms once again flared up and within 4 days was back to the hospital yet again. By this point my hands were drawn up and useless. My hips and lower back were killing me. I couldn't raise my arms above my head and I felt like death warmed over. As is typical. I went through tests upon tests upon tests with my doctors as I was in and out of the hospital. I remain none high-dose oral steroids that we kept trying to taper me off of, but couldn't because I would end up back in the hospital each time. I began to suffer from eye pain, ear pain, and blurred vision. At this point we were about 5 months in. My hematologist oncologist did a bone marrow biopsy due some of the findings in my blood work. We discovered I had a form of cancer called multiple myeloma. As we got further along more doctors into the mix. More tests being done more biopsies being done and finally getting in to see the rheumatologist then referred me to a nephrologist. A kidney biopsy confirmed the diagnosis of GPA. In a certain ironic twist, the cancer saved my kidneys because we started a Cytoxan regimen to get the cancer under control. I still have much difficulty walking doing daily tasks and taking care of myself. I am both thankful and blessed with the family, children and loved ones that are fairly understanding and have been a tremendous support through this. My rheumatologist still suspects that there's more underlying than just the GPA and she is continuing to dig into things.

In hindsight some of the more common signs and symptoms showed but they were minor and did not raise any flags for me. I have since learned to be overly thorough in describing what is going on with me to my doctors. I have one more round of Cytoxan and IgG and waiting to hear from the rheumatologist as to what comes next.

I apologize for any typos or messed up words as I am learning to use a dictation software because I cannot type due to joint pain.

Thanks for reading through my short abbreviated run-through of what's going on with me. I look forward to reading and spending time on the forum.

Well wishes to all, and may tomorrow be brighter and better than today!

Pat

[Alysia]

welcome to the forum, Pat. thank you for sharing your story. wow. crazy ride. thanks God they have found out what's going on and gave you the right treatment.
Is the treatment for the cancer and for wg the same one, ctx ? how are you doing so far with the cancer and with WG ? are you still on steroids ?

[Gab122]

HI Pat, welcome to the forum! - I'm new here myself and have found it a great blessing to have a place to ask questions and recv support from others going thru the same disease.

Wishing you the best!
Gabrielle

[pfries]

Is the treatment for the cancer and for wg the same one, ctx ? how are you doing so far with the cancer and with WG ? are you still on steroids ?

One of the old front line treatments for My Cancer is CTX, My Hematologist/Oncologist is a brilliant Dr. knowing that CTX can also be used for many auto immune disorders and I was in suffering renal insufficiency as well (around 30%) he decided on CTX, he then pushed for IgG with the insurance company as well.

I am down to 17.5mg Prednisone which is the lowest I have been able to get in just over a year. Many of the symptoms from the cancer and the WG overlap so it is difficult to tell where I am at.
I just recently was able to get the rheumatologist into the mix and a second round of blood work is on the board for my next visit this coming week.

My Nephrologist said that the CTX saved my kidneys with how aggressively my WG came on prior to diagnosis.

Thanks to you and Gab122 for the warm welcome.

[Middlesista]

Hello Pat - Sounds like your treatment regime is making improvements in your condition, glad to hear your kidneys are better and progress is being made.

As others have said - lots of support and great information here. Sorry you had to join the club but know you are not alone.

Take care

[Alysia]

Thanks God for a wise dr. I am glad that you are doing so much better. Keep it & please update us.

[annekat]

Welcome, Pat. I've been with this forum since my dx in 2011 and truly feel I'd be lost without it. It makes my day much more meaningful and I feel much less alone, not to mention getting
a ton of knowledge about what I have, knowing that it is not the same for everyone and that there are many variations in severity, symptoms, and treatments. If you have to have Wegs, I'm glad you found us, and I hope you stick around!

[gilders]

Welcome Pat!
It is funny how you see your cancer as saving your life as I am similar in believing my renal failure saved mine (it was my nephrologist that figured out I had Wegener's).