Rituximab

[LCL2013]

I didn't think about that, gilders. Thank you.

Pete - I also had to have a TB test done, as well as a chest x-ray. Managed to get them in the same day I met with the new Rheumy and the results for both were back the next day.

[Pete]

I didn't think about that, gilders. Thank you.

Pete - I also had to have a TB test done, as well as a chest x-ray. Managed to get them in the same day I met with the new Rheumy and the results for both were back the next day.

If the nephrologist hasn't ordered the TB test by noon on Monday, I'll ask my PCP to order it.

[gilders]

I started this thread as a reference for people who maybe due to start Rituximab. Now that I've completed my 4 infusions, I thought I wouldn't need to do any more updates. But as things don't seem to be going exactly to plan I thought I may as well do another update.

Firstly, a little back ground info that may make my current situation more understandable. Autumn/Fall 2012 first symptoms of relapse/flare (ANCA positive, fatigue beginning to worsen, etc). I usually relapse aggressively and my kidneys are first to be "attacked". This time kidneys were coping and I was only slowly feeling worse. Therefore a nasal biopsy wasn't performed until approx 12 months since start of symptoms. Autumn/Fall 2013 relapse/flare confirmed and my usual treatment of Pred and AZA commenced. This treatment is usually effective and fairly quickly does it's job for me, but this time, much like the relapse itself, it took a long time for things to settle and by the start of this year my kidneys had been damaged a little further.
By Spring 2015 my local Drs were sure that I was in remission. Bloods tests had been good (with the occasional blip) for a few months, yet I still felt more fatigued than usual. The things that concerned me were the fact that if my Dr believed I was in remission why hadn't he lowered my Pred or Aza for about 8 months?

I got in touch with Dr Jayne at another hospital as, as far as I'm aware, he's the "main man" in the UK for Vasculitis. I met him in April and he said that he would consider my Wegener's to be "grumbling", i.e. active, but not aggressively and was certain a reduction in meds would lead to a full blown flare. The decision was taken to increase Pred, stop Aza and start Rituximab.
This meant that if I was already in remission then I might not feel any benefit, but at least we should know for definite after all the RTX that I'm now in remission and the worse fatigue was something I'd have to accept as the the "new me".
If I was still slightly active (grumbling) then the 4 infusions of RTX and high dose pred will knock it in to remission.

I never thought of an option 3. I may actually become worse after the Rituximab and high dose pred. Unfortunately, this seems to be where I'm heading. I have been feeling even more fatigued than any period over the last few years, but put it down to post RTX infusions, but my last infusion was over 2 weeks ago. I've started with the nose bleeds again and my kidney results are worsening.
I had an appointment with one of Dr Jayne's colleagues yesterday and he was concerned. He wanted to increase my steroids but I persuaded him otherwise. I was due for my next appointment in a month, but he has changed it for 2 weeks time to see if there is any improvement (if not I don't think I'll win my no steroid increase argument). He has repeated some blood tests and if the kidneys show any more deterioration I will be back in for a kidney biopsy within a few days (my local hospital would probably have a couple of months waiting period so I'm impressed with this hospital).

I was really pinning all my hopes on Rituximab and it's been quite a battle to receive it (had to take part in a clinical trial to guarantee I'd receive it). I can't tolerate cyclophosphamide so I'm not left with many options as far as the "big guns" of treating Wegener's.

I've certainly not given up hope on RTX working for me and there is nothing during this experience that would make me think no to trying RTX for anyone else who needs it.

[Pete]

Hi Gilders,

It is very disappointing to read of further deterioration after rtx. That said, I've read that it takes several weeks to a couple of months for the drug to take full effect. I hope you start to improve soon.

On a personal note, I get my TB test on Monday. It looks like my first rtx infusion will be the first week in August at the earliest.

[annekat]

Thanks, Gilders. I have not yet been a candidate for RTX but have taken my lifetime quota of CTX, I think. So it is good to know what others go through with the RTX, and that the results are not always as hoped, in case I ever need it. I'm hoping that in your case, as Pete suggested, you just need more time with it. I'm glad you are staying with Dr. Jayne and his colleagues, who seem to know what is best for you, and that you'll follow through with their advice on the steroids if things don't get better soon.

[woz]

Thanks for the update Gliders, sorry to hear that you are a little unwell, like pete posted, It can can take a little time to get the desired effect, lets hope it kicks in soon, and you can get back to normal. Will see my ruemy in a month, i will hopefully find out more info regarding Rituximabs use in Australia.

All the best......Woz.

[Geoff]

Hi Gilders, sorry to read your latest post, I know how dispiriting it can be when we pin our hopes on a drug or treatment and things don't pan out quite how we envisaged.

I was surprised how long, i.e several months, before i felt any improvement after taking RTX, and in fact it wasnt until i finished the 2 year cycle of infussions before i finally platformed out. I am hoping that this will be the way it works out for you my friend.

Phsychologically its great to have Dr Jayne or your case and the full weight of the Addenbrooke's team behind him. Their quickness to deal with issues is also very encouraging and we know they will keep close to you all the way.

I'm not into Clinic 12 until friday 28th August and so i hope to hear that you have stabilised out before then. If you need a bit of moral support, give me a call and i would be only too happy to pop up to Cambridge and meet up.

All the best and take it one thing at a time.

[Alysia]

Dear gilders.
I am sorry that you are not doing well.
Please consider the following: after smoldering (grumbling) for about 4 years it took me 2 rounds of rtx to get into remmission, 6 months between them, 2000 mg each.
My hypothesis is that the rtx didnt yet start working for you and since you stopped the aza, you are not "covered". Maybe you should be back to the aza ?
The longer the smoldering, the longer it takes to get into remmission. Kind of stubborn wg.
How much is your creatinine ?
Is plasma pheresis an option ?
As for the fatigue, for me2 after each round of rtx (and I already had 5) I have about a month of crazy fatigue and pains all over the body, like after car accident.
Hang in there. Praying for you, my friend, and asking my sweet dr. Phil to help you from his good place in the presence of God. We can count on him.
please update us.

[PattyL]

Hi Gliders, I just started rtx July 25th. I will have my next infusion in 2 weeks I was told that is when I will start to notice a difference. Sorry to hear rtx did not help you. I also have kidney,lung,involvement I was diagnosed over 20 yrs ago. Hope this does the trick for me. No side effects.

[LCL2013]

Hi Gilders. I'm so sorry to read that you're feeling worse rather than better after your round of infusions. Hopefully, what others say will happen for you and you'll begin to improve as time goes on.

I'm a little nervous now about my first infusion on Friday. I too never considered an Option 3, that I might actually be worse afterwards. I'm still only on 20mg of Prednisone and, other than some joint swelling, I don't feel too bad. I know things are happening (fluid is starting to build up in my ears again) but they haven't really impacted me yet.

Please keep us posted on how you're feeling and I really hope you start to see improvement soon.
Linda