Some questions my doctor hasn't answered (well a lot of questions LOL)

Hi everyone! I hope you're having a wonderful weekend. :smile1:

I'm in the process of getting another rheumatologist because my current one who I've gone to since September 2021 doesn't communicate well with me. I have several questions that I'm planning on asking the new one at the end of the month (long wait times to see anyone!) but I'm wondering if any of you can provide me some information on the main questions that my husband and I have.

1) How quickly can GPA turn into "life-threatening"? Are there warning signs? My doctor made it seem like it happens fast and you cough up blood and can't breathe and have to go to ER! That's a bit scary if that's true but since I'm still not in remission after all this time--somewhere b/w 10-14 months we think--I'd like to prepare! ;)

2) I seem to have lost my taste for some food/drinks since the Rituxan--does that ever come back?

3) I've been slowly losing weight for about 1 year now (I went from 98 lbs to 90ish now). I've told all my doctors, especially my rheumatologist, and though they say it isn't good only my GI is really concerned and trying to help. With GPA does your weight just keep slowly dropping until you are in remission? I already look like Peter Pan's sister LOL! Seriously, my BMI is ~16 and I make myself eat even when I'm not hungry or feeling well.

4) I currently take Nasonex, Azelastine spray, Claritin D, and Montelukast daily just so I can breathe and I still have to blow my nose several times daily to try and get those "things" out of my nose before they get bigger. Is there anything else I should try?

5) Ever since I hit menopause at 49 (I'll be 53 in October) I've had insomnia. I've tried everything from natural supplements (ie melatonin) to benadryl to ambien to ambien er to sonata and my body just adapts to the pills over time and makes them less effective. I ever did a sleep clinic and CBT and was finally able to sleep 7 hours without any pills until my 2nd moderna vaccine triggered frozen shoulder and, apparently, GPA. Now my rheumatologist has me on 1-2mg lorazepam per night and that is the only way I sleep now (5-7 hours). Is GPA making sleep worse for you also?

6) Finally, sorry if this sounds grim, does anyone know how life expectancy is affected regarding active GPA? Since I'm still not in remission I'm just curious! I am totally fine with whatever happens and am grateful I've lived this long anyway so the answer really won't make me sad...it is really because I hate not knowing and it took a team of doctors months of testing and cutting a chunk of my lung out to finally diagnose me. I'd just rather be prepared than have no clue. :smile1:

I apologize for such a lengthy message and hope it is ok asking these things! I'm sorry if I triggered anyone inadvertently, too--I'm just so clueless on so many levels and I don't want Google to be my answers until I can see the new doctor LOL!

Any info would be greatly appreciated!!!
Arlene :)

Hi Arlene,

I’ll take a shot at a few of your questions.

1. Given where you are with the disease, it probably won't become life threatening on its own. Some other issue may arise, and that could be life threatening. I developed pneumonia about a year after I was diagnosed. That really hit me hard. I had persistent hiccups, crushing fatigue, and coughed so hard that I either pulled a ribcage muscle or broke a rib. My BP was 80/40 at one point.

4. You might want to do sinus rinses to flush out excess mucous and crusts. You can get a neti-pot and 100 salt packets for about $20. Mix the salt with distilled water so you don’t accidentally introduce bacteria into your sinuses.

6. GPA probably does have some impact on life expectancy, but probably not too much as long as the disease is somewhat controlled. I’m 11 years in at age 75 (almost 76). I lead a lifestyle very similar to my pre-GPA life.

I’d get the unexplained weight loss checked out. You may have something else going on. It could be a side effect from a medication or who knows what else.

Hope this helps.

Thanks SO much for all of your input, Pete! It really helps a lot to hear someone else's experience and I'm incredibly happy that you're doing so well 11 years in! :)

I've had some bouts of extremely low blood pressure also but fortunately didn't have to go to ER. And I'm sure you're right about the weight loss...I think it is all the meds hitting me. All 5 of my doctors know and realize it is problematic but have no real solution...they keep saying to get my GPA under control and in remission first before dealing with that issue. I suppose if I get down to 85 or so I'll bring it up yet again!

Thank you!!!
Arlene

Yes, a daily nasal rinse has been very helpful for me. Even then, problems persisted till an ENT did sinus surgery.
I have not had any issues with weight loss so can’t comment on your experience there.

