Update: Another year with Wegeners Granulomatosis

[Gragnoc]

Last weekend was my 17 year Anniversary of my Wegeners Granulomatosis. This time I decided to just have a small get together compared to recent years. On July 21st, I decided to bring in bagels to the office for my co-workers and I answered questions few of them asked. Then on July 23rd, I spent the day with my two of my closest friends to whom I care greatly about.

The past year had its ups and downs of course. Again like the 2014 and 2015, I had to go to the Mayo Clinic Infusion Center for Rituxan treatments, because my labs came back showing GPA activity and I was having problems. My best friend and his fiance came with me then drove me home after the treatment was done for the day. I greatly appreciated them helping and took them out for sushi after the treatments were done. Unfortunately, I am still having a lot of problems and I have to return in a few days, plus see a new PCP locally. A lot of my problems I am having are with my hips, knees, and sinuses.

However, I recently got my Motorcycle License with 3 Wheel Restriction and purchased a CAN-AM Spyder RTS which I am enjoying whenever possible.

I am hoping next year is better than the last.

[Debbie C]

Happy Anniversary !!! It has been 5 years for me in July. I hope the rtx has helped, are you on any other meds ? Nice bike also...hope you have a safe and good summer with it.

[Jaha]

Happy Anniversary! I think it is a great thing to celebrate and to acknowledge how far you have come. I glad you got you a bike to enjoy life with. Take care of yourself and get out as much as you can!

[Middlesista]

Hi Greg- Glad to read that you are enjoying your motorcycle! Sounds like you and your medical team are staying on top of things with your Rituxin treatments. Do hope your hips, knees and sinuses issues improve.

[mishb]

Happy fighter anniversary Greg.

Enjoy the new bike and the feeling of wind on your face.

Here's to 17 more and beyond

[MikeG-2012]

Last weekend was my 17 year Anniversary of my Wegeners Granulomatosis. This time I decided to just have a small get together compared to recent years. On July 21st, I decided to bring in bagels to the office for my co-workers and I answered questions few of them asked. Then on July 23rd, I spent the day with my two of my closest friends to whom I care greatly about.

Congratulations! That is a long time and nice to know that life can go on for a lot of years with this stupid disease. The get together, that's a cool idea, I think I'll try that next year! (link to what I did this year) (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/5283-vasculitis-foundation-vf-red-award.html)


The past year had its ups and downs of course. Again like the 2014 and 2015, I had to go to the Mayo Clinic Infusion Center for Rituxan treatments, because my labs came back showing GPA activity and I was having problems. My best friend and his fiance came with me then drove me home after the treatment was done for the day. I greatly appreciated them helping and took them out for sushi after the treatments were done. Unfortunately, I am still having a lot of problems and I have to return in a few days, plus see a new PCP locally. A lot of my problems I am having are with my hips, knees, and sinuses.

My thing lately is with my shoulders, elbows and knees. I was finally desperate enough that I called my Rheumy and he said there wasn't much more he could do since I was already on an anti-inflammatory med, except a low dose of <sigh> PREDNISONE. The other option was a kenalog steroid shot (a little longer lasting than what you get with the RTX). I had the shot, and a few days later, I started 10 MG pred. Now, three days later, I am able to sleep on my shoulders again, and feel pretty decent.


However, I recently got my Motorcycle License with 3 Wheel Restriction and purchased a CAN-AM Spyder RTS which I am enjoying whenever possible.

Once the walking boot is off my right foot, I plan on getting the bike out of the garage. One of these days, I think a three wheeled cycle might be an option. Ride safe!!


I am hoping next year is better than the last.

Yes, I hope it is for you and for all of us!

[Gragnoc]

Happy Anniversary !!! It has been 5 years for me in July. I hope the rtx has helped, are you on any other meds ? Nice bike also...hope you have a safe and good summer with it.

Thank you and Happy Anniversary to you too, Debbie C. :hug3: Been taking Prednisone and Bactirm for over three years. Currently at 10 mg of Prednisone, but wish it was less.

[Gragnoc]

Thank you Mike-2012 and that was an awesome thing to do for your Nurse Practitioner. Back in 2008, I decided to have a get together with friends every anniversary, because in previous years the day was depressing for me. Having the first get together helped keep the depression away and also educated friends and co-workers about Wegeners Granulomatosis.

I am glad you are feeling better after getting the kenalog steriod shot. Hopefully you will get to ride your really nice motocycle soon. Riding a Cam-Am Spyder is a lot of fun and it is very easy on the knees.

I hope next year is even better for you and everyone.

[Gragnoc]

Thank you all to who replied and/or like this thread. All the support of the Wegeners Granulomatosis/GPA forum means a lot to me. Granted, there are supportive people in my life, but it helps to talk to people that are living with WG/GPA.

I hope next year is even better for all the members of the forum.