Hello from Tucson, where there is snow on the mountains today

[brettgrant99]

I have always suffered form allergies, asthma, etc. Since August, my allergies have been bothering me. At the beginning of November, joint pain and a rash started up. My primary were very concerned about rash, not so much about the joint pain. Sent to the dermatologist where the results were inconclusive. Toward the end of November, the pain was very bad, so I made another appointment with my Dr to discuss pain management. He took one look at me and said something was wrong and then ordered tons of blood tests. I get the results on email and they showed up on Sunday, Dec 15th. C-ANCA 1:640, PR-3 >100. I sent the results to my brother who is an ER doc. He told me it didn't look great, but not to panic.

I get a call from my Dr on Monday, he is trying to set up appointments for me. That is when I really started to worry. I saw the Nephrologist on Tuesday. He confirmed that he could see it in my kidneys. He calls and ups the appointment with my rheumatologist. I had set up the appointment with the RA doc, but it wasn't until the middle of January. I then saw the RA on Wednesday. He wants to treat with Rituxan. Started me on steroids right away. Sent me off for more blood tests to make sure Rituxan would work. Trying to accumulate info from my Pumonologist, Dermatalogist, etc.

Its been a whirlwind. First time that doctors are calling me.

I think that my wife is more in shock than I am. My spirits are quite high. She is kind of in a stupor. Any suggestions for helping her out?

Thanks,
Brett

[Dirty Don]

Hi Brett, welcome to THE Weggies Club of the World! Well, kind of...glad you found us, sorry you had to do so. I'm not far from you in Surprise, NW of PHX. I go to Mayo, so do consider that if your docs are the least bit hesitant or doubtful. Mayo and Banner saved my life. Sounds like you are on the right track already though. Don't know the severity of your case, but rtx just might be too strong to start with as there are others, I'm on methotrexate (mtx) and am doing well. Had sinus and lung issues and early symptoms like yours, no other organs tho. If your kidneys aren't up to par, then rtx is where they go as mtx can cause problems there.

As for your wife, she will feel as if she has this too...but if you can bear the load, you will be able to get her to see that this is not a life or death situation as WG can be treated to a standstill, tho there are no cures at this time. Be honest with her as there will be times you don't function like you want...she needs to be attentive but not overbearing as you "look fine, but feel like ..." on the inside. Keep her actively involved and informed in and of your journey.

I like your attitude, you will need it often. Best to be upbeat as much as possible...maybe locate the recent thread on 'living one day at a time' choices...works much better for many of us! If you have questions, ideas, or just want to vent, this place is always open as it's worldwide blog. There's a lot of experience with all aspects of WG on here. And sometimes, we just need a reminder or a pat on the back that things are really alright...it's just the NEW NORMAL I hear being bandied about nowadays a lot! LOL!

Best to you, come on often!

[windchime]

Welcome Brett. I second Don's thoughts. Great forum with tons of info. Wonderful people who provide outstanding support. Always someone on here as there are members from around the world. Keep us posted on your condition.

[mishb]

Hi Brett and a big welcome to you from Australia.

I'm sorry that you had the need to seek this forum out, but so glad that you did.

It sounds like things are moving very quickly for you, which can be daunting in itself - however, this is the best result for you.
Many people are not diagnosed correctly for years.

I also 2nd Don's response (Or I should say 3rd now). Don is correct in saying that you need to find doctors that are familiar with WG and who see many patients.

Best of health to you in the coming weeks and I hope Christmas and especially 2014, are pain free.

[annekat]

Welcome, Brett.... I agree with Don about your great attitude, and am glad you found us if you have to have WG. Everyone has said the important stuff, but I, too, hope you come on here often with whatever questions, stories, or observations that you have. Also, your wife might be comforted by reading some of our posts and threads and seeing that most of us are leading fairly normal lives despite having WG. She is of course welcome to get on here and say things or ask things, too; there are several spouses and parents of Weggies who join in the discussions. Keep us updated!

[Alysia]

Hi Brestt,
welcome to the forum, best experts of WG are here.
the beginning is so scary... but later it will be more easy to you and to your family.
I think that RTX is a miracle med and that it is best idea to get it. if you catch this nasty illness at the beginning, then you can reach remision soon enough.
good luck and continue to write.

[Debbie C]

I Brett,I want to also welcome you here. Don is right about everything he said. And with you brother being a dr. also he might be able to get you good drs. or even get you into the Mayo Clinic sooner if that's the route you choose to go.Tell your wife she can also come on her if she has any questions,concerns or also wants to vent,she is also a part of this too. Good Luck on your treatment, hope you feel well enough to enjoy the holidays.

[vdub]

Wow, snow in tucson! We were there a few weeks ago, but have since moved our RV to Needles. Very nice here -- mid 70's.

You will likely see many, many doctors in the next few months and have more blood pulled from your arm than what you thought you had. I'm sorry you are joining the club.