Thank you, John!!! I'll definitely look into that sinus rinse you and Pete mentioned! :) I'm so glad neither of you experienced the unexplained weight loss...it really throws a wrench into everything!

I recognize the weightloss that you mention.
Prior to my diagnose of GPA I also lost weight.
After proper treatment my bodyweight became 'normal' for my lenght again.
I am even a few pounds heavier, I think... :blushing::wink1:

I also suffered from insomnia a lot.
Nowadays I sleep better again.
GPA is in remission, in my case, but I still have 'mini-flares' from time to time.
I have got the feeling that my sleepingpattern is worse, in times of GPA flairing up.
When the flare is over, I also sleep better again.

I hope this helps.
And I also hope you will find a doctor that has a lot of experience with GPA/Wegeners disease.
The more patients with GPA a doctor sees, the better he is with treating the disease...
I think most group-members on this forum will agree with that.

Hey Arlene,

I'm gonna give this a crack too. Everything Pete said is gold, I'm gonna add my own spin to it, as this thing hits us all differently, but the overall arching theme is the same. I'm just giving you my two cents, opinions, and observations. Take what feels right, ignore what doesn't. If there's one thing I've learned from living with Wegener's over the last 12-13 years, is that you gotta follow your gut instincts. Get away from docs who don't have your best interest in mind, and hold onto the good docs with all your might, they're few and far between for this disease.

Here goes:
1) How quickly can GPA turn into "life-threatening"? Are there warning signs? My doctor made it seem like it happens fast and you cough up blood and can't breathe and have to go to ER! That's a bit scary if that's true but since I'm still not in remission after all this time--somewhere b/w 10-14 months we think--I'd like to prepare! ;)

Kidney failure is one of the big things that take out weggies pre diagnosis, and compromised immune issues are what take us down post diagnosis. Now that you're diagnosed, I don't see disease process being the take down, so I personally am very careful not pushing my immune compromised state too far. Once on treatment, it's pneumonia, and other things that people with strong immune systems (not compromised by immune suppressing drugs, the ones that keep us alive, lol) can fight off without blinking their eyes. So stay safe from other people's germs. I personally avoid hospitals, and doctor's offices, lol, which seem to be the most dangerous activity we do post diagnosis.

2) I seem to have lost my taste for some food/drinks since the Rituxan--does that ever come back?

I had lost smell and taste for three/four years myself. I don't think it was the RTX, but I do think it was the disease process. My hearing was quite gone at that time (it still is, but not to the same level) and then they all came back on the same day. It was a spring day, I was in the yard, and suddenly I could hear the kids in the school yard playing (five blocks away), I could smell the lilacs, and suddenly I smelled the dog poop, and remembered that YES, there are good and bad smells, lol. I think that's the inflammatory process in the blood vessels of our sinuses, and head area. Once the inflammation is gone, the normalcy comes back.

3) I've been slowly losing weight for about 1 year now (I went from 98 lbs to 90ish now). I've told all my doctors, especially my rheumatologist, and though they say it isn't good only my GI is really concerned and trying to help. With GPA does your weight just keep slowly dropping until you are in remission? I already look like Peter Pan's sister LOL! Seriously, my BMI is ~16 and I make myself eat even when I'm not hungry or feeling well.

I was going to ask you on the previous one if you take prednisone. It gets rid of the inflammation, and subsequently the pain, but comes with a bunch of stuff that is quite gross. The physical expansion of face, yuck. An appetite that is unlike anything I've ever felt before. And sadly it keeps you from sleeping. I think I went through about 5 years where I slept no more than a couple of hours a night. It sucked so so bad, but I refused to take sleeping pills because I was scared of getting hooked on them. Ironically I would take a morphine from time to time because it gave me a good sleep for four hours, and I would only take it once in a blue moon to just feel like I get a bit of a catch up. The munchies on pred however are next level. I remember when I was on 60mg, I wanted to eat everything, all the time. I looked at a stack of thank you cards I had written to friends, and they looked like a slice of cake from my perception, so my brain made me start salivating, lol. Low dose of pred, if you're not on it, might help with the appetite and some other things too. It will not help with sleep.

4) I currently take Nasonex, Azelastine spray, Claritin D, and Montelukast daily just so I can breathe and I still have to blow my nose several times daily to try and get those "things" out of my nose before they get bigger. Is there anything else I should try?

Like Pete said, the Neti pot. It was so out of the box for me to try. I can't swim and I hate water up my nose, but it wasn't even remotely like that. It's actually kind of shocking how it goes through you, and it does stop the hard build up that accumulates in there. I've also become a master snot farmer. I can empty my nose with the 'snot rocket' method, and I'm sure it's kept me from getting other bugs. I'm sure it annoys the crap out of my family, but it keeps my nose empty, and that's a great feeling, as we all know.

5) Ever since I hit menopause at 49 (I'll be 53 in October) I've had insomnia. I've tried everything from natural supplements (ie melatonin) to benadryl to ambien to ambien er to sonata and my body just adapts to the pills over time and makes them less effective. I ever did a sleep clinic and CBT and was finally able to sleep 7 hours without any pills until my 2nd moderna vaccine triggered frozen shoulder and, apparently, GPA. Now my rheumatologist has me on 1-2mg lorazepam per night and that is the only way I sleep now (5-7 hours). Is GPA making sleep worse for you also?

I alluded to this in number 3, but I also think that dealing with the collection of symptoms that tend to act up in the evening and overnight. I still have horrible sleeps compared to pre WG, but it's much better than it was in the early years of having this. Things normalize. Just give it time, and try and figure out how the best way to make it through each day with even a little bit of joy and laughter. I have to tell you that despite the grossness of WG, I feel like I've gotten so much more out of it than it got out of me. Find the blessings. There are so many.

6) Finally, sorry if this sounds grim, does anyone know how life expectancy is affected regarding active GPA? Since I'm still not in remission I'm just curious! I am totally fine with whatever happens and am grateful I've lived this long anyway so the answer really won't make me sad...it is really because I hate not knowing and it took a team of doctors months of testing and cutting a chunk of my lung out to finally diagnose me. I'd just rather be prepared than have no clue. :smile1:

I think on this note it's a matter of finding a good doctor you can coordinate with, and work on keeping you healthy together. I think that's the biggest factor in life expectancy. When I was really active on here in the early days, the worst outcomes came with doctors who took on WG patients with minimal knowledge of the actual disease and treatment protocols. It was either a case of under medicating or over medicating that took lives. The biggest factor now is balancing the meds, making sure you are on top of it, being an active patient and bringing yourself to a point of remission where you don't have to think about it too much. Once there, things can change, flares come and go, but the more you educate yourself on the disease, its manifestations, complications, treatment protocols, the better informed the conversations with your doctors and better chances of coming out on the other side. It's the most wonderful feeling when you sit down with a doc, and come up with an alternative treatment protocol that you came up with in order to avoid a high risk treatment that would affect you indefinitely. I've been here for 13 years now since diagnosis.

Hope my blabbering isn't killing you slowly, lol.
I will now stop blabbering.

Reach out any time if you like
- I tend to ramble on infinity. It's a problem.

Peace,
marta

Thank you Christin! Your input definitely helps! :) I sure hope I get into remission soon so that I can get back to a semi-normal sleep pattern (hopefully without meds) and regain the weight I lost.

Arlene :biggrin1:

Quote:

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Originally Posted by marta

Hey Arlene,

I'm gonna give this a crack too. Everything Pete said is gold, I'm gonna add my own spin to it, as this thing hits us all differently, but the overall arching theme is the same. I'm just giving you my two cents, opinions, and observations. Take what feels right, ignore what doesn't. If there's one thing I've learned from living with Wegener's over the last 12-13 years, is that you gotta follow your gut instincts. Get away from docs who don't have your best interest in mind, and hold onto the good docs with all your might, they're few and far between for this disease.

