Hi I'm Arlene and I'm new here!

Hello all! I'm Arlene and I just joined up so I wanted to say hi and thank you for letting me part of this community!

My story starts in April 2021. It seems the 2nd Moderna vaccine triggered not only the itchy, painful 7-day arm rash that the 1st dose provided but a few other problems including frozen shoulder and a 3.8cm mass in my left lung. I've never smoked but have allergies so the only way my pulmonologist found the mass was by chance. I had a CT of my lung in June 2020 because of a cough and all was clear but my follow-up July 2021 CT showed the mass. I should note that my main issues were pain, insomnia, sinus problems/nosebleeds, extreme fatigue and unexplained weight loss (about 8% of my body weight).

My neurologist who I was sent to in July for the frozen shoulder problem put me on gabapentin and after no less than 45 tubes of blood for a host of labwork, more CTs/MRIs, and a horrible test called an EMG test she suspected I had GPA and referred me to a rheumatologist (2 month wait). I finally got an appointment with him in September and he went over all my symptoms and redid some labs. I developed secondary Sjogren's syndrome and secondary inflammatory arthritis (I already had Raynaud's, thyroid issues, etc.) so those were new developments. And though I never tested positive for ANCA he said "tissue is the issue", meaning I had to get a lung biopsy of the mass for the most accurate diagnosis to see if I in fact had what he too suspected was GPA.

In October I had the mass removed (OUCH!) and it was confirmed I had limited/non-life-threatening GPA. So my first plan he had me on was the methotrexate 10mg + prednisone 5mg. That 2 month trial didn't work out well for me as I still had all the pain/symptoms plus the new horrible ones that the prednisone gave me! He increased my methotrexate to 15 mg and changed prednisone to methylprednisolone 4mg. He also increased my lorazepam to 1-2mg each night because my sleep was awful and increased my gabapentin 300mg to 6 times per day. Again that did not work out.

So finally here I am on 5/31/22 and in a few hours I am having my 2nd Rituxan infusion! Long story short, I'm still not in remission after 8+ months and am hoping the Rituxan finally does it! I was told by the nurses 2 weeks ago at my 1st infusion that it takes up to 12 weeks to start having any positive effects from it so while I'm doing my best to be positive that is a long time! I've been miserable for over one year now and all I can say is how grateful I am to have found this forum/group! It's hard sometimes keeping a positive, strong appearance (mostly for my family's sake) so it is nice that there is a place here where others understand all the stuff we go through!
Anyway thanks for listening and, again, thanks for having me! :hug3:

Hi Arlene!

Welcome to the forum. I’m sad that you’ve had such a time getting diagnosed, but GPA is often difficult to diagnose because so few doctors think to look for it. I hope the rituximab gets you to remission quickly.

Where are you located? Once we know that, we can offer suggestions about knowledgeable GPA doctors who can treat you more effectively.

Keep us informed about your progress!

Thanks Pete! :smile:

I'm located in the greater Seattle area (Washington) and, as a matter of fact, my pulmonologist is having me go to another rheumatologist to see if she is a better fit to help me!

I'll try to post updates if anything changes. Thanks again for the warm welcome and kind thoughts!

Hi Arlene,

Welcome. I'm pretty new here too, but I've had Wegener's for several years and I've been through a lot of ups and downs. I'm sorry you have been through so much, but I believe you will find the Rituxan makes a world of difference. In fact, I think you will start to feel better sooner than 12 weeks, at least that has been my experience. But I think we all know it can be a tough adjustment early on, so take heart. I was really frightened (and a little angry, I think) at first, and it seems to me from reading other posts on this forum that this is fairly common. So if you're feeling some anxiety about this new experience, I think that will improve as well, along with improvement in your physical symptoms.

I have been taking Rituxan every six months recently and doing very well on it. Now that I've been on this maintenance regimen, I only have to take one infusion every six months, which is easier than having two or four infusions at a time. Every case is different, so your doctor may recommend a different protocol. I wish you the very best and feel confident you will soon start to see that you can feel good again and have a good life.

Very best regards,
Ruby

Thanks, Ruby!

My infusion really knocked me out yesterday so I didn't do much but rest or I'd have thanked you earlier for your kind post! I'm hoping these infusions finally put me in remission. Actually, if they don't, I have no idea what happens! Well one day at a time! ;)

Have a great day! :)

Hi Arlene.
Welcome here.
One day at a time is always a good idea ;)

I hope you 'll soon feel better!

