New Member from Indiana

[cbaker0812]

Well here goes.... My troubles all started in November of 2019 when I flew to Aruba and back for vacation. Upon return, I could not get my ears to clear, thought maybe a sinus infection but after 2 rounds of antibiotics, still had a plugged feeling in my ears... By February 2020 I was having so much drainage and pain in my ears they put in tubes to relieve the pressure. Forward to spring, still unexplained ear drainage and sinus stuffiness. I am a cyclist so we started our outdoor riding. Repeated Sinus infections ensued with only about a week relief in between antibiotics. I noticed fatigue while riding, but wrote that off as getting back in shape and then blaming it on the fact I was breathing through my mouth because I was always plugged up. Finally got the ENT to do a CT scan of my sinuses after months of nothing working. I started noticing a wheezing feeling in my chest on occasion, however, I once again blamed that on Asthma I had as a child. The CT scan showed a severe Sinus infection, however, by that time, I was having severe rheumatoid pain in my hands, knees and feet that I couldn't explain. I got up one morning and just knew something else was wrong. My doctor being on vacation was a blessing. As they sent me to the ER. 7 days in the hospital, lots of tests, biopsy and a Wegener's diagnosis on August 12th, 2020. I was sent home on methotrexate and 60 MG of Prednisone. I am currently still on 25 mg of Methotrexate and 40 MG of Prednisone as my eyes were swelling too much and I had rashes on my legs on 60 mg. First follow-up CT scan showed a solid improvement in the lesions in my lungs, however my doctor feels that they should have been gone not just improved with the high dose of medications I was on. She has recommended that I do a 4 week infusion of Rituxan which is being scheduled. This is all so new to me and I have never been sick in my life, so although I think the list of side effects are scary, I also feel like it is my only option to get this suppressed. My infusions are to be once a week for 4-5 hours each time for 4 weeks.

Has anyone else done that type of Infusion that can share how it made them feel? I am staying on the methotrexate while doing this as well as the prednisone and can't image more swelling and side effects. I am eating very clean and back to exercising several days a week. I was feeling pretty good until the last couple of weeks and now I am tired again and my sinus and ears are changing and my toes and fingers are numb again, so I feel like my current treatment is probably not doing the trick as the doctors stated.

I will admit I am still in the little scared, a lot of unanswered questions stage, but I am a fighter and I will get this in remission as I have a new granddaughter and a lot of life left to live!

Thanks for listening - Christine

[Dirty Don]

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.

[cbaker0812]

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!

[JenPNW]

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

[Dirty Don]

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.

[Pete]

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...

[cbaker0812]

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

[cbaker0812]

Thanks, Pete! Curious if you also take Methotrexate or if the infusion of Rtx keeps yours at bay?

[Pete]

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.

[cbaker0812]

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!

[Peter Marsham]

Hi, Peter from Australia here. I was diagnosed October last year, primary treatment was two infusions of Rituximab, then high-dose mycophenolate and panafcort (50mg daily initially, now tapered down to 5mg daily). The infusion procedure is pretty easy, but takes about eight or nine hours per session with saline flushes, etc. I had two infusions a fortnight apart. the infusion itself had no untoward effect on me, the main worry was being careful of the cannula whenever I moved. I drove myself in to the infusion centre, drove myself home again, was a bit sleepy after that, but that was probably because I’d been sitting in a chair for eight or nine hours. There’s nothing to worry about with monoclonal antibodies, I actually hate the Panafcort I’m on more.

it sounds like you had a pretty quick diagnosis, lucky to get a doctor who knows what to look for. That’s the main step in pushing this thing into remission, and keeping it back.

[CaraJ]

Hi Christine,

I know this is an old post, but i am also from Indiana and newly diagnosed. I was wondering how you are doing 3 years later.


Well here goes.... My troubles all started in November of 2019 when I flew to Aruba and back for vacation. Upon return, I could not get my ears to clear, thought maybe a sinus infection but after 2 rounds of antibiotics, still had a plugged feeling in my ears... By February 2020 I was having so much drainage and pain in my ears they put in tubes to relieve the pressure. Forward to spring, still unexplained ear drainage and sinus stuffiness. I am a cyclist so we started our outdoor riding. Repeated Sinus infections ensued with only about a week relief in between antibiotics. I noticed fatigue while riding, but wrote that off as getting back in shape and then blaming it on the fact I was breathing through my mouth because I was always plugged up. Finally got the ENT to do a CT scan of my sinuses after months of nothing working. I started noticing a wheezing feeling in my chest on occasion, however, I once again blamed that on Asthma I had as a child. The CT scan showed a severe Sinus infection, however, by that time, I was having severe rheumatoid pain in my hands, knees and feet that I couldn't explain. I got up one morning and just knew something else was wrong. My doctor being on vacation was a blessing. As they sent me to the ER. 7 days in the hospital, lots of tests, biopsy and a Wegener's diagnosis on August 12th, 2020. I was sent home on methotrexate and 60 MG of Prednisone. I am currently still on 25 mg of Methotrexate and 40 MG of Prednisone as my eyes were swelling too much and I had rashes on my legs on 60 mg. First follow-up CT scan showed a solid improvement in the lesions in my lungs, however my doctor feels that they should have been gone not just improved with the high dose of medications I was on. She has recommended that I do a 4 week infusion of Rituxan which is being scheduled. This is all so new to me and I have never been sick in my life, so although I think the list of side effects are scary, I also feel like it is my only option to get this suppressed. My infusions are to be once a week for 4-5 hours each time for 4 weeks.

Has anyone else done that type of Infusion that can share how it made them feel? I am staying on the methotrexate while doing this as well as the prednisone and can't image more swelling and side effects. I am eating very clean and back to exercising several days a week. I was feeling pretty good until the last couple of weeks and now I am tired again and my sinus and ears are changing and my toes and fingers are numb again, so I feel like my current treatment is probably not doing the trick as the doctors stated.

I will admit I am still in the little scared, a lot of unanswered questions stage, but I am a fighter and I will get this in remission as I have a new granddaughter and a lot of life left to live!

Thanks for listening - Christine