User Tag List

Likes Likes:  43
Page 3 of 3 FirstFirst 123
Results 21 to 29 of 29

Thread: Changing irrigation tools?

  1. #21
    Join Date
    Sep 2013
    Location
    Northern Illinois, USA
    Posts
    788
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by drz View Post
    The med I was given for use in the sinus rinse was made by adding Micropuricin to a liquid where it is pulverized and then frozen and then thawed as you use it. It was very expensive and had to be custom made at special facility. It took so long for me to get it that by then I had the infections under control and never had to use it..

    My ENT and I have a way around paying for the compounding of drugs with saline for nasal rinses. He prescribes both items (sterile saline bottles and antibiotic) separately and insurance pays for it. I then mix it myself, per the doc's recipe, as needed. Mixing it at home also extends the shelf life so I do not have to freeze or clog up my fridge with all the bottles.

    Hope this helps some of you.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  2. Likes annekat, drz, Alysia liked this post
  3. #22
    Join Date
    Sep 2013
    Location
    Northern Illinois, USA
    Posts
    788
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by Masha View Post
    Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse.
    You are welcome to ask me anything in regards to nasal rinsing. I have done some radical things with the waterpik type devices and it has saved my nose from the wegs crusting.

    Quote Originally Posted by Masha View Post
    I can’t even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical.
    I had really serious sinus issues for about 6 years before diagnosis. My nose is the best it has been in 12 years. I attribute it to RTX, and insistently and relentlessly rinsing out the crusts. It will take time, so hang in there. It should get better.

    Quote Originally Posted by Masha View Post
    Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. I’ve been on more and less. Less and I get a flare.
    (ALL OF THESE WERE APPROVED BY MY ENT DOCTOR) I use Alkolol Solution that is available at pharmacies over the counter. Try not to use it straight as advertised. I've also used Johnson's Baby Shampoo to help with the irritation. As far as prescriptions go, I have used budesonide (steroid used in nebulizer machines), Bactroban ointment, and gentamicin--all mixed in sterile saline bottles. I've also been on a host of oral antibiotics. What used really depends on what kind of infection you are fighting at the root of the sinus flare-ups. Have your ENT do a culture to determine what the infection is before he/she prescribes something that your infection is probably resistant. If you use up all the types of antibiotics on a "let's see how this one works" basis, you may become resistant to it and need it later. I won't take anything unless we KNOW that it will work on the infection. Lately, Doxycycline and Bactroban have been the best to treat my infections.

    Quote Originally Posted by Masha View Post
    Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions don’t work we are going to Cytoxan infusions.
    Yep, treatment will vary for each of us. Remember, you are writing your own book of your unique disease. Treatment will be yours and unique to you. I hope you do not have to go the route of Cytoxin. That has far more side effects than the Rituxan.

    Quote Originally Posted by Masha View Post
    Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless y’all. Masha
    What you have said does not sound too aggressive. I've been through exactly what you are doing. Pred sucks all around, but eventually, let's hope you can get off of it. It took me almost 3 years, and I have been pred-free since 2015!!

    Never be embarrassed to ask questions--with us or your doctors. YOU need to be your own advocate and learn as much about this disease as you want to know. Many of us are short-term and long-term veterans of this awful disease, and we are more than willing to share our experiences with you--good and bad.

    Hang in there, the tunnel may look closed, but there is light past the construction zone!!!


    Last edited by MikeG-2012; 03-20-2018 at 01:13 AM.
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  4. Likes Pete, annekat, Alaskatom, Alysia liked this post
  5. #23
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    3,765
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by Masha View Post
    Great Post. You and Lilly and the others have answered some of my questions. After reading the posts I ordered a Sinu Pulse. The wegs put a hole in my nose. Thinking it was the result of a car accident I have had almost a dozen sinus surgeries. How different my life would have been if I was properly diagnosed years ago. I lost sense of smell 45 years ago in accident. I canít even imagine life without sinus pain. Sometimes it feels like an elephant is sitting on the right side of my face. The ENT who diagnosed wegs last year has had me on an oral antibiotic that is working. Two weeks off then another month of Rituxan infusions. The docs seem to think they can make me better. But I am skeptical. Where do you get the medicine you put in the rinse? On 12.5 mg Prednisone- I hate it. Iíve been on more and less. Less and I get a flare. Does the number of infusions and remission differ with everyone? Rheumatologist said if next Rituxan infusions donít work we are going to Cytoxan infusions. Since I am sinus limited does this sound too aggressive? So many questions and so many of you are at a far more advanced stage than I, that I feel guilty even asking questions. Bless yíall. Masha
    Masha, It took me 2 rounds of rtx, 6 months between them, so that only after 9 months since the first rtx IV - my nose started to get better. Other wg symptoms started to become better after 3 months. My nose was the most stubborn. Rtx can still work for you.
    Alysia
    dx 2008


    Here, I found my sweet love, my beautiful Phil
    https://www.wegeners-granulomatosis....emorial-thread
    During long scary weeks at the hospital, my sweetie used to tell me, what I keep on telling him:"your love is what I live on".
    Rest in Peace, my brave Batman, take care of your weggies from heaven, and get a place ready for me, next to you, until we meet again.