Here goes:
1) How quickly can GPA turn into "life-threatening"? Are there warning signs? My doctor made it seem like it happens fast and you cough up blood and can't breathe and have to go to ER! That's a bit scary if that's true but since I'm still not in remission after all this time--somewhere b/w 10-14 months we think--I'd like to prepare! ;)

Kidney failure is one of the big things that take out weggies pre diagnosis, and compromised immune issues are what take us down post diagnosis. Now that you're diagnosed, I don't see disease process being the take down, so I personally am very careful not pushing my immune compromised state too far. Once on treatment, it's pneumonia, and other things that people with strong immune systems (not compromised by immune suppressing drugs, the ones that keep us alive, lol) can fight off without blinking their eyes. So stay safe from other people's germs. I personally avoid hospitals, and doctor's offices, lol, which seem to be the most dangerous activity we do post diagnosis.

2) I seem to have lost my taste for some food/drinks since the Rituxan--does that ever come back?

I had lost smell and taste for three/four years myself. I don't think it was the RTX, but I do think it was the disease process. My hearing was quite gone at that time (it still is, but not to the same level) and then they all came back on the same day. It was a spring day, I was in the yard, and suddenly I could hear the kids in the school yard playing (five blocks away), I could smell the lilacs, and suddenly I smelled the dog poop, and remembered that YES, there are good and bad smells, lol. I think that's the inflammatory process in the blood vessels of our sinuses, and head area. Once the inflammation is gone, the normalcy comes back.

3) I've been slowly losing weight for about 1 year now (I went from 98 lbs to 90ish now). I've told all my doctors, especially my rheumatologist, and though they say it isn't good only my GI is really concerned and trying to help. With GPA does your weight just keep slowly dropping until you are in remission? I already look like Peter Pan's sister LOL! Seriously, my BMI is ~16 and I make myself eat even when I'm not hungry or feeling well.

I was going to ask you on the previous one if you take prednisone. It gets rid of the inflammation, and subsequently the pain, but comes with a bunch of stuff that is quite gross. The physical expansion of face, yuck. An appetite that is unlike anything I've ever felt before. And sadly it keeps you from sleeping. I think I went through about 5 years where I slept no more than a couple of hours a night. It sucked so so bad, but I refused to take sleeping pills because I was scared of getting hooked on them. Ironically I would take a morphine from time to time because it gave me a good sleep for four hours, and I would only take it once in a blue moon to just feel like I get a bit of a catch up. The munchies on pred however are next level. I remember when I was on 60mg, I wanted to eat everything, all the time. I looked at a stack of thank you cards I had written to friends, and they looked like a slice of cake from my perception, so my brain made me start salivating, lol. Low dose of pred, if you're not on it, might help with the appetite and some other things too. It will not help with sleep.

4) I currently take Nasonex, Azelastine spray, Claritin D, and Montelukast daily just so I can breathe and I still have to blow my nose several times daily to try and get those "things" out of my nose before they get bigger. Is there anything else I should try?

Like Pete said, the Neti pot. It was so out of the box for me to try. I can't swim and I hate water up my nose, but it wasn't even remotely like that. It's actually kind of shocking how it goes through you, and it does stop the hard build up that accumulates in there. I've also become a master snot farmer. I can empty my nose with the 'snot rocket' method, and I'm sure it's kept me from getting other bugs. I'm sure it annoys the crap out of my family, but it keeps my nose empty, and that's a great feeling, as we all know.

5) Ever since I hit menopause at 49 (I'll be 53 in October) I've had insomnia. I've tried everything from natural supplements (ie melatonin) to benadryl to ambien to ambien er to sonata and my body just adapts to the pills over time and makes them less effective. I ever did a sleep clinic and CBT and was finally able to sleep 7 hours without any pills until my 2nd moderna vaccine triggered frozen shoulder and, apparently, GPA. Now my rheumatologist has me on 1-2mg lorazepam per night and that is the only way I sleep now (5-7 hours). Is GPA making sleep worse for you also?

I alluded to this in number 3, but I also think that dealing with the collection of symptoms that tend to act up in the evening and overnight. I still have horrible sleeps compared to pre WG, but it's much better than it was in the early years of having this. Things normalize. Just give it time, and try and figure out how the best way to make it through each day with even a little bit of joy and laughter. I have to tell you that despite the grossness of WG, I feel like I've gotten so much more out of it than it got out of me. Find the blessings. There are so many.

