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  1. Replies
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    I have found through this journey I was really...

    I have found through this journey I was really bad in the beginning. I would say most of us go up and down with wegs. I am hoping the MTX injections continue to keep me steady, however I also know...
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    I am doing very well on these drugs now. I am...

    I am doing very well on these drugs now. I am getting a CPAP machine as my ENT said that I have a lot of scaring and this will help me sleep deeper. I had a bad spell for a year and one half,...
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    Aneinu, I also see Dr. Villa-forte, but now 10...

    Aneinu,

    I also see Dr. Villa-forte, but now 10 years into wegs. I am sure different people need different drugs and RTX was not an option for me. I am able at this point to be controlled by the...
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    Anne, I tried the Rituxan infusion 2 years...

    Anne,

    I tried the Rituxan infusion 2 years ago and reacted asap to it so they had to stop. I now go to the Cleveland Clinic and a Dr. Alpher that I use when I am in Naples during the winter. ...
  5. Thread: Flonase

    by jakekell
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    Good morning, I am using Flonase while on low...

    Good morning,

    I am using Flonase while on low dose prednisone and MTX. I have been using this for 3 years with no issues.
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    Thanks much Andy sounds like you have been...

    Thanks much Andy sounds like you have been through a lot, mine only has been about 8 weeks. I just got an e-mail on my last test, which are all coming back in the normal range. I am feeling better,...
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    Hi Andy, I have had wegs dx about 8 years ago,...

    Hi Andy,

    I have had wegs dx about 8 years ago, but docs think I have had it much longer. I was dx with the nasal biopsy also, mine was like Anne's. I have just been told I have pancreatitis. I...
  8. Bloom, I start getting hives at pred less than...

    Bloom,

    I start getting hives at pred less than 2, hives have been a large part of my wegs. I think I maybe stuck with the 2mg of pred.
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    Fatigue is also my issues, has been from the...

    Fatigue is also my issues, has been from the onset of wegs about 9 years ago. I am finally losing some of the pred weight I gained, helps some. I think it is just part of it and very tough for...
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    Chris, My deepest sympathy to you and all of...

    Chris,

    My deepest sympathy to you and all of your family. May you all have peace that your Mom is no longer suffering.

    Mary
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    I hope they get things under control soon. I...

    I hope they get things under control soon. I really liked Dr. Greene he is on top of everything that was going on with my sinus, breathing, ears, etc. He told my husband and I at the first visit...
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    Dr. Alper, Jeffrey 239-262-6550 Dr. Alper and...

    Dr. Alper, Jeffrey
    239-262-6550

    Dr. Alper and Greene are with the NCH Hospital group so the information exchanges very well.

    Good luck hope things get better soon,

    Mary
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    I maybe just got lucky with my ENT, happens...

    I maybe just got lucky with my ENT, happens sometimes. :hug3:
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    I haven't had a problem with my docs providing...

    I haven't had a problem with my docs providing the info to each other, guess I am lucky. My ENT in Naples dictates a letter to CC while I sit there, provides me with a copy before I leave works well.
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    I agree with the advice of getting a good Wegs...

    I agree with the advice of getting a good Wegs doc. I don't know if they have Rhemy's in the Tampa, but there is suppose to be a good one in Naples. I will find out/put his name here for you if you...
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    Chris, I am so sorry to hear things aren't...

    Chris,

    I am so sorry to hear things aren't going better. Hugs and prayers going out to you both.

    Mary
  17. Savedbygrace I also had a bad reaction to...

    Savedbygrace

    I also had a bad reaction to Rituximab, however the nurses stopped it quickly. They stopped mine after 23 minutes as I was starting to itch in my throat/ears. The nurse pumped me...
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    Randy, The drive is so worth while after what...

    Randy,

    The drive is so worth while after what the Rhemy that doesn't know about wegs put me threw. I love Villa-Forte she is so good. I think she is a little slow to respond, however that really...
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    I also see Dr. Villa-Forte at CC. I drive from...

    I also see Dr. Villa-Forte at CC. I drive from Michigan as I found out the hard was that I had to go to the best docs for WEGS. Good luck, hope they caught it early and you do well.
    Mary
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    I am glad this was posted as I was not aware of...

    I am glad this was posted as I was not aware of some of the issues with some of the herbs.
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    Chris.wg, I am so sorry that this situation is...

    Chris.wg,

    I am so sorry that this situation is so bad. I did this with my mom, however she was 93 so was very different with your mom being so young. I am in the Kalamazoo area so I know what a...
  22. Hi Pete, Glad to hear your check up was good...

    Hi Pete,

    Glad to hear your check up was good with Dr. Villa-Forte. I see her May 11th, we are going to drive to Cleveland on our way home from FL as been over 6 months. I am down to 2 mgs and...
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    My Family (both side) were Scottish and my dad's...

    My Family (both side) were Scottish and my dad's side were Vikings that landed in Scotland way, way back. I am 2nd generation in the US.
  24. I have also heard that and as with you I was the...

    I have also heard that and as with you I was the one in the family with the allergy issues.
  25. Replies
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    The involvement does different greatly and...

    The involvement does different greatly and unpredictable is the perfect word for this disease for sure. The damage going on in the inside of us goes back to many discussions of being invisible. One...
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