diagnosed March 15 2015

[djasher2000]

My name is Joey. I am a 40 yo stay at home mom of 3 and wife to a wonderful husband. I have Lupus, RA and Sjögrens. I went to the hospital in Saturday March 15 for what I thought was Lupus pneumonitis. I was diagnosed with WG disease. My husband and I were floored. Even more so when we got home and read up on the subject. I have my 2nd appt with my lung dr tomorrow. I am on several meds such as Cellcopy and Methotrexate for my Lupus. Is it true that I may have to take Cytoxin? My kidneys and lungs have already been affected. I've also read about plasmapheresis. In what case is that used? I already had one terrible disease that keeps me from not working now I have this scary WG. How does everyone cope? Sorry for all of the questions I'm just very overwhelmed. I've bearly had a chance to get used to Lupus (diagnoses 6 years ago) much less WG. Thanks in advance for all of your input.

[Pete]

Hi Joey!

Welcome to the Forum - a great spot to learn, share, and vent about GPA/Wegener's.

The medications you're currently taken are also used to treat GPA. Your doc may up the dosage or switch you to other meds. Since you're already on methotrexate and cellcept, your doc may want to use rituximab, a biologic, instead of another cytotoxin such as cytoxan.

Before you see your doc again, it would be good to write a list of questions (especially about meds and their main and side effects and interactions) you need answered. Don't be afraid to ask "dumb" questions.

Good luck and better health.

[Mas78]

Welcome to the group Joey

Pete's pointing you in a good direction. My Rhumy has told me if I would have gotten sick now rather than 14 years ago he would have put me on Rituxan instead of the high dose of Cytoxan. he said it doesn't have as many potential side effects, but each case is different.

Sorry to hear you have all those other things going on to. I hope they can get everything straightened out for you quickly.

[annekat]

Welcome, Joey. You have come to the right place. I'm so sorry you are being hit with another one of these rotten diseases after what you have already been going through. RTX seems to be the preferred med these days, but there may be some reasons for taking CTX at least for a time. Most seem to feel it works a little faster to get severe symptoms under control. Then you can always be switched to RTX as more of a long term solution. It is more of a process to get it approved and to have it administered. CTX taken in pill form is quick and to the point, though it can also be given by infusion. I can't say much more about RTX, having never taken it, but I've read of a variety of approaches to its use on here. It is worth investigation, I'm sure. If you do end up taking CTX, it may not have to be for long.... for me, the side effects were some nausea and dizziness, but I got used to those after a couple or three weeks, and I was sick enough to be in bed most of the time anyway. And the high dose pred I was on gave me some energy and kept my appetite up despite these effects. The important thing with CTX is to drink lots of water every day to combat the buildup of the toxin in your bladder and avoid bladder cancer in the future. I haven't actually heard of that happening much among people here, but don't know the statistics. I think all the meds have dangers associated with them and people may have different negative reactions to them. Best of luck, and keep us informed of how things go.

[gilders]

Welcome Joey. It sure looks like you've got the winning hand in Auto-Immune Poker!
As you're already on some meds that are used for WG, it has probably helped prevent WG getting too severe and causing too much damage.

I'm guessing you must be under good care as your Drs could easily have missed WG, thinking Lupus could have been the root of any problems you're having.

[mishb]

Hi Joey and welcome,

I also have a lupus diagnosis, which was a year after my WG diagnosis, which was a year after my RA diagnosis

For me, the meds have remained basically the same, however these meds will probably be my friends for life, because of the mixed connective diseases.

I'm glad they have finally figured out what the rest of the problems were.
You are no longer alone in this journey, the people on here are awesome

[Dkathleen]

Welcome Joey. I was diagnosed with MPA in November 2013. Twenty years ago, I was diagnosed with scleroderma (CREST) with mild interstitial lung disease. I was fortunate and did not have to be on long-term meds for the scleroderma. Rituximab and Prednisone worked wonders on my MPA (microscopic polyangiitis). Cellcept is my maintenance medication.

I am am glad you found this forum. I wish you well.

[whatthewhat]

Welcome, Joey. I am so sorry you have the diagnosis, but this forum is an excellent resource, both in information and in support, now that you do know you're a "Weggie" as well as a...Lupie? RAie? Sjogrie? Big hug from California to Missouri. Hang in there! Diagnosis is often the toughest time.

[Jayne 14]

Welcome Joey
You certainly have a whole lot going on : but at least u now have us lot
Support & advice
A place to rant & vent
And hopefully people who understand what your going thro
Big big hugs from me xxx


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