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Type: Posts; User: Middlesista

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    Re: Diagnosed December 2018

    Hello Ken - Sounds like you are on the right road - being correctly diagnosed and starting treatment is vital. A lot of good advice here. I also keep a journal of my symptoms and find it helpful to...
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    Re: Newly dx 11/28/18 and scared!

    Hi Matt - the folks here and on the various disease related face book pages have been wonderfully helpful and supportive as you have learned. Was there a reason your medical team went with cytoxan...
  3. Re: Rituxin - C19 and C20 and length of B cell suppresion

    I have read where folks say the manufacturer has some sort of program to help folks with payment of the Rituxin

    Well I certainly hope you don’t flare! At one point my insurance wanted me to...
  4. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Woz. I thought it was odd that when my PR 3 went up the second time the ANCA was negative - did that happen to you or was your ANCA positive also? Have you ever had to use Rituxin?
  5. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Thanks Pete- hope all is well with you and yours.
  6. Re: Rituxin - C19 and C20 and length of B cell suppresion

    As I mentioned earlier in this thread I was of the “less is best” mind set and did not want the every 6 month infusion so we tried MTX however last year ended up with new lung lesion and had to go...
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    Re: Rituxin Question

    Thank you Alysia - your insight is very helpful. You have also dealt with so much - both physically and emotionally. You are truly a very kind and giving person with all the help and support you send...
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    Rituxin Question

    Just a bit of background - Completed my 4th infusion on July 9th, this was my second round of Rituxnin the first being in 2015 which “quieted” things down for over 2 years. About month and a half...
  9. Re: Rituxin - C19 and C20 and length of B cell suppresion

    thanks Loisann - will be having C19/20 done next month.
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    Re: Rituxin and lung toxicity

    Thanks Alysia - after week and half in hospital going home today!
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    Re: Rituxin and lung toxicity

    Hi Alysia - Rituximab-induced interstitial lung disease is a “rare” adverse effect after having rituxin - it is in the literature and presents as a form of pneumonitis.

    I completed my 4th...
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    Rituxin and lung toxicity

    Has anyone heard of or had experience with lung toxicity due to Rituxin?
  13. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Just revisiting this thread as I found myself requiring another go at Rituxin. I had initial doses in Winter of 2015 when I was diagnosed and was put on MTX for maintenance along with varying doses...
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    Re: Medicare - Insurance Coverage

    Thanks drz. $60,000 up front - crazy
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    Re: Medicare - Insurance Coverage

    Right - the supplement is important. One of our case managers suggested blue cross and another spoke about Part D. Thanks for your insight on this vdub
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    Medicare - Insurance Coverage

    For folks in Massachusetts - what are your experiences with Medicare and all the various parts and supplements in our state? is It possible that the meds are covered including rituxin and which...
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    Re: All I want for Christmas is a new knee

    Mike - sorry about the delay in your surgery, it can be frustrating

    my husband had a knee replacement what he failed to do n the post op period was perform the excercises as instructed. Ended up...
  18. Dividing the dose of MTX was helpful to reduce...

    Dividing the dose of MTX was helpful to reduce fatigue - good advice
  19. Thread: Flonase

    by Middlesista
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    Thanks everyone for your input - I did end up...

    Thanks everyone for your input - I did end up starting it with no negative issues that s far.
  20. Thread: Flonase

    by Middlesista
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    Flonase

    Does anyone use Flonase while on low dose prednisone and MTX?

    Thanks!
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    Jaha - sorry to learn about your recent issues,...

    Jaha - sorry to learn about your recent issues, seems with this disease of it is not one thing it is another. We just have to have to keep on keeping on, stay vigilant and in touch with our medical...
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    Sounds great Gab - hoping to make it this time!!

    Sounds great Gab - hoping to make it this time!!
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    It it was an MRI that was able to isolate the...

    It it was an MRI that was able to isolate the optic nerve.

    Hope you get answers from your docs Alyssa.
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    Hi Alysia - my vision issues are r/t GPA affect g...

    Hi Alysia - my vision issues are r/t GPA affect g my optic nerve. MRI made the diagnosis along with blood tests. Residual damage still affects vision. Saw a neuro-optholmologist. The prednisone...
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    Have not had B cell count checked for awhile - I...

    Have not had B cell count checked for awhile - I think last checked in the summer and they were at O% and that was about 8 months since initial infusion
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