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Chris G
07-03-2011, 03:38 AM
:crying: 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
07-03-2011, 05:58 AM
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
07-03-2011, 05:58 AM
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
07-03-2011, 09:20 AM
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
07-03-2011, 09:30 AM
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
07-03-2011, 09:44 AM
Thanks guys. I'm trying not to get too discouraged. I had to resort to shopping therapy today.

pberggren1
07-03-2011, 10:21 AM
Shopping therapy? What does this all entail?

Sangye
07-03-2011, 11:20 AM
Shopping. :flapper:

pberggren1
07-03-2011, 12:12 PM
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
07-03-2011, 05:19 PM
: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.

Sangye
07-03-2011, 11:13 PM
When I had my first round of rtx I was in a severe flare (lungs hemorrhaging). It stopped the bleeding but it didn't fully get the Wegs under control. A subsequent round 5 months later did that. I know that's not technically how it's supposed to go, but that's how it worked in my case.

ScreaminMeanie
07-05-2011, 03:56 AM
I had blood work done two weeks ago and talked to the doc last week. She had me start on a pred taper, but she has me alternating between 2.5mg and 5mg every other day. I've been doing that less than a week, so I don't know how it's going yet. Maybe talk to your doc about trying the alternating doses instead of a straight taper?

ScreaminMeanie
07-05-2011, 03:58 AM
Oh, also? I think I started the rtx a week before you did, and it has just been this past week that I've started feeling close to pre-wegs "normal." When I say "close to" I actually mean at least 50% of "normal." ;)