What can I expect?

**DuaneHart** · 07-20-2009, 09:53 AM

I have just been diagnosed with WG about a month ago. I am now on 20mg prednisone, which I have been on for about 8 months due to Ulcerative Colitis and Crohns Disease. I have also just started Imuran 2 weeks ago. The prednisone is horrible--I have gained about 30 lbs since I started. My doctors tell me that once I get to the full dose of Imuran that they will taper me down to 10mg prednisone. I am now at 75mg Imuran and will eventually end up at 150mg. I work at Mayo Clinic in Rochester, Minnesota so I feel fortunate for that fact. I am hoping that I can gain some information about WG and to hear what others have to say. Hope to hear from someone about what I may come to expect when I am on the full dose of Imuran.

**Sangye** · 07-20-2009, 10:35 AM

Hi Duane,
Welcome to the group! I'm so glad you work at Mayo Rochester--that should save you some "You need a Wegs specialist" nagging from yours truly.

What are your Wegs symptoms? I'm sure you'll hear from everyone that 20 mg pred is very low. And starting on Imuran (a much less toxic drug than cyclophoshamide/ cytoxan) is not typical, either. They must have diagnosed you before the Wegs got too bad. Or maybe it's because you've been on pred that it was keeping the Wegs under control a bit? (More often, once they diagnose Wegs, you start on a pretty horrific regimen. I started at 1,000 mg pred. Your eyes must be bugging out right now, but I assure you that number is correct!)

I haven't been on Imuran, but have consistently heard that it's very well tolerated.

I look forward to reading your story.

**andrew** · 07-20-2009, 01:59 PM

Hi Duane, welcome to the group. Unfortunately weight gain is one of the primary side-effects of taking Pred. There isn't a lot you can do about it what with those cravings. Best you can do is try and eat the good stuff I guess rather than junk.

Normally the first Immunosuppressant prescribed is Cytoxan which is a lot harder on the body than Imuran. Great if your WG can be managed with that, that's a good start. I'm on 150mg of Imuran as well. I've never had an issue with it although some people get nausea which may be one of the reasons you're being stepped up rather than being put on the full dose immediately. Also, I guess the docs are measuing the effect it has on your blood tests.

WOW! You work at Mayo, that's very fortunate!

Where did the WG affect you?

Doug · 07-21-2009, 06:47 AM

Yes, welcome to the forum! I hope you can tell us what it's like to work at Mayo Clinic And be treated there. What an advantage!

**DuaneHart** · 07-21-2009, 07:07 AM

So many questions! I had gone to the doctor because I had the flu right around the time that Swine Flu appeared. I was tested for Swine flu but came back negative. My lungs were infected and was put on antibiotics and prednisone for that. I was also getting reddish-purplish spots on my legs, stomach and back and swelling of my ankles. Doctors did biopsies of the spots and decided it was Vasculitis. After more tests and another bout of infected lungs they decided that it was WG. The doctors feel that they found this in the very early stages and should have good results from the meds. They will be doing bloodwork every 2 weeks and keep close tabs on kidneys and things. Nonetheless, I still feel lousy and hope things will improve. I am having nausea and vomiting from the Imuran, sweating, muscle aches, etc, etc.
Working at Mayo is great. I love my job and the care from everyone there is the best. I have worked there for 3 years, but have always gone there for my medical needs.
Thank you for letting me be part of this group. I am sure I will learn alot!

**andrew** · 07-21-2009, 07:11 AM

Originally Posted by DuaneHart

I am having nausea and vomiting from the Imuran, sweating, muscle aches, etc, etc.

Eeeech, that's no fun at all. Has the doc suggested perhaps something else that might be tolerated a bit better? Cellcept for example?

**Carol** · 07-21-2009, 09:25 PM

Hi Duane Welcome to this site but of course not to being a Weggie!! I'm on 150 Imuran per day and am now down to 8mgs of Prednisolone. I finished cytotoxin chemo every six weeks about 2 months ago.I get the sweats from about 4pm each day. I'm not sure if I blame the Pred or the Imuran or being a female of 55. At least being a male you can rule that factor out. I keep getting more and more well but if I overdo it then I get the Wegeners Wobbles. My doc is very happy with my progress. My biggest step back was when I dropped Prednisolone by 5mgs and had eye problems so now I go down very slowly - I write out my calendar and end up with what the Doc ordered but much slower. Regards Carol

**Sangye** · 07-22-2009, 12:58 AM

I love the "Weg Wobbles." Excellent description.

**flana** · 07-22-2009, 06:54 AM

Welcome Duane! I too am surprised that you were started with Imuran rather than Cytoxan to begin with. Ask your doctor why. There may be some good reasoning behind it. I started with 125mg of Cytoxan, and 60mg Prednisone (way low compared to Sangye) once I was out of the hospital, along with Bactrim, Fossamax, Omeprazole and other vitamin supplements (one a day, D3, calcium). Anyways I hope you feel better soon, and keep us posted.