6) Finally, sorry if this sounds grim, does anyone know how life expectancy is affected regarding active GPA? Since I'm still not in remission I'm just curious! I am totally fine with whatever happens and am grateful I've lived this long anyway so the answer really won't make me sad...it is really because I hate not knowing and it took a team of doctors months of testing and cutting a chunk of my lung out to finally diagnose me. I'd just rather be prepared than have no clue. :smile1:

I think on this note it's a matter of finding a good doctor you can coordinate with, and work on keeping you healthy together. I think that's the biggest factor in life expectancy. When I was really active on here in the early days, the worst outcomes came with doctors who took on WG patients with minimal knowledge of the actual disease and treatment protocols. It was either a case of under medicating or over medicating that took lives. The biggest factor now is balancing the meds, making sure you are on top of it, being an active patient and bringing yourself to a point of remission where you don't have to think about it too much. Once there, things can change, flares come and go, but the more you educate yourself on the disease, its manifestations, complications, treatment protocols, the better informed the conversations with your doctors and better chances of coming out on the other side. It's the most wonderful feeling when you sit down with a doc, and come up with an alternative treatment protocol that you came up with in order to avoid a high risk treatment that would affect you indefinitely. I've been here for 13 years now since diagnosis.

Hope my blabbering isn't killing you slowly, lol.
I will now stop blabbering.

Reach out any time if you like
- I tend to ramble on infinity. It's a problem.

Peace,
marta

---

Wow thank you Marta for all of this wonderful information!!! You've told me WAY more than my doctor!!! I do my best to stay away from germs and rarely leave my apartment except to go to doctors. I'm not on prednisone because after 2 months I was crying daily and very depressed (oh and I had all the other horrible side effects too :\). The methylprednisolone had the same effect so I'm not on that either. I'm so glad you didn't take the sleeping pills...I'll never be the same because of them. My body is addicted to the ativan (lorazepam) now and I can't sleep at all without it--plus I get a horrible migraine the next day if I don't take them. :crying: My taste is mostly gone and my vision and hearing are definitely worsening.

I'm in the process of trying to get a new rheumatologist who can better help me but it just takes a long time. I'm definitely looking forward to meeting her at the end of the month! And I can't emphasize enough that you definitely aren't "blabbering"...your help is so appreciated, please know that! I'm actually in tears as I'm typing this because I appreciate how caring you and everyone are and how I've gotten more support here on the forums than I have from all my doctors combined! Thank you from the bottom of my heart. :hug3:

Quote:

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Originally Posted by dolfinette

Wow thank you Marta for all of this wonderful information!!! You've told me WAY more than my doctor!!! I do my best to stay away from germs and rarely leave my apartment except to go to doctors. I'm not on prednisone because after 2 months I was crying daily and very depressed (oh and I had all the other horrible side effects too :\). The methylprednisolone had the same effect so I'm not on that either. I'm so glad you didn't take the sleeping pills...I'll never be the same because of them. My body is addicted to the ativan (lorazepam) now and I can't sleep at all without it--plus I get a horrible migraine the next day if I don't take them. :crying: My taste is mostly gone and my vision and hearing are definitely worsening.

I'm in the process of trying to get a new rheumatologist who can better help me but it just takes a long time. I'm definitely looking forward to meeting her at the end of the month! And I can't emphasize enough that you definitely aren't "blabbering"...your help is so appreciated, please know that! I'm actually in tears as I'm typing this because I appreciate how caring you and everyone are and how I've gotten more support here on the forums than I have from all my doctors combined! Thank you from the bottom of my heart. :hug3:

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Awww, thank you! I'm glad anything I said helps. I really do ramble on though, ha ha

Without a doubt in my mind, I can say that the people on this forum saved my life in my early days/months. It's hard to navigate this disease in the start, but once you get a hold of it, figure out the meds in the lowest amount possible, you start to learn how your body reacts to what, and let's face it, we're on some pretty heavy drug cocktails at the front end. Once that all gets figured out, then you're finding the new, awesomer ;) stronger you. I feel like I know far more than a person who didn't go to med school should know, but I sure am an expert in my manifestation of this disease. Plus navigating the healthcare system. I've figured that out. So on that note, if you are close enough to your new rheumatologist, give them a call and tell them that you're available to come if they have a cancellation. Tell them your vision and hearing are worsening, and you think the sooner they see you the better, so you'll come in when they call you. If that's even a possibility. But if it's a good doctor, and they see those symptoms worsening in a patient, they'd want to intervene as soon as possible.

As for the steroids, try and find an alternative, because I think the treatment protocol that has worked best, requires both immune suppression and strong anti inflammatory (steroids). Once you stop active disease, you can wean, and weaning off pred has to be the worst thing, ughhh, but I'm full of advice on that one too, lol.

I think the purpose of the game is to stop a flare, including the first one/onset. Once the flare is under control, you tweak the meds, slowly until you find the best place to be and have a normal life. I tried going drug free in 2015, and had a horrible flare in 2016 that gave me pulmonary emboli and a cavitating lung lesion on top of the previous bag of goodies, so I've been on low dose imuran, blood thinner and dapsone since. I take pred to thwart flares, but my last significant flare was in 2019, my last RTX (I asked for a quarter dose).

AS I said before, I'm here if you want to reach out. Not sure I can talk much about the newer drugs, but I have lots to say on the stuff I've taken, and the research that I've done, over the last bakers dozen years. Take care of yourself, and use this forum. It was the best thing in my life for many years. I'm glad I'm not needing it right now, but who knows what the future holds. Nobody. Right? Enjoy every moment that you can enjoy. Find reasons to laugh. And know, KNOW, that you'll be so much stronger on the other end. :hug3:

Wow, you have such fabulous positive energy, Marta! I'm SO happy that you've been in remission since 2019 too! I'll definitely take note of everything you mentioned and discuss it with my new doctor. They already have me on a wait list for cancellations and got me in at the end of June instead of August at least!

I can imagine weaning of prednisone would pretty much suck. :frown: I'm dreading the point where they are going to let me wean off lorazepam but that won't happen until I'm in remission--actually I have a few problems that are being placed on hold until the GPA is under control including my lovely IBS issues! :crying: I know most of my non-GPA problems stem from of all the meds being thrown into my body so my primary care doctor and GI doctor both have specifically said to do my best to hang in there with the other issues until remission. It is definitely challenging and some days are much worse than others but reading about your journey as well as those of others who have gotten through and are in a good place now shines some light at the end of this crummy time!

Thanks for being such an inspiration to me and others, Marta! :hug3:

Quote:

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Originally Posted by dolfinette

Wow, you have such fabulous positive energy, Marta! I'm SO happy that you've been in remission since 2019 too! I'll definitely take note of everything you mentioned and discuss it with my new doctor. They already have me on a wait list for cancellations and got me in at the end of June instead of August at least!

I can imagine weaning of prednisone would pretty much suck. :frown: I'm dreading the point where they are going to let me wean off lorazepam but that won't happen until I'm in remission--actually I have a few problems that are being placed on hold until the GPA is under control including my lovely IBS issues! :crying: I know most of my non-GPA problems stem from of all the meds being thrown into my body so my primary care doctor and GI doctor both have specifically said to do my best to hang in there with the other issues until remission. It is definitely challenging and some days are much worse than others but reading about your journey as well as those of others who have gotten through and are in a good place now shines some light at the end of this crummy time!

Thanks for being such an inspiration to me and others, Marta! :hug3:

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That's so awesome that you've moved it ahead. Yay!
Don't listen to me on detail stuff because all of us are a little different, and I'm a bit of a know-it-all, but if I have any advice for changing to a new doctor, go in with your questions written down, and that way everything gets answered. If you can get someone to come and take notes, do, there's so much information flying around about a disease you have no experience with, it's hard to retain much. Overwhelming. Also when I changed docs, I thought I'd arm the new one with as much info as I could. I gave her the chronology of all my symptoms, the chronology of medical attempts to find and treat, every doc I went to, and what they said and did since my first symptoms. I had it in a nice little folder, and just gave it to her. She laughed, but she now knew everything that I knew. She's told me since that she really appreciated it. Moving to her was the best thing I ever did with this disease.

Also I'm willing to bet that the IBS starts to resolve itself with the GPA treatment. They're both autoimmune diseases, both have the same etiology, but manifesting in different spots. It might even be GPA related. I had other AI issues that were more annoying before diagnosis, including allergies, and everything went away with treatment. Who knows. There are some blessings that come out of a perceived curse.

Stay well.

