Re: New old guy on the block
Nine years in now. I was released from OSU Medical Center nine years ago today. The past year saw my second minor (and third overall) flare. The disease remains well-controlled with an annual dose of rtx. Other than a four-week pred blast to treat last summer’s flare, I’ve been pred free since June 2018.
Here’s to significant advances in treatment of the disease in the coming year.
Re: New old guy on the block
Thanks for the annual update, Pete. You were dx'd and began treatment a couple of months before I was in 2011. I looked back over the thread from the beginning, and found good posts from people who have either passed away or haven't posted much in years. Some humorous ones, too. Might be a good way for new members to get some background and get acquainted with some of those old members. Sorry for last summer's flare, but glad you are pred free and generally keeping things under control. Amen to new advances in treatment! Next year will be our 10 year anniversary! Cheers!
Sent from my MotoE2(4G-LTE) using Tapatalk
Re: New old guy on the block
Happy survivor'versary Pete.
Such a lot of time has passed, and you have and your medical team, have done well :thumbup:
Who would have thought it, when we all read those google reports, way back then
Re: New old guy on the block
Well, here I am at 10 years post dx. Thankfully, there’s very little to report on the GPA front. Still off pred. Taking bactrim 3x weekly. Getting ready for either a 500 mg rtx in March or my COVID shots within a few weeks (B-cell level permitting).
For those who are newer to the forum, this thread provides most of my early case history. From there, I’ve recovered to lead the normal life of a 74 year-old.
Re: New old guy on the block
Good to hear all is well, Pete! We are coming up on my 10 year anniversary in a couple of months!
Re: New old guy on the block
Scheduled to get 1000 Rituxin feb 1. I need it, so I will wait another 3 months for vaccine. If I wanted vaccine now, couldn’t get appointment until Feb, then another 19 days for 2 nd one. Then wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.
Re: New old guy on the block
Quote:
Originally Posted by
Masha
Scheduled to get 1000 Rituxin feb 1. I need it, so I will wait another 3 months for vaccine. If I wanted vaccine now, couldn’t get appointment until Feb, then another 19 days for 2 nd one. Then wait 2 to 3 weeks after for vaccine. So I think Rituxin, wait 3 mo. get vaccine is my best option.
I got to 7.5 prednisone and could feel my throat and chest problems, went back to 8, took daily Bactrim, then it turned into head cold. Will stay at 8 for a few weeks, then try slow decrease again. For people who have been at 60 or 40 this sounds crazy, but getting down from 10 after 3 years is a challenge.
My experience is that tapering the pred meds when you get under 10 mg is a real challenge. It does not seem like a 1/2 mg or 1 should be that big of a change after I dropped by 5 or 10 when I went from 50 to 40 or 40 to 30 but my body often seems to say whoa and complain many times and says slow down or go back up. I am currently at 6 1/3 and hoping to get back to 5 or 6 again some time this year.
Re: New old guy on the block
Thank you for your story. I’m coming close to one year with GPA. It gives me strength to keep going on. Getting over my first flare-up. Got my first coronavirus shot last week. Glad it’s turning spring in the Lake Tahoe area. Start of yard work. Lots of things to do. Need something to do doing this coronavirus stuff. Be safe all.
Re: New old guy on the block
I was diagnosed 11 years ago today. I still feel pretty good. Dealing with Covid has been interesting. I got two doses of Pfizer last February followed a month later with a semiannual dose of 500 mg of rituximab. I got the second rituximab in September. I had a Covid antibody test in early December that detected no antibodies. So, I got the booster shortly thereafter. It looks like the trick is going to be striking a balance between maintaining my GPA remission and also having Covid immunity. I’ll be discussing my options when I see Dr VillaForte in March.
The disease itself continues to degrade my kidneys. Creatinine is edging up. GFR is going down. Nephrology isn’t overly concerned except that I have excessive post-void urine retention (about 500 ml). The worry is that I’ll become more susceptible to UTIs and further degrade my kidneys. I see urology next week and will more thoroughly discuss how to fix this. I also have BPH and am treating that with tamsulosin and finasteride (with slight success).
Re: New old guy on the block
Have you considered getting a Uro-lift to help with retention?