Diagnosed yesterday

Hi everyone,

I’m Jen and I was diagnosed with GPA yesterday. I’m 41 and started experiencing symptoms in January of this year. My initial symptom was “strawberry gingivitis” that grew so fast that in a couple of weeks it almost covered my teeth completely. It was super painful and I couldn’t eat solid food or brush my teeth. I had to take a month long medical leave from work as I was having every test possible done and was at the doctor almost daily. I had a full body ct scan, 4 gum biopsies, and countless blood tests, including c-anca, sed rate etc. Everything was clear so my doctors (primary care, ent, rheumatologist, oncologist, periodontist, pathologist and dermatologist) were all scratching their heads. I had of course googled strawberry gingivitis and found many articles saying it is for sure GPA. I put myself on an anti-inflammatory diet and my gums were 80% back to normal after two weeks. The doctors thought maybe it was an extreme allergy/sensitivity and signed me up for testing. It is scheduled for later this month. I guess I won’t be needing that.

I had a good couple of weeks back at work but then the quarantine happened so I’ve been working from home ever since. Mid-March I thought allergy season was hitting me harder than normal with severe sinus congestion and cough. My “allergies” continued to worsen until I called the doctor for help since the Flonase and Zyrtec wasn’t helping at all. Over the course of a few weeks they had me try a bunch of different medications including singular, antibiotics and low dose prednisone but nothing touched it. I began having difficulty breathing because my nose was 100% blocked and the post nasal drip was making me cough uncontrollably. It was noisy when I was breathing. It felt like there was always something in my throat. With COVID-19 I had only been doing video visits, but my doctor decided I should be seen in person so I went to urgent care. They took an X-ray of my neck and thought they saw an abscess so they sent me to the ER in an ambulance. They did a ct scan there that was clear though. They decided to give me more antibiotics and send me back to the ent who helped with my gums. The ent doc put me on higher dose prednisone which helped. I asked if we could test one more time for GPA. She thought that was a good idea. The day after my blood tests, the rheumatologist I had been working with gave me the diagnosis (my c-anca was was way up from before, plus sed rate was up). That same day she got me in for more blood tests and ct scans to see how wide-spread it was. All my tests came back showing it is just in my nose at this point (not even sinuses - just nose). The rheumatologist said she would keep me on the high dose Prednisone and add methotrexate. This was in an email so I wrote back asking when I could get started with methotrexate. Waiting to hear back about that.

The last few months have been really difficult but I feel extremely lucky that my gums acted out the way they did. I think without them GPA wouldn’t have been on anyone’s radar and I’d probably not have a diagnosis for a long time like I’ve read others have experienced.

Sorry that was so long. It gives me great relief to know I’m not alone and I feel very fortunate to have found this forum.

Thats all for now but I’ll probably come up with a million questions! :scared:

Jen

@JenPNW

Welcome to the club nobody wants to join! I’m glad to hear you’re responding to treatment. I don’t know where you’re located, but I hope you have reasonably easy access to a doctor with expertise treating GPA.

This is the place to be if you have questions, want to share your experiences, or just vent. Keep us posted about how you’re progressing.

Welcome to the club...interesting initial symptoms. Sounds like after much trial and error, the docs have found you a good course to maintain for a while. Hope the MTX and reducing pred help you get to a good place. Stay on the regimen that works, don't veer on your own, ask any & all questions, and keep on keeping on...you'll get this!

Thank you for welcoming me to the club @Pete and @Dirty Don (I hope my tags work). I’m in Portland, OR. I was lurking on here before I had a diagnosis and saw a recommendation to ask your rheumatologist how many GPA patients they have, so I took that advice. She said too many to count! She told me it’s a rare disease to the general population but to her it’s quite common. So that’s good. She is with Kaiser Permanente but I might also reach out to the folks at the OHSU Vasculitis Clinic. I actually saw one of the OHSU doctors when they were trying to figure things out. Kaiser Permanente and OHSU work closely together in these parts.