Thanks so much, I appreciate it!!! My face turned bright red yesterday and I feel like I'm on fire but today is slightly better--I'll take even 1% better! LOL

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Originally Posted by dolfinette

Hello all! I'm Arlene and I just joined up so I wanted to say hi and thank you for letting me part of this community!

My story starts in April 2021. It seems the 2nd Moderna vaccine triggered not only the itchy, painful 7-day arm rash that the 1st dose provided but a few other problems including frozen shoulder and a 3.8cm mass in my left lung. I've never smoked but have allergies so the only way my pulmonologist found the mass was by chance. I had a CT of my lung in June 2020 because of a cough and all was clear but my follow-up July 2021 CT showed the mass. I should note that my main issues were pain, insomnia, sinus problems/nosebleeds, extreme fatigue and unexplained weight loss (about 8% of my body weight).

My neurologist who I was sent to in July for the frozen shoulder problem put me on gabapentin and after no less than 45 tubes of blood for a host of labwork, more CTs/MRIs, and a horrible test called an EMG test she suspected I had GPA and referred me to a rheumatologist (2 month wait). I finally got an appointment with him in September and he went over all my symptoms and redid some labs. I developed secondary Sjogren's syndrome and secondary inflammatory arthritis (I already had Raynaud's, thyroid issues, etc.) so those were new developments. And though I never tested positive for ANCA he said "tissue is the issue", meaning I had to get a lung biopsy of the mass for the most accurate diagnosis to see if I in fact had what he too suspected was GPA.

In October I had the mass removed (OUCH!) and it was confirmed I had limited/non-life-threatening GPA. So my first plan he had me on was the methotrexate 10mg + prednisone 5mg. That 2 month trial didn't work out well for me as I still had all the pain/symptoms plus the new horrible ones that the prednisone gave me! He increased my methotrexate to 15 mg and changed prednisone to methylprednisolone 4mg. He also increased my lorazepam to 1-2mg each night because my sleep was awful and increased my gabapentin 300mg to 6 times per day. Again that did not work out.

So finally here I am on 5/31/22 and in a few hours I am having my 2nd Rituxan infusion! Long story short, I'm still not in remission after 8+ months and am hoping the Rituxan finally does it! I was told by the nurses 2 weeks ago at my 1st infusion that it takes up to 12 weeks to start having any positive effects from it so while I'm doing my best to be positive that is a long time! I've been miserable for over one year now and all I can say is how grateful I am to have found this forum/group! It's hard sometimes keeping a positive, strong appearance (mostly for my family's sake) so it is nice that there is a place here where others understand all the stuff we go through!
Anyway thanks for listening and, again, thanks for having me! :hug3:

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I know many of us with autoimmune disorders had flares of our autoimmune disorders after getting the vaccinations for Covid virus but in your case it seems like it might have been the cause of a new one which is probably pretty unusual. Having a flare though of other auto immune issues or developing a new one is not too unusual though since many of us have more than one autoimmune disorder. RTX usually helps with most auto immune disorders although it can some times take a while. High dosage of pred meds are often needed till then even though we al hate the side effects from lots of prednisone meds.

Yes it is odd but all signs point to the vaccine triggering GPA in me. I had no lung mass prior nor did I have any of the symptoms. I had many autoimmune disorders prior to it. Well, that's how life rolls sometimes! So far the infusions have given me headaches, nausea, flushing, and feeling like I'm on fire...fun stuff. ;) I know it takes time so what's another few months of pain--it has already been over one year with minimal relief! Thanks for your post drz!

Hi Arlene and Ruby,
This is just the craziest disease. It seems we all have different symptoms and react to medication differently. My doctors think I walked around with GPA for years, too many close calls with pneumonia. I wasn’t diagnosed until I was 67, by an ENT. First rheumatologist didn’t have a clue. Thanks to this site I knew to ask how many patients he treated with this- none! For me Rituxin 2x a year has been my friend. I also take Bactrim and the evil prednisone. I am reducing prednisone because it has caused me to have T2 diabetes, causing me to create a very low carb lifestyle. In addition to sinus problems I have had many dental issues, spent yesterday in the dentist’s chair.
I am 72, my wonderful supportive husband is 79. We live in our own home in a 55+ community. We have 2 dogs, one 8, the other a crazy puppy. The 8 year old’s brother died this past January. I was forlorn. He was a great little friend when I was initially so sick. Best dog ever.
Since my problems originate in my sinuses, and Rituxin knocks out your B cells which you need to fight Covid, the last few years have caused extreme isolation. My doctors gave me my odds if I got Covid and we saw a few neighbors, 60’s and 70’s pass from it. The vaccines gave me no antibodies, but fortunately I was able to get Evusheld.
This journey we are all on, requires us to avoid stress and stay as positive as possible.

