Rituximab

[gilders]

Thanks for all your kind words and support.
I'm really not in too bad of a place at the moment.
Blood results relating to WG activity are good. I know blood tests only tell half the story, but good results are still better than bad. I don't actually feel too bad if I'm resting (except for tiredness).
Although I'm feeling worse than pre-Rituximab, I can put this down to other reasons other than my Wegener's becoming more active - increased dose of steroids and lack of sleep.

Alysia - My creatinine result has improved slightly (288), but due to my symptoms my Dr has decided he still wants me to have the renal biopsy. This should be at the beginning of next week. He wants to see if there is any current inflammation or if it is all old damage.
I don't think you can have other immuno-suppressants whilst on RTX, such as Aza. I'm also trying to avoid Aza because I've been on it for about 15 of the last 20 years and it is causing odd-shapped, immature red blood cells.
I do agree with you about the longer the "smoulder" the longer it takes to get back in remission. This latest relapse started almost 3 years ago and diagnosis and treatment started almost 2 years ago. It's usually only taken about 6 months to get me back in remission, plus a few years still on treatment/meds.

Linda - Don't feel nervous about your first infusion on Friday. As I mentioned earlier, I don't regret trying RTX and, in fact, chances are I may need more/higher doses which I will accept.

Geoff - It's encouraging to hear that it can take quite some time to see the benefits from RTX. I was told that things should improve 6 weeks from first infusion. Perhaps because I'm not having an aggressive flare I won't see improvements for some time?
We will get to meet up. My appointment dates keep changing, so I'm trying to wait until things are a little more settled where I can plan a definite date and time.

Patty - I was also diagnosed just over 20 years ago. Hope the RTX goes well for you with no side effects. The only side effect that I'd consider bad is severe fatigue, but that may not be due to the RTX anyway (lack of sleep, one of my many other conditions, possibly WG becoming more active).

Geoff, Anne and Woz - Thank you.

I'll update with renal biopsy result. I suspect it will be old damage rather than active Wegener's causing inflammation, but we'll see. I hate renal biopsies. They're usually a quick and simple procedure, but things never seem to go as expected with me. The last time they had 15 attempts at obtaining a suitable specimen from my right kidney. They had to give up and move on to my left kidney where they succeeded after 5 attempts.

[annekat]

I don't think you can have other immuno-suppressants whilst on RTX, such as Aza. I'm also trying to avoid Aza because I've been on it for about 15 of the last 20 years and it is causing odd-shapped, immature red blood cells.

I'm sure I've read on here about people continuing to take another immunosuppressant while on RTX, or having an infusion of CTX before the RTX infusion (maybe not immediately before, but in close proximity). Perhaps this could vary with the case and the patient, and different docs have different points of view. Perhaps if you are new to RTX, they don't want to complicate things with additional meds. Or maybe in a more acute case, a newly dx'ed patient in grave danger would need to get a jump start with a faster acting med such as CTX. I don't remember specific mention of AZA, and your other reasons for wanting to avoid that at this point are understandable. I'm just wondering about this myself for the same reasons Alysia mentioned and would welcome any further discussion.

[Pete]

TB test was negative. First (of four) infusions scheduled for August 6. Will take last mtx on Wednesday.

[Alysia]

I am glad your creatinine is getting better gilders. Its important. You can be both on aza and rtx. My sweet Phil was for years.

[gilders]

I've just realised one of the reasons I currently won't be able to be on Aza and RTX - I'm on the Ritazarem clinical trial. As the trial is set up to see which is more effective - Traditional maintenance meds such as Aza or using RTX by itself as maintenance, than taking both would make the trail pointless.
I want to keep on the trial to help other people and future choices on how best to treat Wegeners, but I guess I should put my own health first as I'll be no use to the trial if things get "out of control". Obviously my drs will take me off the trial and give me the most appropriate treatment.

I actually had a phone call yesterday asking me to come straight down for a kidney biopsy. I explained that I hadn't stopped taking the warfarin and I was told I needed to be off it 5 days prior to biopsy. The nurse told me that it would be ok and they can reverse the effects of warfarin. I was under the impression that warfarin reversal was usually only used in emergencies. As I've had 3 or 4 DVTs I thought I better check with the specialist. He wasn't happy about warfarin reversal and cancelled the procedure. I now have to phone up on Monday to see if there's going to be any empty beds next week.

Glad the TB test was negative Pete. I'm sure you'll carry on with positive experience of RTX.

On a positive note. The nose bleeds that started just before my clinic appointment only lasted for 3 days and my sore throat seems to be clearing up.
Swollen feet and exhaustion are just as bad. If only I could sleep for more than 2 hours at a time, I'm sure I'd feel much better.

[Geoff]

Hope you get that biopsy sorted soon and some results to consider Gilders. Regarding the lack of sleep I have been on Zoplicone for some time now, es[ecially when i was on a high steroid doseage. I know some people hold their hands up in fear and shock with regards to sleeping tablets but lack of sleep is a "killer", and i found that by breaking that bad circle of 'no sleep' i had more to give to deal with the real issues.

I am tapering the doseage now i am down to 4mg of pred. Maybe you should give it a thought or two??

[Jaha]

Gilders,
I am so sorry that you do have to go thru with the biopsy now. I agree with Geoff about sometimes having to take something to help you sleep. I take Xanax at night to sleep other wise I can't sleep. We all know that sleeping heals the body and is very important for us with this disease. I have had 6 rounds of RTX and all but the last one was while taking Cellcept. The series I had in Nov 2014, really knocked me for a loop. I didn't feel good until I quit taking Cellcept in March2015 completely. I had told my Doc that I felt like I was being poisoned and was exhausted all the time. My Doc and I discussed the RTX study done in Europe, I assume now it's what you are in, she said that they were discovering that some patient's were being overly treated. I just had a one large RTX infusion on 6/29 and just this week I am starting to feel fairly well. My hope for you is that everything turns out good with your biopsy and that the RTX kicks in soon. Please take care of yourself dear friend.

[Birdie]

I've just realised one of the reasons I currently won't be able to be on Aza and RTX - I'm on the Ritazarem clinical trial. As the trial is set up to see which is more effective - Traditional maintenance meds such as Aza or using RTX by itself as maintenance, than taking both would make the trail pointless.
I want to keep on the trial to help other people and future choices on how best to treat Wegeners, but I guess I should put my own health first as I'll be no use to the trial if things get "out of control". Obviously my drs will take me off the trial and give me the most appropriate treatment.

I actually had a phone call yesterday asking me to come straight down for a kidney biopsy. I explained that I hadn't stopped taking the warfarin and I was told I needed to be off it 5 days prior to biopsy. The nurse told me that it would be ok and they can reverse the effects of warfarin. I was under the impression that warfarin reversal was usually only used in emergencies. As I've had 3 or 4 DVTs I thought I better check with the specialist. He wasn't happy about warfarin reversal and cancelled the procedure. I now have to phone up on Monday to see if there's going to be any empty beds next week.

On a positive note. The nose bleeds that started just before my clinic appointment only lasted for 3 days and my sore throat seems to be clearing up.
Swollen feet and exhaustion are just as bad. If only I could sleep for more than 2 hours at a time, I'm sure I'd feel much better.

Now that's a list of current issues and I'd guess it's incomplete as well. I hope it's not overwhelming to an expert like you, it was for me.

On the sleep issue... the advice I got was to jog around the block a few times, that'll make you sleepy. Uhm, people don't get it.

Hang in there.

[Pete]

And the liquid gold has begun flowing into me...

[LCL2013]

I had my first treatment last Friday, Pete. Had a small reaction (itchy ears and throat and even around my mouth), but the Benedryl took care of it. Good luck today! I get treatment #2 tomorrow.

Can someone remind me again how long it takes the Rituxan to start working? Other than these infusions, I'm only on 20mg of Prednisone and the roving joint pain is a real pain. Hope no other, unseen, damage is going on as I wait for the Rituximab to do its thing.