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

[dolfinette]

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

[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.

[dolfinette]

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

[John S]

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.

[dolfinette]

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!

[chrisTIn@]

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.

[KathyTPA]

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 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

[Pete]

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.

[Masha]

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.

[KathyTPA]

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!