Rituximab

**Pete** · 07-15-2015, 11:58 PM

Originally Posted by Miska

Thank you for this post. I am going to do Rtx infusions soon. (I had a second opinion at the Cleveland Clinic). You answered a lot of my questions! I know there are probably thousand ways to give it but is 1 infusions/ every week for 4 weeks common?

I also see a rheumy at Cleveland Clinic (Dr Villa Forte) for GPA/Wegs. About 18 months ago, she rx'd 2 infusions of rtx two weeks apart. These were nonevents as far as side effects were concerned. Now, I'm getting set up for 4 weekly infusions this month. I will also be coming off mtx as I begin these treatments and will stay off it. I stayed on 15-20 mg of mtx/week during my first treatments.

I get my rtx at Ohio State under the supervision of a nephrologist who was on the team who dx'd me. Saves the time and expense of driving 2+ hours one-way to Cleveland for treatment.

**LCL2013** · 07-16-2015, 01:32 AM

I had my quarterly appointment with Dr. Villa Forte at the Cleveland Clinic on Friday the 10th. I've been on Cellcept (2 tabs twice/day) since March and was down to 10mg prednisone and feeling really good, until I caught some sort of virus last Wednesday that really put me down for the day.

Anyway, Dr. Villa Forte doesn't believe I'm in remission because of the look of my cells when she ran a urinalysis. My sed rate is about 56, but my previous doctor was never able to get it in the normal range. So, Dr. Villa Forte wants me to start the Rituximab infusions. I'll do them here at a local Rheumy's office so that I don't have to make the 3 1/2 hour (each way) drive to Cleveland. She also took me back up to 20 mg prednisone. Boooo! I had stopped taking the Cellcept when I got sick last week (at the advice of my personal doctor) in order to give my body the chance to fight off the virus. Dr. Villa Forte also instructed me to discontinue the Cellcept entirely as I wait for word on scheduling the Rituximab infusion.

I feel so crappy right now with this cold - at least I hope my symptoms are just a cold and not my Wegs flaring in my sinuses. :-/ I'm a little nervous about the infusions, but also excited about the possibility of remission and finally going off Pred after 2 years - been as high as 80mg (initial start of treatment) and down as low as 5mg (very briefly last fall before I came down with bronchitis).

**Pete** · 07-16-2015, 02:47 AM

Originally Posted by LCL2013

I feel so crappy right now with this cold - at least I hope my symptoms are just a cold and not my Wegs flaring in my sinuses. :-/ I'm a little nervous about the infusions, but also excited about the possibility of remission and finally going off Pred after 2 years - been as high as 80mg (initial start of treatment) and down as low as 5mg (very briefly last fall before I came down with bronchitis).

I've had a cold recently as well - got it from my two year-old granddaughter. I took Zicam for about four days and got to feeling better. Still have a lingering, loose cough that is occasionally productive. I'm on mtx until my rtx infusions are scheduled, then off. I had tapered down to 2 mg of pred when I started having joint pain and more fatigue. Went back up to 5 mg pred and felt better. Then, I e-mailed Dr Villa Forte about it. She was OK with the 5 mg pred and instructed me to get rtx.

**LCL2013** · 07-18-2015, 04:19 AM

Pete,

Sorry to hear you've been suffering through a cold as well. Being around small children (my daughter is 7) is tricky. This time though I actually got my cold from my sister-in-law.

Dr. Villa Forte (who happens to be in Brazil right now until 4 August taking a well-deserved vacation, I hope) told me to stay off the Cellcept in anticipation of me QUICKLY proceeding to RTX infusion. To accommodate my desire to have the infusions done locally she said she would send my local Rheumy a letter to proceed with said infusion therapy. 6 days pass and I hear nothing so I call CC and learn that the letter did not get sent. Dr. sends it from Brazil (you rock Dr. V-F). I call the local Rheumy and am told it has been 2 1/2 years since I've been there so I will need to make an appt with the doc before we can proceed with anything. Okay, that's fine. "When can I see the doc?" First available appointment is 26 August. "But...that's over a month from now!" Sorry that's the soonest we can get you in. OMG!

I check my insurance for the name of another local Rheumy who is in-network. I call - she has experience with WG and they perform infusions. They will need a referral from my family physician. "Okay, no problem. What would be the earliest appt available?" Next week. "Awesome!" I'm now trying to confirm that my Fam Physician sent the referral so I can schedule my appt and notify Dr. V-F's office to send them the letter. I'll still have to wait while they send the pre-auth through my insurance for the infusion, which could take a couple of weeks. Really nervous about only being on 20mg of Pred to control the WGs for potentially another 3 weeks or more.

**Pete** · 07-18-2015, 04:29 AM

LCL2013,

Dr VF indeed rocks. She probably sent my treatment instructions to Dr Bhatt at OSU just before she left. I've always gotten prompt responses from her.

I spent last week working thru OSU Nephrology before I stumbled across Dr Bhatt's number. I called Monday morning and saw him early Monday afternoon. The infusion center has the order. Just waiting for insurance to approve $80k worth of rtx...

**LCL2013** · 07-18-2015, 05:22 AM

Pete,

That's great that everything moved along so quickly. My insurance already approved my infusion, but that was back in March or April, and it to have the infusion performed at the CC. So, useless to me when I'm going to have it done elsewhere. I'm hoping that the fact that they've approved it once already will help speed things along. <fingers crossed>

**kaysee** · 07-18-2015, 05:31 AM

LCL, better check with your insurance company to make sure the treatments are still approved. When I had my infusions the insurance company set a window of time by which it had to be done. My Dr office had to work within that window of time to make sure that all four of my weekly infusions could be scheduled. Just because it was approved back in March or April, may mot mean it is still approved. Just as a precaution I would check with them.

**LCL2013** · 07-24-2015, 04:40 AM

Well, it looks like my Rtx infusions are a go! My first one is schedule for next Friday, 31 July and I will finish on Wednesday 19 August. I'm nervous, excited, a little impatient to get started. I'm right at 2 weeks of nothing but 20mg prednisone and getting a little anxious, even though I still feel pretty good. Starting to develop some swelling in both knees, both ankles, and two toes of my right foot, but nothing painful.

The insurance came through like a charm. I had to call the specialty pharmacy to have the previous Pre-Auth with Cleveland Clinic cancelled and the local Rheumy quickly received the authorization for the treatment starting 29 July, but it has to be completed within 5 weeks. Thankfully, the Rheumy was able to get me scheduled very quickly as well.

The scheduling nurse commented that my dosage will be 500 (mg?) versus the more common 1,000 (mg?). Can others tell me what their dosage was and if they were given a reason for said dosage?

Thanks!
Linda