Iron infusion

[Luce]

Hi all

I had a clinic appt yesterday with renal docs and things aren't looking so good. I'm having a flare so it looks like Cellcept can't hold the WG for me, even though I tolerate it really well. I have to up my dose to 1 gram twice a day and pred up to 20mg from 5mg, then drop to 15mg for two weeks etc back to 5mg.
I'm back at the clinic in a month and if the increased meds haven't worked I get to try lovely Rituximab! My doc doesn't want to put me back on the cyclo as I've already had 6 months of it and they're concerned about fertility amongst other things. I'd appreciate some feedback from anyone who's had Rituximab as to what I can expect.

Also, my Hb and iron is low so I have to go in as a day patient to receive an Iron infusion by IV. Has anyone else had this and if so, is it a breeze?

On the plus side my liver and kidney function are good, lungs sound ok, I've lost a couple of kilos and my cholesterol is 4.8. I think the flare may be affecting sinuses and ears this time as I constantly feel congested and am deaf in one ear for a lot of the time. I've not had involvement here before but it looks like I get to experience more of a full range of WG symptoms.

Disappointing as I've been steadily improving for months now, but the only problems I notice are the deafness and being even more tired than usual due to the anaemia.

I guess I may as well end this year in the same way I started it, but the wedding is going ahead whatever!

[Sangye]

Oh, Luce, I'm sorry to hear you're in a flare. What dose of Cellcept have you been on? The usual is 2,000 mg/day. The problem with increasing it once a flare has started is that it takes a month to kick in.

That's what happened to me. I was on 2,000 mg/day for a long time and it never felt like enough. We increased it to 3,000 mg/day once the flare was in full swing but it was too late and the Wegs outran it. That's how I wound up on cytoxan. But it destroyed too much bone marrow, and that's how I wound up on Ritux!

I haven't had iron infusions. When I got my rtx infusions several people were getting iron. One had an immediate allergic reaction (treated with benadryl and IV pred) to one type. She later did just fine on another type.

[Luce]

I've only been on 1500mg a day, do you think that's a little low?
I am very much a larger girl but I'm not sure if dose is decided on weight like with ctx, my doc said yesterday that a max dose is 3g a day but they're reluctant to go much higher because of the low haemoglobin levels and anaemia. I'm also worried that this might be too little too late and wonder if a 4 month gap between blood tests and check ups was too long. I've not worried because my ANCA has to be way up before I feel ill and I've not really had any definite symptoms. ANCA's always been a reliable marker for me and I've gone from 10 to 53 in four months, which is the smallest flare I've seen since being diagnosed.
I'm also wondering if having the seasonal and swine flu shots are responsible for the flare...

[Sangye]

Cellcept isn't dosed by body weight. It seems odd to me that they wouldn't fix your anemia if it's interfering with you taking a full dose of Cellcept. Seems backwards to drop the Cellcept because of anemia! 1,500mg/day is very low.

A 4-month gap is definitely too long. Three months is the usual for a check-up until you are well into a solid remission. Blood tests should be done more often than every 3 months unless you are doing very well and improving all the time.

The shots may have something to do with it, but there's nothing you can do about that now.

[Luce]

I feel a little annoyed now that I've been let down a bit by doctors and their bad decisions have caused the flare.
Let's hope they can put it right before any damage is done...

[Sangye]

Believe me, I understand.... My past docs really screwed things up!

For my current flare, though I'm not upset at my docs. I knew I was flaring in Feb/Mar but it didn't show on blood work. My inflammatory markers were fine! By the time the symptoms went wild it was too late to get it under control with Cellcept, and it also meant having to go back on pred. But now my docs know that my symptoms are more accurate than the blood work, so it shouldn't happen again.

I hope they get your flare under control easily and quickly.

[Jack]

Sorry to hear about your flare up Luce, hope the increased meds work for you.

When I have had trouble in the past, I've had weekly visits to my doc for bloods etc, but perhaps it is easier for me because I live so close. I do think that your condition needs more detailed monitoring though. It is all to easy for things to run away and get bad if you don't keep a close eye on them.

[elephant]

Sorry Luce about your flare. I agree with Sangye 1500 of cellcept is low. I'm on 2000mg of cellcept. Need to have a check up at least once a month since your flaring. Hang in there, we are holding your hand for support.

[Luce]

Thanks everyone, I didn't realise my dose of Cellcept was so low - the doc who prescribed is a bit of a maverick and I think he acted too rashly to the good progress. Most of the other docs at the clinic have been far more cautious and use the softly softly approach, unfortunately the renal team is made up of about 8 docs and I just see whoever is taking the clinic that day and they al have differing opinions.
Thanks for all your kind messages

[Sangye]

The more I learn about Wegs, the more I appreciate the "softly softly" approach. Each time I've started to feel a bit better I've asked my Wegs specialist if I can stop pred or whatever drug I'm on. He's taught me that you have to let the Wegs fire get completely extinguished-- no smoldering embers-- before you start lowering doses or removing drugs. Of course, you have to lower pred doses as you improve, but there's a threshold dose that you can't cross until you're out of the woods-- different for everyone.