No meds after RTX

[kaysee]

I had two rounds of RTX in June/July and again in October. I am tapering pred and am down to 5 mg every three days. I will soon be off it entirely. My labs are looking good to me but I don't see the Dr again until April. The Dr has prescribed no other drug for me. I am worried about relapse with nothing for maintenance. Is anyone else on nothing but rituxan for maintenance? I am wondering how well that works.

[Debbie C]

Hi Karen, I am only on 5 mg pred for the last 4 years. I had 1 rtx infusion and didn't go well and I can't tolerate any other drugs so I just have to hope this keeps it at bay.

[LisaMac]

I rely soley on Rtx for maintenance. After years on Pred I developed Acute Avascular Necrosis in my hips. My Rheum apologized for it but I still had to have 2 total hip replacements. A round of Rtx, about 15 months apart, after each surgery, has kept me sailing along. Till about a month ago. We don't know if this flare is from the most recent surgery, but assume it is. Other than Ctx nothing seems to work for me when I'm well into a flare. I was pretty scared to go without any drugs at first, but as long as I eat well and stay positive I'd prefer to stay off Pred. This is not for everyone, please don't taper because it worked for me. I feel VERY fortunate that it works for me. I really hope everyone can find the right cocktail of meds to live a symptom free, and happy life.

[MaxD]

Karen,

I had 4 infusions of RTX in April/May, and tapered the prednisone down to zero by Christmas. My docs have recommended RTX for maintenance - one infusion approximately every six months for the first two years. My last blood count showed 0% peripheral B-cell rate, so although it's been over 6 months they're holding off on the infusion until it nudges up a little. I don't expect to be on any other medication besides RTX. I see my doc every two months now instead of every month.

Am I nervous? You bet I am. As I said in another post, it's like when the training wheels come off the bike except this time it feels like they're also removing the handle bars. But each good day brings more confidence.

Good luck to you. Stay strong!

Oh, btw RTX stays in the body for several months, so if that makes you feel better .... :-)

[mrtmeo]

From what I have read and heard from drs is that B-cells can start to come back anywhere from 6 months to 18 months.
This is the usual time for relapses, but some people relapse even earlier, so it is important to get things checked regularly.
Dipping your urine with Hemostix can help alert you if the kidneys are flaring.

[JeanMarie]

I finished 4 rounds of RTX the beginning of July 2014. Currently I'm on 5 mg pred & Bactrim 3X a week. I started immuran a few months ago, but had a few infections so we decided to go off it. I'm watched pretty carefully, visit the docs & blood work every 1 or 2 months. When my last flare started I was down to 4 mg pred & had stopped Bactrim right before the flare. I blamed stopping the Bactrim for the flare, but of course there's no way to prove it. Before that, I was in remission for almost 3 yrs. Besides wegs, I also have chronic lymphocytic leukemia (never treated, on watch & wait). People with CLL frequently die of infections & I think that's true of wegs as well. For me having 2 bad infections in a short period of time was a real concern. So for now at least I am going with just the pred & Bactrim & so far so good! Hope this helps!

[Barry Forshaw]

Alicia finished her maintenance doses of Rituximab about 4 years ago, and since then the only drug she has been taking is Omeprazole, because her stomach was affected by all the drugs she took early on. She also has a throat dilatation operation twice per year to deal with her tracheal stenosis, but there are no drugs to take in relation to this. Alicia couldn't wait to stop taking the steroids. She was reassured by the regular checkups to monitor her ANCA levels, her eyesight, etc. Good luck!

[kaysee]

Thanks guys and gals. I feel a little more comfortable now. I will see the dr right at the 6 month mark from last RTX infusion. I will ask about bllod work to check B-cells then. I should be off the pred entirely by then. He did give me a prescrip for Arava last time to help with inflammation for osteoarthritis which I have, but I am not seeing a difference in the pain level, I so anxious about a relapse when I am on nothing for maintenance. I have some of the test strips for checking for blood in urine, I will step uo the use of those.

[brew22]

Who is your Doc?

[mrtmeo]

Thanks guys and gals. I feel a little more comfortable now. I will see the dr right at the 6 month mark from last RTX infusion. I will ask about bllod work to check B-cells then. I should be off the pred entirely by then. He did give me a prescrip for Arava last time to help with inflammation for osteoarthritis which I have, but I am not seeing a difference in the pain level, I so anxious about a relapse when I am on nothing for maintenance. I have some of the test strips for checking for blood in urine, I will step uo the use of those.

Hi Karen,
I wouldn't wait for 6 months to get blood work and urinalysis.
From what others have done, getting checked every 3 months is crucial to detecting disease activity early, especially in the kidneys.
It is also, crucial when not using maintenance meds after rtx treatments.
Doing tests early can provide quicker treatment when needed to stop progression of weg's.

[brew22]

To Max D. Who is your Doctor ? I had one doc want to follow your plan and the other want the imuran and 5mg predict which is what I am doing now thanks for the info

[LisaMac]

Yeah, I agree. Most of us get our labs done every month or so. Things can go bad so fast with this disease.

[kaysee]

I do get blood work and urinalysis for the kidney dr every two to three months. My rhuemy does not order blood work as often as I see him but he is getting all the blood tests that the kidney dr orders as well, either from the kidney dr or from me.

[MaxD]

To Max D. Who is your Doctor ? I had one doc want to follow your plan and the other want the imuran and 5mg predict which is what I am doing now thanks for the info


Dr Robert Spiera in NYC. Apologies for replying late, I was traveling the last 3 weeks.

[drz]

Dr Robert Spiera in NYC. Apologies for replying late, I was traveling the last 3 weeks.

Who is highly regarded for his Wegs expertise and should be an excellent choice if you can see him. Best wishes.