User Tag List

Likes Likes:  24
Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

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

  1. #11
    Join Date
    May 2022
    Posts
    21
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    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. 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! 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!

  2. #12
    Join Date
    Jul 2010
    Location
    Jasper, Alberta, Canada
    Posts
    1,213
    Post Thanks / Like
    Mentioned
    9 Post(s)
    Tagged
    0 Thread(s)

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

    Quote Originally Posted by dolfinette View Post
    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. 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! 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!
    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.

  3. Likes dolfinette liked this post
  4. #13
    Join Date
    May 2022
    Posts
    21
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    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!

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

  5. #14
    Join Date
    Aug 2021
    Posts
    36
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

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

  6. #15
    Join Date
    May 2022
    Posts
    21
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

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

    Hi [email protected]$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.

  7. Likes drz liked this post
  8. #16
    Join Date
    May 2021
    Posts
    13
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

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

    Quote Originally Posted by Pete View Post
    Hi Arlene,

    Iíll 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 donít 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. Iím 11 years in at age 75 (almost 76). I lead a lifestyle very similar to my pre-GPA life.

    Iíd 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

  9. #17
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,323
    Post Thanks / Like
    Mentioned
    19 Post(s)
    Tagged
    0 Thread(s)

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

    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 donít 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.
    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

  10. Likes Masha, dolfinette, Dev liked this post
  11. #18
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    302
    Post Thanks / Like
    Mentioned
    17 Post(s)
    Tagged
    0 Thread(s)

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

    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.

  12. Likes dolfinette liked this post
  13. #19
    Join Date
    May 2021
    Posts
    13
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

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

    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!

  14. Likes Masha, Pete liked this post
Page 2 of 2 FirstFirst 12

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •