pred taper stalled :-(

[Chris G]

So disappointed!!! I'm 7 weeks post rtx (if you count from the 1st infusion - 2 round course of rtx). When I began the infusions, my pred dose was at 20. I was tapering by 2.5mg, every 2 weeks since June 7. Everything was fine until about day 10 @ 15mg...... I began to develop a cough. The cough has worsened, and my voice is now affected as well. No shortness of breath to speak of. I alerted my rheumy, and told her that I didn't think continuing with the taper (to 12.5mg) was a good idea at this time. She agreed, so I've been holding at 15mg - thinking that the rtx would kick in and catch up with the program! However, today I felt worse & a bit lightheaded. Of course, it's a holiday weekend - not gonna waste my time calling the on call doc. I said I wasn't gonna do it, but I decided to boost my pred back to 17.5 for a couple of days to get some relief. I'm not in respiratory distress or anything like that, just feeling like crap! And SO disappointed. Once again..........I had a plan......could see light at the end of the tunnel.... now I'm derailed again.

Has anyone else had this type of setback post rtx? I know the peak effectiveness isn't realized until 8-10 weeks after rtx.........is that 8-10 after the FIRST infusion or the LAST infusion??

[pberggren1]

I think it is more like 5 or 6 weeks after the first infusion. I have had setbacks like this several times over the years. But this is my first time using rtx. I will have my 4th infusion on Thursday.

[Sangye]

Oh Chris, I am so sorry. But don't get too worried. Like you said, the rtx is still just kicking in. I believe it's measured from the first dose but I'm not 100% sure.

When is the last time you did labs?

[Chris G]

It's been a while since I had labs other than my regular monthly liver/kidney panel......maybe 3 months. I don't go back to rheumy until September. I'll check back in with them next week, and ask about doing some labs. My ANCA is about the only reliable indicator I have. Perhaps I should ask for a b-cell test too???

I hope this isn't an indicator that the rtx isn't going to work for me. I hadn't even CONSIDERED that it might not work. I'd be devastated. The weird thing is that I was at 15 mg for about 10 days before the wheels fell off! I felt fine, and I was really encouraged, because I hadn't been able to get below 20mg, prior to the rtx.

[Sangye]

The rtx takes time to work. It might just be a matter of letting that happen before you continue tapering. Don't lose hope!

[Chris G]

Thanks guys. I'm trying not to get too discouraged. I had to resort to shopping therapy today.

[pberggren1]

Shopping therapy? What does this all entail?

[Sangye]

Shopping.

[pberggren1]

I will have to try that sometime. But first I will have to knock over a Brinks truck so I would have some cash to do that.

[pwc51]

:Has anyone else had this type of setback post rtx? I know the peak effectiveness isn't realized until 8-10 weeks after rtx.........is that 8-10 after the FIRST infusion or the LAST infusion??

Once I had good blood readings post rtx (about 3 / 4 weeks in my case) my rheumy started to reduce pred. We were on 15mg and reduced to 12.5mg over 1 month. Blood readings at the end of that month had gone in the wrong direction so was requested to hold on 12.5mg. I felt OK but did note a sense of some joint activity - nothing I could really put my finger on!

Blood readings the following month came good again but, some 2 months after holding on the reduction, we are still maintaining the status quo. I have another blood test this week. If that is good too I hope I may be allowed to start the reduction again.