Felt hit by a truck today - soooo tired. I think I felt so much better yesterday that I overdid it. I’m forcing myself to take it easy tonight!

Jen

Hi, Jen. I'm glad you found us. I'm in Olympia, WA, a ways up the freeway from you. I lived in Portland for 8 years as a kid, where my dad taught, did research, and was an administrator at OHSU. That was back in the 1960s when it was called University of Oregon Medical School.
It sounds like you are in good hands with Kaiser Permanente if they collaborate with OHSU. You are lucky to get a fairly early diagnosis. It would be nice if your WG/GPA involvement would stay as limited as it is. But you have probably already been told it may not, so you will need to be monitored regularly with labs from now on.
It is normal to feel wiped out after a day of overdoing it. We have all been there! I hope you will keep us updated on your progress. Best wishes!
Anne

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Hi @annekat,

Nice to meet another Pacific Northwesterner! I have some family in Olympia, beautiful place!

When I asked my doc how long I would be on Methotrexate she said 2 years to indefinitely depending on how things go. It’s a little daunting to think of the possibility of forever and the unpredictability is a little scary. I was diagnosed early but my symptoms came on strong and fast (and weird with the gums). I’m worried this means it will be a wild one to control.

I’ve been on prednisone for almost three weeks and the methotrexate for almost one week. I’ve only developed nasal crusting really in the past week. My congestion and nasal pain is much improved though. Do you think I should be concerned about a new symptom at this point?

Also, I was wondering if your body adjusts to the methotrexate side effects or can I expect to just be exhausted every Saturday (the day after) for 2 years - indefinitely?

I appreciate your thoughts!

Jen

Hi again Jen, I was on MTX and pred. The MTX was for about 5 years, then off everything, flared again a year and half ago, now on Rituxin...so no guarantees as to the future. Nausea & severe lethargy were side effects of MTX for me, so doc prescribed (also OTC) folic acid...and had me take MTX 1/2 a tab within 24 hours of each half rather than all at once. Between the 2, my nausea went away almost immediately. A triple dose of folic acid also stopped hair loss from MTX! The pred is incremental in both increase and reduction, follow the regimen, may take a while to reduce to a maintenance dose or nothing. Stay positive and follow the docs' orders! Oh, I'm from Portland, born & bred, St. Johns area. We escaped the 'damp' upon retirement! Best to you!

Jen,
I don't think you should be too concerned about the new nasal symptoms as long as your doc knows about them. They are very common symptoms among us, and by themselves are considered one of the less severe forms of WG/GPA. Though any of us may get other involvements such as lung and kidney. If the nasal stuff really escalates, and possibly expands into your sinuses and ears, your doc may want to increase or change your medication. You also want to avoid a saddle nose, which I have, that is a collapsed septum. I probably have it because my treatment was delayed for 2.5 years while I was treated instead for recurring sinus and ear infections and allergies. I think most people who get early treatment will avoid a saddle nose.

I felt as you do at first with methotrexate. I did get used to it before too long. But I do split the dose between morning and evening, and I do take folic acid every day, which I think is standard. I've been taking it for about 8 years, and have it monitored in my labs for if it is affecting my liver enzymes. Everyone is different, and you could get off it sooner, and I might even be able to, though it is often considered a med for maintaining remission. No one has suggested that I'm in remission, but I think maybe I am, as I'm doing really well. If I did stop or lower the MTX, I would probably still be on my 5mg of prednisone for awhile or indefinitely. Pred is the hardest thing to taper off of, especially at the lower doses, when one has been on it for many months or years. I think there's a trend toward a shorter time on meds for those with moderate cases.
If you are ever up here visiting family, we might run into each other! I sell my pottery at the Olympia Farmers Market, but right now it is only essentials and no crafters except soap and mask makers. And there are flowers, an essential, I guess. So not sure when I'll be back there. BTW, I will turn 68 this year, but I don't look or act it. So maybe we can meet someday. Take care!