I've already faxed 30 pages of tests, notes, etc. to my new doctor and have hard copies ready to bring LOL! Now it's just a matter of being patient and hoping things work out. In the meantime I get to have a broken crown re-done in 3 hours! :drool:

Stay safe and thanks again so much for the encouragement and information. :smile1:

How often do flare ups happen after remission and does that cause the need for the return of Rituxan?

Hi J@$ON!

Sorry I can't answer your question since I'm still not in remission after almost a year so I'm not even sure what a flare up is LOL! It has been about 3 weeks since my 2nd Rituxan infusion and I have lost 90% of my taste and smell but, of course, no improvement of my GPA symptoms yet. I guess it just gets worse and worse before it gets better! LOL Well at least for me it has. I still have all the daily pain, fatigue, sinus/nose stuff, intermittent voice, horrible IBS, etc. that I've had since starting treatment in October. Also I was 88 lbs. when I checked yesterday so I'm slowly trending downward too. I hate to say it but I felt better before all the methotrexate/steroids/failed meds LOL! Ah, I have to laugh because it is better than getting frustrated or crying! ;)
I hope everyone is doing great and in remission (or near it)! And for those of us who aren't, hang in there because you aren't alone. :hug3:

Quote:

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Originally Posted by Pete

Hi Arlene,

I’ll take a shot at a few of your questions.

1. Given where you are with the disease, it probably won't become life threatening on its own. Some other issue may arise, and that could be life threatening. I developed pneumonia about a year after I was diagnosed. That really hit me hard. I had persistent hiccups, crushing fatigue, and coughed so hard that I either pulled a ribcage muscle or broke a rib. My BP was 80/40 at one point.

4. You might want to do sinus rinses to flush out excess mucous and crusts. You can get a neti-pot and 100 salt packets for about $20. Mix the salt with distilled water so you don’t accidentally introduce bacteria into your sinuses.

6. GPA probably does have some impact on life expectancy, but probably not too much as long as the disease is somewhat controlled. I’m 11 years in at age 75 (almost 76). I lead a lifestyle very similar to my pre-GPA life.

I’d get the unexplained weight loss checked out. You may have something else going on. It could be a side effect from a medication or who knows what else.

Hope this helps.

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Thanks everyone for all your words of wisdom, strength, truth and experience.

on weight issues - while I was very sick prior to predninsone, I lost 14 lbs over a 2 month period. I stopped losing weight with pred 60mg at first, then started gaining slowly and I still have not taken it all off. I have been off pred since 8/2021. However, I find in isolation I am snacking more. I am up 18 lbs from my original pre-sickness weight. I want to get back there, yet a little blue lately and cookies help me feel better! I am exercising again, yet not at the intensity of pre-GPA. My biggest symptoms were sinus (still some issues but so much better) some permanent hearing loss (again so much better) and my left eye is damaged, I can see and we are monitoring it. I AM SO FRIGHTENED TO GET ANY INFECTION, for fear of it worse than the 1st 2 flares, more damage and if it moves to other organ especially lungs and kidneys. This fear weighs on me emotionally.

I am curious about "I lead a lifestyle very similar to my pre-GPA life" ... Maybe it is due to covid and I am newly diagnosed 12/11/20, no flare since 6/21. I have nearly lived in isolation. AVOIDING people's germs is one way I have learned to avoid a FLARE. Is that right?

A) my questions are: How did you navigate life pre-covid with GPA successfully (I want to really live, yet afraid)

B) If anyone has isolated for that past 1.5 years - are you getting depressed more and is it taking you alot to snap out of it? I am trying. Any times to turn that corner.
(in my town right now there are over 1300 cases of covid a day, it has been over 700 a day for about 5 weeks; so I am being extra careful)


I am grateful my diagnosis was early and aside from some sinus congestion, fatigue and hearing loss. I manage well every day. My eye doctor diagnosed me and the rheumy I started with advised me to go with DR with experience. He is at the USF and affiliated with the Vasculitis FDN, however he has no bedside manner. Last issue, verbally in March he promised to write a letter to my employer so that I could continue to work from home. However, then he said he would have to do that for everyone in May when I needed it. I had to have my ENT write the letter.

