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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...

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...

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...

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?

Thanks Pete- hope all is well with you and yours.

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...

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...

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...

thanks Loisann - will be having C19/20 done next month.

Thanks Alysia - after week and half in hospital going home today!

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...

Has anyone heard of or had experience with lung toxicity due to Rituxin?

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...

Thanks drz. $60,000 up front - crazy

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

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...

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...

Dividing the dose of MTX was helpful to reduce fatigue - good advice

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

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

Thanks!

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...

Sounds great Gab - hoping to make it this time!!

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

Hope you get answers from your docs Alyssa.

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...

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