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Hi Jen,
Glad you found us. Yes, initially being exhausted goes with the territory. As time goes on and you get regulated on your medication, you will also learn to pace yourself.
I’m sorry you had the gum pain. My first year, I experienced tooth loss. I was on methotrexate then, which caused hair loss. Fortunately, I found things to invigorate my hair and had crowns put on my teeth. I was unable to tolerate the folic acid that goes along with the methotrexate, so I was switched to Rituxin infusions, and that works for me.
Strange disease. Many different effects, and different medication plans.
Having a doctor with GPA experience must give you a good deal of confidence. Are you breathing OK now? Some of us use a SinuPulse machine. I also take Bactrim 3x weekly. Unfortunately, I am still stuck on prednisone, but am looking forward to the new drug Avacopan by ChemoCentryx, which will hopefully be released by the end of the year. The ChemoCentryx site will tell you all about it. I have learned a lot by listening to their conference calls.
You are young (I am 70) and I also get the feeling you are ready to take this bull by the horns. So have at it.
Masha

Hey @annekat, I'll definitely have to check out the Olympia Farmers Market next time I'm up there, maybe I can find you! I'm sorry to hear you have saddle nose, is that something they can repair eventually? Is it uncomfortable? I'm glad to hear you got used to the MTX, I've taken it twice now and felt tired and had a bloated/gurgling/crampy tummy but no nausea. I'm taking the folic acid every morning, I feel like my side effects were less the second time, but maybe that is just wishful thinking.

I think I'm driving my doc crazy with all the questions - I email her every couple of days and she dutifully writes me back the next day. So, she is aware of every little thing happening to me. She thinks the nasal crusting is actually a good sign because some mucous is getting into my nose - instead of all down my throat. Hey, small wins!

Hi @Masha, it sure is a strange disease! So many different ways it can show up. I'm sorry you had tooth loss. My gum swelling made some of my teeth feel a little loose and they have moved a little but are now secure in there. The prednisone/methotrexate has completely cleared up my gums now.

I think I'm tolerating the methotrexate and folic acid okay. The prednisone, not so much. I'm looking forward to tapering off prednisone (I'm on 60 mg a day now), but I have to wait a few weeks before I can start the taper (assuming my blood work is good). It's a love/hate relationship with prednisone I guess. My symptoms have much improved (including the breathing - breathing perfectly fine now), but the side effects are not so fun. Very excited about Avacopan, thank you for sharing!

There's a few of us in the PNW, Jen. I'm in the very far southeast corner of WA. I'm sorry to hear you are joining our club.

Hi, Jen, sorry for the delay. I've been having re-registration problems and can only use tapatalk, on my phone, which is becoming difficult due to it's old age. Time for a replacement.
FYI, the Olympia Farmers Market has been closed to sales by artists and crafters due to Covid-19. But we will be back a few per day starting in June. I have asked for Sundays but don't know yet. If you come up, let me know, and I can tell you if I will be there. It won't be very festive because of the social distancing. We should be back to normal by July or August, I hope!
As for the saddle nose, it's disappointing, but I've learned to live with it. My glasses hide the worst view of it pretty well. Yes, surgery can be done, but one needs to be pretty well in remission. Which I think I am. But I can't see trying to pay for it. If I couldn't breathe through it, Medicare might cover most of it. I've also heard of a substance called Restylane (sp?) which is chemically very similar to the collagen our body makes, which can be injected into the collapsed area to restore the shape, and lasts for some time before needing to be applied again. A forum member told me about it. Something to think about. In my case, saddle nose hasn't been painful, though for some it has. Mine seemed to appear overnight with no warning.
I'm glad it sounds like you are getting used to methotrexate. And prednisone can be pretty problematical especially at the higher doses. 60 MG is a pretty high dose to be on for that long, but your doc must have a strategy. I, too have had a love hate relationship with it in the past. Especially knowing it was eroding my bones. As you taper to lower doses, it may not bother you much. The sooner you can get off it, the better, as it will be more difficult the longer you are on it. Though many stick with a small dose indefinitely to help maintain remission.
Well the phone is acting up; I'd better go.
Anne

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