Hi Masha!

I was just telling my husband how crazy this disease is too! I know we all have a host of symptoms and it just seems so random! I never lie down during the day but that is exactly what I was doing for the past couple of hours because I've been feeling so crummy since my 2nd infusion 3 days ago. I, too, have dental issues...I have TMJ and those fun random bumps that show up around my mouth...oh and, of course, the extremely fragile teeth that most recently put me in my dentist's chair in March after an endoscopy that cracked one tooth and one crown!

I'm usually decent at joking about my situation. I mean, it's not often someone has such a "fun" assortment of issues like GPA, Sjogren's, Hashimoto's, Raynauds, TMJ, IBS, arthritis, and of course the insomnia LOL. Plus I've gone through some pretty painful things in my life including a tear duct intubation (like 17 shots into my eyeball during one process), frozen shoulder and a sacral laminectomy...basically when I slipped in the shower 6 years ago I got an undetected CSF leak that made me feel like a level 10 migraine whenever I was upright! That leak enlarged 3 Tarlov cysts that started "choking" my spinal cord nerves and paralyzing my left side. Thankfully the surgery by an extremely rare and gifted surgeon in Dallas fixed me up and I was good as new. I've given birth and had a hysterectomy and, of course, went through that horrid lung biopsy but I've never felt so bad as I have with all the things GPA has "given" me! I give you and everyone here a lot of credit for keeping your spirits up!!! Between all the meds and blood tests and symptoms I experience daily it is hard to be upbeat! Plus I'm on so many meds I could open up a pharmacy! LOL

I have watched myself this past year go from a vibrant, strong, happy person to a sickly looking waif! I'm 5'3", down to about 92 pounds, my once long hair is like straw and my skin is sallow. I'm ok with the pain and even the obvious effects this disease is having on my body. What I am having a hard time with is the effect it is having on my husband, parents, and daughter. I'm extremely lucky to have them all in my life but I know how hard it is for them to see my like this and that bothers me a lot. I try to be reassuring but sometimes it is nearly impossible! I'm working on that though. :) It's unfortunate that my body hates steroids because they gave me a tiny bit of pain relief--however one of my side effects with them is depression and I cried every morning for the 2 months I was on them. My body is so odd I swear! I can take Ambien 12.5mg and sleep 4 hours tops yet show me one prednisone and I fall apart! ;p

Gah sorry for yammering on so much! It is just so nice talking to you and others who understand what I'm going through! :smile1:

Have a wonderful weekend!
Arlene

Hi everyone! I hope you are all doing well. :biggrin1: I thought I'd update my current status since I haven't posted in a while!

So on 5/17/22 & 5/31/22 I had my Rituxan infusions and scheduled my next set in November. I didn't have immediate reactions so that was good!

Oh, so back on 4/29, I saw my pulmonologist after doing some breathing tests and he suggested I get a 2nd opinion from another rheumatologist who was a colleague of his. He set it up and I went to see her on 6/23. OMG...HUGE mistake! That was the worst experience I've EVER had with a doctor. After TWO HOURS of being grilled, body-shamed, & demeaned I left her office crying for an hour. I had a list of questions and notes but she wouldn't look at them until we spent over 1 hour interrogating me about every detail of my life starting from birth about all my health issues. There was no way I could remember in chronological order things such as the first time I went to an allergy doctor (my Mom might know!), the first time I had blood pressure issues, and the blood type of my miscarried baby in college!!!!!! Gee thanks for bringing up that painful memory and why the heck would I know the blood type? She had no tact, empathy, or patience and some of her questions were a bit shocking like the first time I went on the pill and had sex. I made the mistake of telling her I was briefly anorexic in high school (we're talking back in 1987!) and that was held over me like a child being scolded. I was very clear when I said I was concerned about my current GPA-related weight loss and WANT to gain it back. I mean, I look like a skeleton with skin which is NOT my or anyone's idea of attractive! I said I eat even when I'm not hungry and feeling nauseous or "bleh". Yet she said because I didn't want to add ANOTHER pill (Zofran) to my daily regimen that I WANT to lose weight. I said that is not true and taking Zofran for long periods of time affects my IBS which is already very messed up—I have nothing against Zofran at all and took it throughout my pregnancy! I also said I make sure to include at least one protein bar each day. She then accused me of wanting to lose weight AGAIN. Because I eat protein bars?! According to her, anyone who eats them replaces the bar with a meal and therefore wants to lose weight...like me or all those bodybuilders?!?! Right. As if that wasn't enough, I said I've always eaten several meals throughout the day because it is easier for my stomach to digest according to my doctor who helps me with IBS. Guess what? Yep, AGAIN she accused me of wanting to lose weight because I want to trick my body into thinking that I'm not in starvation mode by giving it food constantly. I made it very clear I am NOT anorexic now and I've been healthy for the past 30+ years until I got Wegeners/GPA but that didn't seem to matter. She said basically something like because I was anorexic back then the cells in my body now all have the tendency to be anorexic-prone! What?! She finally glanced at my questions I had printed out and literally spent 2 minutes shooting off a bunch of "yes" or "no" answers with an occasional mumble. When I tried to salvage something from this horrendous visit by asking about pain management she said "I don't care about your pain, you need a pain specialist for that". I was so angry after my crying session it took my family spent 45 minutes to console me!

