RTX # 4, done. Then what?

[KimH]

I had my last of 4 weekly RTX on Friday and I tolerated it well. I see my rheumatologist on Wednesday. I am on ten mg of pred and that's it. According to the research put out by the vasculitis docs after the treatment of four weeks the patient is weaned off the prednisone while being monitored and evaluated by the BVAS/WG. I was wondering for those of you who have had similar RTX what protocol you have been following post treatment.

[Alysia]

Hi Kiim,
I am glad you have done with the RTX.
I am on rtx every 6 month. and now on mtx 7.5 mg a week and pred 5 mg a day.
I hope you can wean off pred. I couldn't.

[KimH]

Thanks Alysia. I am nervous about the prednisone. I have been on it since August 2011 . That is a long vacation for my adrenal glands. My labs look good, not yet perfectly. SED 31, CPR, 1.45, creatinine good, lung nodule - gone, Dr Lebovics said sinuses have some scabs and mild inflammation. All is good.

[marylz]

Good to hear you tolerated RTX well. After my 6 monthly infusions CTX, followed by 1 infusion 3 months later, I had a flare and had another CTX infusion at 2 months. My docs then decided we would switch it up and give me RTX. So I start RTX the last week of Feb for 4 infusions and then again after 6 months. I read almost all the posts about RTX these last few days and am feeling pretty good about the switch. Good luck to you KimH!

[KimH]

Thanks Mary. I hope the RTX works for you without any side effects. I had been on MTX 25mg/week along with pred and while o that I developed tumors in my left sinus along with bone deterioration. That was when I got my new nose. Shortly after surgery I started on 100mg oral CTX and I was at 60mg of prednisone. I was on the CTX for about 8 months, longer than my rheumatologist had wanted but I was due to have insurance in January and planned to start the RTX. Now that is done and I am wondering what is next. Dr.Lebovics gave me the impression that I should wean off the prednisone for about a year. I think my rheumatologist would like to do some more RTX at some point. I posted my question to get an idea of what kinds of maintenance protocol other people receive following their RTX therapy. I see my rheumatologist tomorrow and I hope that he has a good plan. Dr Lebovics said that I may need to get a consult with Dr Spiera. I know that patience is a key with the disease but it sure is hard to wait. Thank you to all for your input.

[Pete]

Hi Kim,

I had two infusions of rtx in October 2013. since then, my maintenance meds are 20 mg/wk of mtx, weaning off pred (down to 10 mg/day now), bactrim DS on MWF, 1 mg/day folic acid. So far, so good.

[Alysia]

. So I start RTX the last week of Feb for 4 infusions and then again after 6 months. I read almost all the posts about RTX these last few days and am feeling pretty good about the switch.

Hi Mary,
good luck with your rtx. ask whatever you want about it. we are already rtx-veterans here and will be glad to answer you. you must be excited to get it. :hug1:

[carriej22]

I only ever had the one round of infusions in 2012, I have had a few minor flares that we have kept under control with imuran and I also take bactrim.. Slow wean off pred. I have really not wanted to get more RTX because it would get in the way of work and I can't really afford to take more time off. However I think I have done reasonably well with this method.

[KimH]

Thank you, Carrie.

[drz]

I only ever had the one round of infusions in 2012, I have had a few minor flares that we have kept under control with imuran and I also take bactrim.. Slow wean off pred. I have really not wanted to get more RTX because it would get in the way of work and I can't really afford to take more time off. However I think I have done reasonably well with this method.

I have had a similar treatment program. Initial RTX then CTX for several months and then switch to generic Imuran (azathioprine) which has generally contained the Wegs well enough with some mild increases in dosage at times plus some temporary increases in prednisone but most of the time I have remained on the same maintenance dosage of AZA and 5 mg pred for past two years. My doctors are saving RTX for a bad flare that means the AZA can't manage the Wegs anymore.

[KimH]

I saw my rheumatologist and he is on the same page as Dr. Lebovics. I am to stay at 10 mg of pred. Then in a month I get labs and a sinus CT. If all is good I can slowly go down on the prednisone. I get blood work monthly. See my rheumatologist in April and Dr Lebovics in May. I hope my body is ready. Depending on the labs and how I feel there is a chance of one RTX is 6 months but I am getting way ahead of myself.

[Deborah T]

Hi Kim - Following my last dose of RTX, my Rheum put me on Mepron, 2 teaspoons / day x 1 month, then 2 teaspoons a day 3 d/wk (for life). "This medication (http://www.webmd.com/drugs/index-drugs.aspx) is used to prevent or treat Pneumocystis jiroveci pneumonia (http://www.webmd.com/lung/tc/pneumonia-topic-overview)(previously known as Pneumocystis carinii pneumonia or PCP) in selected patients. It is an antiparasitic that prevents the growth of the germ responsible for this infection" (from WEB MD). I have an extensive pulm. history. She is tapering down my Prednisone, slowly. Will go back on MTX only if needed (labs will be deciding factor for that).
Congrats on completing your RTX. Prayers your way.
Deborah T.