  6. #24
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    25
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Love the Sinu-pulse. Neti is in garbage. Thanks for the heads up on diluting Alkolol. Saw ENT last week and he is on top of everything. Biopsies, cultures, ears, trachea. The last antibiotic was very strong, knocked my socks off. But I got thru two weeks without dangerous side effects. He said if it hits again, he will immediately try one more. After that, a scraping surgery. Let’s hope between the irrigation and four more Rituxan infusions to start next week will keep the sinus infections at bay. Rheumatologist said I have had this for years. How many other people are walking around thinking they just have bad forever colds? Miracle I got through college, worked and raised family. Retirement makes it easier to deal with Wegeners. Tomorrow will be another major molar extraction. Anyone else experience teeth problems? Could Prednisone cause problems with teeth? I know Methotrexate did.
    Thank y’all for your help and guidance. This site is such a big help.
    Masha

  7. Likes annekat, drz, Alysia liked this post
  8. #25
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,761
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by Masha View Post
    Love the Sinu-pulse. Neti is in garbage. Thanks for the heads up on diluting Alkolol. Saw ENT last week and he is on top of everything. Biopsies, cultures, ears, trachea. The last antibiotic was very strong, knocked my socks off. But I got thru two weeks without dangerous side effects. He said if it hits again, he will immediately try one more. After that, a scraping surgery. Letís hope between the irrigation and four more Rituxan infusions to start next week will keep the sinus infections at bay. Rheumatologist said I have had this for years. How many other people are walking around thinking they just have bad forever colds? Miracle I got through college, worked and raised family. Retirement makes it easier to deal with Wegeners. Tomorrow will be another major molar extraction. Anyone else experience teeth problems? Could Prednisone cause problems with teeth? I know Methotrexate did.
    Thank yíall for your help and guidance. This site is such a big help.
    Masha
    I went around for 2.5 years thinking I had recurrent sinus and ear infections and severe allergies. I do have allergies, I'll give them that, but not all that severe. The giant ear infection at the beginning should have been a clue, as I'd never been prone to ear infections at all, and I've heard the same from others. My delayed dx was not as long as some and probably yours. But it was long enough to develop a saddle nose, even though I was doing the nasal rinses. If Wegs hadn't eventually gone into my lungs, who knows how much longer they'd have taken to figure it out, except that the saddle nose happened right about then and was sort if a dead giveaway.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 03-21-2018 at 01:40 PM.
    Anne, dx'ed April 2011

  9. Likes Alysia liked this post
  10. #26
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,761
    Post Thanks / Like
    Mentioned
    5 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by annekat View Post
    I went around for 2.5 years thinking I had recurrent sinus and ear infections and severe allergies. I do have allergies, I'll give the that, but not all that severe. The giant ear infection at the beginning should have been a clue, as I'd never been prone to ear infections at all, and I've heard the same from others. My delayed dx was not as long as some and probably yours. But it was long enough to develop a saddle nose, even though I was doing the nasal rinses. If Wegs hadn't eventually gone into my lungs, who knows how much longer they'd have taken to figure it out, except that the saddle nose happened right about then and was sort if a dead giveaway.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    As for teeth problems, I had some but not as bad as some other people.. Molar extractions happened when I was on medium dose pred and Cytoxan. Now on Methotrexate. Dentist says there are some issues but nothing is falling out or painful, yet. They say dry mouth contributes to dental problems and our meds can contribute to that. Someone suggested ACT mouth rinse for dry mouth, and I got some.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 03-21-2018 at 01:42 PM.
    Anne, dx'ed April 2011

  11. Likes Alysia liked this post
  12. #27
    Join Date
    Jul 2010
    Location
    see map location
    Posts
    4,026
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Dental issues

    I have had lots of dental work recently due to Wegs, diabetes, and the meds and dry mouth. I have had some crowns, root canals, infectons etc. Once I went to dentist thinking I had an infection and it turned out to be a sinus infection which he correctly diagnosed and treated. I was skeptical but he was right. Having a good dentist is important for us Weggies.
    Knowledge is power! Wisdom is using it to make good decisions!

  13. Likes Pete, Alysia liked this post
  14. #28
    Join Date
    Jul 2014
    Location
    Anchorage, Alaska
    Posts
    271
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    It's not just meds - - for me it's the chronic congestion that often causes me to have to breathe through my mouth at night. That is not a restful way to sleep, and yes the resulting dry mouth is concerning for dental health.

  15. #29
    Join Date
    Sep 2013
    Location
    Northern Illinois, USA
    Posts
    788
    Post Thanks / Like
    Mentioned
    3 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Changing irrigation tools?

    Quote Originally Posted by Alaskatom View Post
    It's not just meds - - for me it's the chronic congestion that often causes me to have to breathe through my mouth at night. That is not a restful way to sleep, and yes the resulting dry mouth is concerning for dental health.
    We just need to move you somewhere WARMER and MORE HUMID Tom!!! LOL!!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


  16. Likes Alysia liked this post
Page 3 of 3 FirstFirst 123

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
  •