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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