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

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

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

    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.

    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

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

    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.
    Last edited by Pete; 06-06-2022 at 12:07 PM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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

    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

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

    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 canít comment on your experience there.

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

    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!

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

    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...

    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.
    Living with WG/GPA since june 2010...

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

    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.

    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

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

    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

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

    Quote Originally Posted by marta View Post
    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.

    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. 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.

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

    Quote Originally Posted by dolfinette View Post
    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. 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.
    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.

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