Hello from Chicagoland

[Captian Al]

The picture is one of our dogs-- Captain Al.
We are Laurie and Darren –Darren was diagnosed with Wegener’s in July 2013. I am his wife Laurie. I am his personal medical researcher and a frequent stalker of this forum.

Darren’s story: A formerly healthy 48 year old man with no prior medical issues.

In June ’13, Darren was unsuccessfully treated for flu/pneumonia-like symptoms In July, he was admitted to the hospital. After a month in the hospital, the verdict was WG. He had primarily lung and kidney involvement. First pred and Ctx was via transfusion in the hospital. He came home in August and is on oral Ctx and has tapered from 80 to 10 pred as of this writing. (and other meds). He also has warfarin for DVT and other ‘supporting’ meds

We sought 2nd opinions on pathology, dx, and treatment. Due to limitations of insurance, we were sent to the University Of Chicago—it’s not a major Vasculitis Hospital, but very reputable. They confirmed Wegener’s and course of treatment.

His labs and Rheumy appt. this month were very encouraging. C_ANCA negative, his CRP was .3 and SED was 46. His creatinine is improving—now 1.7. It was 3.9 during very active disease. The plan is to finish Ctx in Jan 2014 and transition to Imuran. Also, continue to step down and hopefully off pred

Darren is back to work fulltime, but easily fatigued. Luckily he is a highly skilled napper. :)

[windchime]

Welcome to the forum Laurie and Darren. As you probably know there is a wealth of information on here. The people are very supportive and open to sharing their personal experiences. They offer great comfort in times of need and most of all there is always someone on here. :thumbsup: The fatigue is currently my biggest problem also so I'm glad Darren is a highly skilled napper and that it works for him. Sounds as if the meds are all working correctly. Keep us posted on his progress.

[JeanMarie]

Welcome to the forum Laurie. It sounds like Darren is doing well & I hope he continues to a pred free recovery!

[NikkiNicole]

Welcome! You've come to the right place. I'm glad you decided to join us. This place has been my saving grace when I am feeling a bit wonky about things.
I also deal with massive amounts of fatigue day in and day out. I wish I was better at napping.

[JenG]

Hello Laurie and Darren,
I am also in Chicagoland--I go to Northwestern for my care and am pretty happy with everything they've done for me over the past 14 years. I had my first Rituximab infusion today. It has been good to see how patients who are seeing Vasculitis Centers Docs are treating their patients through this forum--very reassuring that what Northwestern is doing is right on track with the big centers. Hopefully you will have good experiences at Univ of Chicago as well. Over the past few months I have been resting a lot (not quite napping) and have come to realize how great rest really is! Please tell Darren "Hello" and to keep enjoying his naps! I'm glad to hear that his creatinine is doing better too!

Jennifer

[Captian Al]

Hi Jennifer--I hope the RTX goes well for you. That is the med we are keeping 'in our pocket' for now. Our primary Drs are with Advocate hospitals. U of C is the 2nd opinion --it was a train and cab adventure to get there each time but very worth it. We are in the far N/W suburbs. It helped confirm we were on the right path. Darren is napping yet again. I will give him your message when he wakes up :)

[annekat]

Welcome, Laurie, Darren, and Captain Al. What a great looking dog! It sounds like Darren is doing very well if he has managed to get down to 10mg. prednisone in that short a time. Some of us take a lot longer than that. It sounds like the CTX is working well..... I was on it, too, for about 8 months, but a shorter amount of time is preferable. I think 6 months might have worked for me and I could have transitioned to methotrexate, which I am now on, sooner than I did. Naps are the best! We need to take them whenever we can. All the best to Darren in his recovery process, and I look forward to hearing more about how it goes. Feel free to ask or share anything on here, and to vent or rant if need be. This forum is the greatest!

[Allisonquast]

Hello Laurie and Darren, Darren's story is almost identical to my husband Colin's journey with Wegs. Same time frame, meds, but Colin had joint involvement. Colin is also being switched to imuran in January, if we weren't going to Hawaii they would have switched earlier. Medical insurance is void if meds are changed within 90 days of travel out of the country. He too was great at napping prior to diagnosis.

[Lilly]

I suffer extreme fatique also. Depressing!

[mishb]

Hi Laurie and Darren and welcome to you both, from Australia.

Laurie, as you have been "researching" on here for a little while now, you will know that we come from all over the world and we are joined together by this one main condition.......sucky as it is :thumbdn:

Darren, what awesome progress you have made - I look forward to hearing of your eventual remission.

Happy napping

[annekat]

I suffer extreme fatique also. Depressing! Lilly, the fatigue is normal and will lessen with time. Most of us still have to be careful, even after years of treatment, that we don't overdo it, in other words, regulate how much activity we plan for a day, as we may run out of energy sooner than we'd like. If nothing else positive, Wegs is a good reason for getting to take all the naps we want so we can wake up refreshed and ready to do things again.

[annekat]

Oops, Lilly, I forgot when I wrote that that you have had Wegs for 23 years, so you know what I'm talking about! Sometimes it's hard to keep track of everyone on here.

[Alysia]

welcome Darren and Laurrie,
u2 sounds like great team together :thumbup: so I believe you can beat this bloody WG soon.
you came to the right place, with the best WG experts around the world...
do I sound like a commercial advertisement: buy 1 WG and get for free lots of friends around the world... :wink1:
talking seriously, this place is life saving for me, I wouldn't survive without it, mentally and physically.
good luck and continue to write.