Anyway I finally saw my good rheumatologist again on 7/5/22 for an update. I told him my pain level/symptoms are the same as before the infusions (nose, neck/upper body, dry eyes/mouth/throat) except some have gotten worse: vision, hearing, balance, voice (hoarse more often), memory, tooth/jaw pain, IBS issues, itchy skin/scalp, Raynauds (very cold in morning until ~11am/very warm ~1pm almost daily) & weight (<90 lbs. now). My left temple has had a tight/numb feeling that hurts to touch since 6/24. Then ~7/1 I noticed a stabbing then achy/burning feeling on left side of head above my ear. Finally and in my opinion worse than anything, about 2 weeks after my 2nd infusion I lost most of my taste and smell! :\ I can only taste herbs like cinnamon and wintergreen at ~50%--I can't taste some things at all. He's not sure if I'll ever get my taste back which, for me, is almost worse than the other symptoms! There really aren't that many healthy or hearty things to eat that are cinnamon! LOL

After listening, my doctor said it sounds like the Rituxan isn't helping, it's only causing me more harm. �� He also can't try another option until it is out of my system, which will be in another 5 months or so. All he can do now is try to help me with the pain. I am very sensitive to pain pills so when he prescribed one for me to try it went horribly as the others have in the past. Full migraine with nausea for about 12 hours starting at 3am after I took the pill the night before. Finally after 2 days the migraine was gone and I just had a slight headache.

So here I am, still in pain with the same symptoms I've had since last year plus quite a few new ones, now trying to keep my weight from going under 90 lbs. while eating food I can't taste. The only good thing is I did get another Evusheld shot on 7/6 and am planning on getting my next one in 3 months.

Sorry for such a long story!!! I think I just wanted to share it because many of you can relate to some of these things and though my family really tries to help it is hard because they don't quite understand the toll GPA takes on both body and mind. So thanks for letting me share again, it actually makes me feel better to vent a little LOL. :)

Stay safe and try to smile daily! :biggrin1:
Arlene

Hi Arlene,

I’m sorry that you’ve had such a bad time over the past months.

While it seems your preferred doc is compassionate, what about experience treating GPA? When I was diagnosed, the doc who was leading my care was, in retrospect, just a chapter in the textbook ahead of me, his patient. When I had a bad reaction to azathioprine, he seemed a bit flummoxed. It was then that I asked him how many GPA patients he was treating. He said two or three dozen. It was then I self-referred to Cleveland Clinic (about two hours away).

My advice to you is to find a vasculitis/immunology specialist who can effectively sort through your issues. The Vasculitis Foundation website can help you find a doc who’s reasonably close to you.

Thanks so much, Pete!

I actually have looked at the VF website and there is no one in my state registered! But I have a wonderful team of doctors who I trust completely to give me the best care. My neurologist was the first to suspect GPA and she sent me to my rheumatologist who also suspected it based on my symptoms but said "tissue is the issue" and waited until the surgeon who removed my lung mass confirmed it. My pulmonologist only wanted me to get a 2nd opinion based on her thorough notetaking (though he didn't realize how she went about getting it!)...even she said I was in the best care with my current rheum. My GI is going to help me try to gain weight, my urologist is amazing and checks on my urinary health regularly, and my PCP provides all else.

