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    Possible flare?

    I was diagnosed in 2013, have been off all meds since 2018. Just had routine labs done and my sed rate came back high (this has been a good indicator of my disease status in the past) and my C-ANCA...
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    I understand and appreciate your input. We have...

    I understand and appreciate your input. We have consistently drawn monthly CRP and ESR/sed to focus more on a trend versus a specific result. Typically after a Rituxan infusion my sed rate drops for...
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    I have had it done at at Cleveland clinic and it...

    I have had it done at at Cleveland clinic and it was high then. My CRP is normal and has been for quite awhile.
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    Yes my sed rate is high (should be

    Yes my sed rate is high (should be <20). My sed rate has not been normal since pre-dx and my pred has been as high as 60.
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    Aza and Rituxan.

    Anybody taking both of these meds? I have been on aza for almost 3 years and have done 4 rounds of Rituxan. I am down to 2.5 mg pred. Fatigue is my main symptom. Labs have stabilized. Sed rate...
  6. Thread: Foot Pain

    by Ruotsi1
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    I had debilitating foot pain, could barely walk,...

    I had debilitating foot pain, could barely walk, prior to starting treatment for Wg's
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    My SED rate has been consistently up from dx (as...

    My SED rate has been consistently up from dx (as high as 148 at dx, now runs mid-50's). Yes SED rate is a non specific marker of inflammation but has been shown in my case to show when I'm starting...
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    Not sure about the Spirulina or Chlporella, but I...

    Not sure about the Spirulina or Chlporella, but I take turmeric daily. I have had chronic left hip pain since diagnosis and the turmeric helps me GREATLY!!
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    Jason and Pete I have a high deductible and take...

    Jason and Pete I have a high deductible and take advantage of the Genentech copay too. I was told to stop the aza when I start the Rituxan infusions, hoping yo be able to stay off of it.
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    RTX only for maintenance?

    I had a RTX infusion in Sept. '14 and a 2nd infusion two weeks later. My kidney function has improved, my lung nodules have shrunk, but my SED rate remains ~55. Both Dr. villa-Forte and my local...
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    Thanks Pete, I feel very fortunate as well to...

    Thanks Pete, I feel very fortunate as well to have been able to travel and see her., sure wish she was in,y 2 hrs from me. I have been the one passing on communication to my local rheumy and that has...
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    Dr. Villa-Forte

    Little background: dx'd July 2013, 6 mo of cyclo, pred from 60 down to 10, and back up again, currently at 6; Rituxan in sept/October 2014 (2 doses/ 2 wks apart ). Saw dr. Villa forte for the first...
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    My biggest struggle is fatigue, but if I pace...

    My biggest struggle is fatigue, but if I pace myself I do well. I have a 4 and 6 yr old, and they too, are my biggest concern. They know as little as possible about my disease, but are frequently...
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    Vitamin C is a water soluble vitamin, our body...

    Vitamin C is a water soluble vitamin, our body does not store it, and any excess we excrete out. Better to get vitamin c from fresh fruits and veggies.
  15. 1st infusion for me was on sept. 18, second on...

    1st infusion for me was on sept. 18, second on Oct 2nd. No side effects, but tired for a few days. Nodule in lung has reduced in size.
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    If I am understanding correctly there are two...

    If I am understanding correctly there are two different studies of RTX dose. One supports 2 doses and the other 4 doses. My cleveland doc(Villa-Forte) recommended 2 doses, and my rheumy here at home...
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    I was told by my Pulmonologist and Nephrologist...

    I was told by my Pulmonologist and Nephrologist that MTX wasn't a good option for me because of my lung involvement. I did ctx for 6 months and just finished 2 rounds of RTX.
  18. What would the purpose of the fecal transplant...

    What would the purpose of the fecal transplant be? I have heard of this procedure for Crohn's and c-diff colitis, but curious how it would benefit Wegs. What would you hope would come from this? ...
  19. Thread: Ear clogged

    by Ruotsi1
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    I have had ear issues (clogging, infections,...

    I have had ear issues (clogging, infections, pain, RTX) since prior to dx. My ENT to this day denies my ear issues have anything to do with Wegs...very annoying, because I know my ears/sinuses were...
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    My dentist said the same about the Crest...

    My dentist said the same about the Crest ProHealth. I was using the mouthwash when I noticed staining on my teeth. The problem is that I had been using the mouthwash for about 1 year before the...
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    I just had 2 Rituxan infusions and now am on...

    I just had 2 Rituxan infusions and now am on Imuran for maintenance. No change in kidney function (creatinine has been hanging out at 1.5).
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    I have elevated blood pressure (on meds) and my...

    I have elevated blood pressure (on meds) and my resting heart rate is 100-110. Docs seem to think both are related to Weg's disease process and meds (specifically prednisone, I am currently on 20mg,...
  23. Thread: Eye tearing

    by Ruotsi1
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    I have had problems with eye tearing for about a...

    I have had problems with eye tearing for about a year, started about 2 months after diagnosis. I thought it was related to prednisone. Eye doc says eyes look great, rheumy says no clue what would...
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    I just had my first Rituxan infusion last week...

    I just had my first Rituxan infusion last week and they gave me 120mg solumedrol, Tylenol, and Benadryl prior to my infusion per MD at Cleveland Clinic.
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    Starting rituximab next week

    Hi all,

    I am getting ready to start rituximab next week. I am wondering what to expect (though I know everybody can be different.). Per Cleveland Clinic recommendations I am doing two infusions of...
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