All About Rituximab

[Brooke]

I wanted to start a thread about Rituximab since I will be starting this medication soon.
I am failing on Methotrexate and since I am in my child bearing years and due to the risks of other cancers with Cyclophosphamide, my doctors believe Rituximab is the best choice for me.

I would like to hear all stories, good or bad about experiences with Rituximab. For example:

1.) Why did you have to take this medication?
2.) Did you fail at another drug first?
3.) What medications were you on when you started Rituximab?
4.) What medications were you able to stop once you started Rituximab?
5.) How long before you were in remission after taking the Rituximab?
6.) How did it make you feel?
7.) What condition were you in prior to starting Rituximab?
8.) How many "rounds" of Rituximab did you have to do?
9.) How long does the infusion take?

I can probably think of more questions about Rituximab - but those are just a few

Any and all information will be greatly appreciated

[Brooke]

I start my Rituximab on April 30th

[elephant]

Great news! You will do well Brooke. Your going to slam dunk WG with the Rituximab!

[Sangye]

That's great news! I'll post a reply to the rtx topic tomorrow or later--I'm tired from being at JHU all day.

[Brooke]

Thanks Sangye get some rest!

[Luce]

Hi Brooke

I'll try to answer as many questions as I can, but I'm still really new to Rituximab myself and am still learning too.

1.) I was started on Rituximab on 12th Feb because I'd had a flare while on Cellcept over Christmas.
2.) My doc now describes me as a patient with difficult to treat Wegener's because I've failed on almost everything. In the beginning I had 3 infusions of cyclo and 6 weeks of oral chemo. Then I was put on Azathioprine but that was definitely not right for me, so had another 3 months of oral cyclo. Then I was put on Cellcept which held the WG back for 7-8 months but I was put on too low a dose and flared at Christmas. So now I'm trying Rituximab.
3.) I was on 2000mg Cellcept (upped from 1500mg but too late), 10mg of pred, blood pressure pills and stomach protector.
4.) I took my last dose of Cellcept the day before I had my first Rituximab infusion and am now on 7.5mg pred
5.) Not in remission yet - I had two infusions of Rituximab two weeks apart but didn't work as well as hoped so I am now repeating the treatment
6.) The Rituximab itself was very agreeable without any ill effects except a scratchy throat for an hour or two during the infusion - you are also given some pre-meds to stop allergic reaction. I have hydrocortisone and piriton which makes me very sleepy during the infusion, but after a good night's sleep I feel no different afterwards.
7.) I'm feeling ok, the flare caused some minor joint pain but I was not suffering from any other WG symptom except fatigue. My docs just want to see this thing in proper remission and because my ANCA result is such a good indicator they want to see it at zero before remission is considered. My Wegs hit hard and fast causing huge nodules in my lungs and wiping out a lot of kidney function, but I healed equally quickly with full kidney function returned and all the nodules have disappeared without scar tissue. So I don't tend to notice the wegs until I'm seriously ill, which has it's blessings but also means I have to act quickly when I feel ill.
8.) I've now had 3 infusions with another to come - the first two were spaced two weeks apart, then two months later I had a 3rd on Tuesday with a 4th in two weeks time.
9.) Take a book! I arrived for my first infusion at 9am and didn't leave until 4.30pm. They do take the first one very slowly and increasing the speed gradually to prevent an allergic reaction and they kept for an hour after the infusion to ensure I was ok to leave. The second one was quicker because I tolerate the higher speed well and I left at 2.30pm, I also didn't have to stay after. The third infusion was treated the same as my first due to the 2 month gap but again they didn't make me stay and I left at 3pm.

I hope this helps you Brooke and that Rituximab works for you. I think it will work for me but I'm just being a bit slow to respond to it.

Any other questions please ask away!

Luce

[gwenllian111]

1.) Why did you have to take this medication?

Because I could not tolerate other immunosuppression drugs. Aizothioprine, cellcept, methotrex, etc made me neutropenic, and I developed a severe allergy to cyclophosphamide which included liver failure, inflammed heart and lungs, high temp, vomiting...etc. So my Rheumy started Ritix, which, 4 years ago, was quite a new treatment but I had little other option by this point.
2.) Did you fail at another drug first?
As above. :-)
3.) What medications were you on when you started Rituximab?
Pred 40mg
4.) What medications were you able to stop once you started Rituximab?
Pred
5.) How long before you were in remission after taking the Rituximab?
9 months
6.) How did it make you feel?
Great. Induced remission, hadn't felt so good for years.
7.) What condition were you in prior to starting Rituximab?
Optic Neuritis, tracheal stenosis, infalmmed vagus nerve, neutropenia
8.) How many "rounds" of Rituximab did you have to do?
depends. first time, a round of 4, now, it tends to be two infuswions every 6 months.
9.) How long does the infusion take?
6 hours

QUOTE]

[elephant]

Gwen great question/answers! Something is going to work for you. Hang in there.

[pberggren1]

Yuck!

I have water coming in the basement in a different spot now by the bottom of the stairs. It is making the carpet quite wet in that area.

And then to top things off I have been killing ants in the house the last few weeks and have found what looks like to be a colony underneath the stairs. Any suggestions?

[elephant]

Sorry Phil, how aweful! We had to call terminex and they took care of the ants. We bought everything at the store that was suppose to kill aunts but it didn't work. Getting water in the basement is a nightmare. Are your gutters cleaned out? sometimes if we didn't clean out the gutters the water would come in the basement.