View Full Version : Serum sickness & ritux?

09-15-2009, 02:45 AM
Has anyone here had a bad reaction to ritux, like serum sickness?

My brother noticed last week after his infusuion that his right thumb was swollen and painful, but not terrible. It was written off. Then last night, his entire right wrist became very swollen & very painful and he was readmitted into the hospital. He is on lots of steroids & pain meds to get it under control. Right now they're thinking it may be serum sickness... his last ritux infusion is supposed to be today. We're not sure if he'll be able to do it. :(

Does anyone have any experience with this? And if cytox has failed for you as well as ritux, whats the next med to try?

09-15-2009, 02:46 AM
Here's serum sickness... and ritux is named as a huge culprit.

Serum sickness: MedlinePlus Medical Encyclopedia (http://www.nlm.nih.gov/medlineplus/ency/article/000820.htm)

09-15-2009, 07:12 AM
I thought they gave Benadryl along with it to prevent that. I really don't know--that's just what I've heard from a few people on it. They said it was routine.

09-15-2009, 07:19 AM
Apparently he's been on the benadryl... an MRI was done this morning and if there is fluid there, then they'll drain it and look at it. He's feeling better after a bunch of steroids and might go home today. They've tentatively pushed back his ritux to tomorrow.

09-15-2009, 02:48 PM
As long as the docs are on top of it just keep up your strength

Martin Thomas
09-15-2009, 07:12 PM
I'd be heistant to quit the Rituximab unless the docs say so. It rarely produces side effects so your brother has been unlucky. It's not an instant fix and may take up to 18 months to fully quieten the disease but in the majority of cases it does work. The alternaves after cyclophos. and Rituximab are things like Campath and other chemo treatments which take out the whole of the immune system and have less than nice side effects.

Information on the drug frm the UK's leading consultants at Addenbrooke's in Cambridge, UK can be found here (http://www.cuh.org.uk/resources/pdf/patient_information_leaflets/PIN1090_rituximab.pdf). Their current regime is to initially give the drug in 4 x 1 weekly doses then give a single full dose every 6 months for 2 years.

If it wasn't for this drug I'm certain I wouldn't be here and can't say enough in its support.

Best wishes.


09-16-2009, 01:05 AM
Thanks for that link, Martin. I'm hoping to get started on rtx soon. How long before you were feeling better?

Martin Thomas
09-17-2009, 05:31 AM
I didn't begin to feel much better for about 3 months although my markers did improve before then. That said it's took me about 12 months (3 doses) before the general vasculitis went quiet in clinical terms. In the meantime the damage caused whilst the previous treatments weren't working means I'm still not feeling particularly great despite things appearing as if I'm in remission after about 20 months.

09-17-2009, 10:11 AM
Gad! I hope you do start to feel that "Eureka!" moment when you recognize you feel, if not perfect, not too dang bad! The "new normal"!
Be sure to let us know when you have that moment so we can all help you celebrate it!

Martin Thomas
09-17-2009, 07:39 PM
I'm not sure there was a 'Eureka!' moment but there was a huge sigh of relief when finally something showed signs of making a positive change. I like the 'new normal' description - exactly right. I suppose the very nature of this disease means it's not unreasonable to live in a little fear of things going backwards, if only briefly but at least 3 steps forward and 1 back is better than the reverse.

Feel free to start the party anytime - everyone here is especially welcome!

09-17-2009, 09:06 PM
I got quite sick after my second rituximab infusion (fever and vomiting) but it passed within 24 hours.

They gave me Piriton and paracetamol during the infusion to help with side-effects but I have heard some doctors also give some extra steroids?

As for how long it takes to work, my B-cell-count goes to zero within days. But symptoms-wise, the first time I had it, it took a month or so to help. That initial treatment was as a steroid-sparing agent and to give some extra help while I was reducing my Cellcept dose. The second time I had it though (9 months ago) it was to try and help treat a flare and it hasn't helped my symptoms at all. I'll get another dose when my B cells return.

Hope that helps!:)

Martin Thomas
09-18-2009, 07:30 PM
Interesting how different consultants approach prescribing this drug. My regime (delivered across 2 years as described above) is delivered irrespective of B-cell count and the only thing which once delayed it was a very low general antibody count.

09-21-2009, 03:24 PM
I often wonder why wee have to undergo the chemo and pred therapy even metho if rituximab or other m less toxic methods work, are we not worth anything to our governments

Martin Thomas
09-21-2009, 07:45 PM
Here in the UK it's becasue the drug isn't licenced for WG and I suspect that as it's extremely expensive it's use isn't widely encouraged by those who are least appreciate its value.

Best wishes


09-22-2009, 02:04 AM
In the US none of the drugs are licensed for Wegs. Even ctx is used "off-label." The reason ritux isn't used first is partially because it's new and there aren't tons of studies showing its efficacy, and partially because of the expense. I think the former is changing, and if it is, the latter will eventually change also.

09-22-2009, 03:39 AM
Here in the UK it's becasue the drug isn't licenced for WG and I suspect that as it's extremely expensive it's use isn't widely encouraged by those who are least appreciate its value.

Best wishes

I was using Mycophenolate before it was licensed for use on Wegener's. Because my hospital runs a vasculitis research center, they were able to justify its use as a drug trial. If I ever needed Rituximab, I hope the same would hold true.

09-30-2009, 02:11 AM
Same holds for Canada, no drugs are approved for Wegs, it seems we are way off the charts. The ones that are dispensed may be used for autoimmune diseases but have not been approved by FDA.