On Docs in general, I have learned to ask alot of questions, do your research and kindly ask for help. I finally found the best ENT. the first one missed GPA and told me I was a weird case. The 2nd one wanted to do cosmetic surgery (saddle nose) and the eye tearing YET offered no help for the daily discharge, pain and discomfort. This new ENT is willing to adjust my sinus regime until it is right. I see him on Friday. I trust him and he cares.
As far as sleeping it is better now that I am off pred; however I wish it was consistent. I sleep pretty good 2/3 nights a week. I rest alot on the weekends.
I would love to talk to someone. If it is ok, please call me in Tampa Florida 813-288-2688 cell.

hope I shared something that may help someone and thanks for listening.
Kathy

Quote: I am curious about "I lead a lifestyle very similar to my pre-GPA life" ... Maybe it is due to covid and I am newly diagnosed 12/11/20, no flare since 6/21. I have nearly lived in isolation. AVOIDING people's germs is one way I have learned to avoid a FLARE. Is that right? End quote.

Pre-Covid, I did all the activities I did before GPA. I walked 2-3 miles most days, did Silver Sneakers a couple times a week, did lap swimming occasionally, and played bad golf in the summer. I also did all my own yard work until we moved into a condo. During Covid, indoor workouts at the Y stopped. I walked 2-3 miles outdoors unless it was too cold or icy.

We don’t eat out as often now (expensive). I still wear a mask to stores and haircuts. We did go to a family reunion in Kentucky last weekend. Other than hand washing, we took no other precautions.

I got my second Covid booster today, and will get another dose of Evusheld in August.

Hi Kathy,
This has been a difficult time for all of us. Try not to think of yourself as fearful, just cautious. I am 72 and my husband is 79. My perspective is probably different than yours. I have had a very full life and not diagnosed with GPA until 67.
After retirement I enjoyed many activities and clubs. But after the diagnosis, until my medication was regulated, I was so weak and sick my life changed. Even after I got stronger I did not rejoin things. The people I was with were also seniors and inevitably someone was sick. I knew being in a crowded room with unknown illnesses would just trigger me. Slowly, I began to invite others over, always emphasizing not to come if they were unwell. I still shopped (masked even before Covid). My husband and I enjoyed dining out, not during busy times and sought tables that were not in the center of things.
Then with Covid the world stopped. Groceries are ordered through Instacart and they put them in the trunk. The worst event was that one of my two dogs died. I work at moving forward. We got a puppy but she will never replace Oscar. Many Covid cases where I live too. I am still weaning off my five years of prednisone that not only caused weight gain but gifted me with diabetes. Currently on low carbs. I get Rituxin infusions twice a year, very positive game changer. Are you on Bactrim as a preventative?
I understand you must be frustrated. This will pass. You are probably young with a career. There will be life after Covid. My only advice is to try and keep your mind as busy as possible. I read at least one or two books a week, downloaded from library on my kindle. If you have a hobby that would be great. I avoid the news, that is too depressing. Do you have family or friends that could come for a visit? If you can continue to work from home, get a dog. This would be a great bonding time. Remember this would not be a good travel time, airlines are all overbooked. Can you take walks on the beach? That would be safe and healthy and lift your spirits. Maybe treat yourself to a take out meal. Florida is full of Publix and you can build and order your sub or salad over the internet, go to Publix deli on internet. If you are masked, KN95, it would be safe to pick up. Ask us questions.

Thanks Pete & Masha!

I am 61, got diagnosed 2 days after my 60th birthday. I walk outside in the mornings. in hillsborough county covid cases are 1382 per day - very high; so I am not venturing out at all.
I am on Bactrim 3x a week. Rituxan in March was on 500mg, last year I had 3 infusions of 1000mg. My sinuses have been congested for 3 weeks and went to ENT this morning, he is prescribing a new compound to flush out.
Looking forward to covid cases going below 200 here again, so I am more comfortable being with people. I am super careful, but most people aren't anymore. I do not want to get a cold, sinus infection, covid or anything.
I work remotely and trying to get it to be permanent. My company is pushing back on the requests, they want people in the office and they had changed the floors to accommodate 483 people instead of the 240 it used to be a few years ago. I need to work at least 3.5 years safely! fingers crossed.
wishing everyone a good day!