Re: New Member from Indiana
Welcome to the club Christine! It's OK to be scared, the questions will keep coming...keep asking, and the fight in you will create expectations that may not be answered immediately. In that light, your path seems to be a good one now. I did MTX w/pred for about 5 years, then off everything for another 4, then a flare which shifted docs to RTX infusions. Mine were 3 over a period of about 6 months, I feel so much better now. Took the 3rd infusion to get over the hump. Each infusion is mainly a nice nap in the hospital...first 1 was about 7 hours, next 2 were about 5. Got snacks, drinks, and a nice comfy chair w/TV...LOL...and I thought this was serious...smiles. Soooo, keep at it, listen to good docs, follow protocols, and keep up that attitude! Best to you.
Re: New Member from Indiana
Thanks, Don! The infusion sounds like a dream as I could use a good nap! Prednisone has me so wired that I am lucky to sleep more than 4-5 hours :laugh:
I appreciate the positive thoughts!
Re: New Member from Indiana
Hi Christine!
Sorry you had to go through all that but I’m glad you have a diagnosis and found this forum. I’m newly diagnosed as well and have found it to be a comfort. My symptoms started in January 2020 with strawberry gingivitis (crazy scary looking gums that almost completely covered my teeth) and then it moved to the nose. I was diagnosed in May, and like you, was put on methotrexate and 60 mg prednisone. I felt better after a couple of weeks and was able to taper down to 12.5 mg of prednisone. Then one of my ears got plugged and my throat started hurting and feeling constricted. My rheumatologist checked my bloodwork and there were no inflammation markers, not even c-anca. The doctors thought I had an ear infection caused by acid reflux from the prednisone. My rheumatologist put me on Prilosec and had me skip the methotrexate while I was on two rounds of antibiotics. Well, the antibiotics and ear tube that followed didn’t help. My nose started getting stuffy again and I developed a couple of angry spots on my gums. So now we realize it was a flare all along (or it was never tamped down fully in the first place), my bloodwork just didn’t show it. My rheumatologist thinks we need to bump things up and switch to Rituxan. I’m supposed to do two induction infusions 2 weeks apart, then every 6 months. I’m supposed to have the infusion in two weeks. She had me get my flu shot yesterday so there is time to build antibodies before the infusion. I’m nervous about trying a stronger medication and am so sick of side effects that it seems daunting to start over in that regard. Sorry I don’t have any infusion wisdom to share but I’m in your same boat. We’ll get through this together!
Jen
Re: New Member from Indiana
Hi, don't be nervous over the infusion...seriously, other than the time involved, it's a nice afternoon in a chair...just boring. Docs give you a little 'highball' of pred and some other things (peeps on here would know!) to start the infusion, and, voila, you will feel better in just a while...it's the highball!!! LOL But, after a couple of weeks & the next infusion, you will feel much better, the 3rd insures getting over the hump for now. Best to you.
Re: New Member from Indiana
The “highball” Dirty Don refers to is typically solumedrol (steroid), benadryl (antihistamine for possible allergic reaction), and tylenol. I’ve had 15+ infusions. The evening of the infusion, I don’t sleep well. The next day, I’m a little tired (not enough to prevent me from doing anything), and by the next evening (24 hours after infusion), I’m back to normal. Hope this info helps...
Re: New Member from Indiana
Jen,
Thanks for sharing. I have had the opposite effect with my gums receding. I find it interesting how this affects each person differently. I agree with the side effects. I am still on 40 mg prednisone and my face and eyes are soo puffy, so I am not sure what added fun this infusion will add to that, but my Rheumatoid doc believe this will do the trick to calm down the Wegeners so she can start tapering me more!
Here's to this infusion being a good answer for both of us!!
Take care,
Christine
Re: New Member from Indiana
Thanks, Pete! Curious if you also take Methotrexate or if the infusion of Rtx keeps yours at bay?
Re: New Member from Indiana
Quote:
Originally Posted by
cbaker0812
Thanks, Pete! Curious if you also take Methotrexate or if the infusion of Rtx keeps yours at bay?
@cbaker0812
I was on methotrexate for about two years from 2012-14. I was taking 20-25 mg/week. After about 18 months, I thought the side effect of fatigue had become excessive. By then, I had been on rituximab since late 2013. I was medically stable, so I asked my doc if I could see how things went on rtx and 20 mg of pred and stop mtx. I did fine. In 2016, I started an annual dose of 1000 mg of rtx. I did (and continue to be) fine. In late 2017, I began a very slow taper off pred, getting off it at mid-year 2018. I’ve continued to do well. So, for GPA, I only take the annual dose of rtx and bactrim DS 3x weekly.
On a daily basis, I walk 2.5-3.5 miles 5x weekly, and I’ve been a bit more aware of what I eat. COVID has made the eating plan more difficult since I can’t personally pick out produce, meat, and fish I want. (We do curbside pickup for most of our groceries.) I’m eating a bit more processed food, but that will change post COVID.
Re: New Member from Indiana
That give me a lot of HOPE!! So glad you are doing well. I too walk multiple times a week and also do some other workouts it keeps my sanity since my cycling season is over and I missed a good portion of it this summer trying to figure out what was wrong. Hoping the COVID moves on soon as it is just another twist that we could all live without!