I'm just one of those rare people whose medical issues don't seem to follow the norm. I can take 10mg Ambien or even 12.5mg Ambien ER and sleep only 4 hours whereas some men sleep 10 hours on only 5mg. My body reacts poorly to other meds that are "easy" for most people to take. My bloodwork never even showed positive for ANCA, just PR3. So while I'm bummed that the Rituximab didn't work, I'm not surprised at all. I actually told my husband a few weeks ago that I felt like I'm slowly getting worse, not better. But I am confident that my doctor(s) will do everything they can to get me in remission and, in the meantime, get me the Evusheld every 3 months.

I guess the good that has come of all this is that I've made the choice to start "living" more instead of just "existing". I don't want to be afraid to visit my family or go on a mini "girls trip" with my mom and daughter in October (which I've had planned for nearly 10 months). Sure it would be more convenient if I was in remission but I may never get there and I don't want to miss out on any more because of my GPA. Life's too short so the best I can do is to take all precautions (mask/face shield/gloves/etc.), set aside all the things that chip away at me daily (the pain, inability to taste, etc.), and remember how to smile and have fun again, at least for a little while! :biggrin1: In the meantime, I'm just taking one day at a time.

I appreciate this forum so much. I know there will be plenty more days when I'm ready to cry because it can be overwhelming to deal with so much but being able to "vent" to others who understand is so helpful. So thank you Pete for your advice and for everyone who is involved in this website! :hug1:

So, I don't know if this will help, but I've been thinking about this for awhile, and I'll give it a shot. It's about the weight loss. I have had occasional problems with weight loss during WG flares as well. Unintentional weight loss can be a puzzle I think to some people because I think people in general have more experience with unintentional weight gain. I think the common response is "just eat." But for people who are more prone to lose weight, gaining it back can be a challenge. What I have found helps is light to moderate exercise to stimulate the appetite. I stress light to moderate, because I find that at a certain point of intensity, exercise actually suppresses my appetite. Anyway, this is what has worked for me when I have lost weight from time to time since my diagnosis, although it may not work for everyone.

Another suggestion is go to the grocery store when you're hungry, not right after you've eaten. If I try to shop when I'm not hungry, I don't buy much of anything because nothing looks appetizing. Then the next time I am hungry, there isn't anything in the pantry.

Good luck. I hope you start to feel better soon. I believe you will.

Ruby

Thanks so much for your advice, Ruby! It helps knowing that others are out who have gone through this issue! I actually do light exercise every morning for about 45 minutes for as long as I can remember because it helps me with my stiffness and keeps my muscle tone as best as I can considering. The issue for me now is that nothing tastes good for the past month or so. :\ I've purchased pretty much every cinnamon thing out there because that is the only mild taste I have left aside from wintergreen (it's like a treat eating a wintergreen lifesaver LOL). I do still get hungry but not as often since GPA--I make sure I eat as much as I can daily even when I don't crave anything. But I will try to do a bit more exercise just to get a little edge! As for the grocery store, we have a lot of people in my area who don't wear masks and don't understand personal space in stores so I order everything online to be safe. It is fun looking at what is in the store though, you're right! :biggrin1:

Again thanks so much to you and everyone, it means a lot to me! Sorry if I'm a bit scattered today but I'm having horrible chills/hot flashes and my skin is tight, itchy and almost burning and I have some hives. I'm just a mess overall LOL! Have a great day and stay safe!!!

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Originally Posted by dolfinette

as a matter of fact, my pulmonologist is having me go to another rheumatologist to see if she is a better fit to help me!

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Changing to a rheumatologist SHOULD be a good thing! Glad the pulmy referred you. I do not think you will be sorry!

Quote:

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Originally Posted by MikeG-2012

Changing to a rheumatologist SHOULD be a good thing! Glad the pulmy referred you. I do not think you will be sorry!

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Hi MikeG!

Yes it "should" be a good thing if the rheumatologist you go to for a 2nd opinion isn't atrocious (you can find details of how THAT visit went in my 7-13-22 post in this thread:crying:)!!!

It did make me appreciate my rheumy A LOT more LOL. Plus it is the general consensus of my rheumy, pulmonologist, and GP that the rituxan hasn't been helping me, it's just making me have more symptoms and worsening some of my original ones. Murphy's Law. LOL So I can't do much until it is out of my system at the end of the year. Then hopefully something else can work. :smile1: