Anyone having Rituximab treatment?

[june_jdr]

I have had one course of Rituximab last year December however the benefits only lasted 5 months. I am due for a further course this Friday and than 2 weeks later. Just hoping that the benefits will last for much longer this time. I don't really want to go back on steriods. Is anyone else on Rituximab? and how are you doing on it? Is your health any better for being on it?

[purpleprincess]

hi..have had my 1st 2 doses of rituximab a few weeks ago, nt sure yet if it is workin, from what i know of it it doesnt always have full effect 1st round, i would try the 2nd to see how it goes. as for the steroids, i hear ya on that one, they make my weight yo yo, but my body has a tantrum when my doc drops me below 15mg ..let me no how you get on

[june_jdr]

Thanks purpleprincess, I'm the same on steriods my weight just zooms up...all i have to do is hear the word steriods and i've put on 3 stones..haha!!! I'm the same again with the steriods can't get down to a low dosage without problems but have really tried this time and will see if the Rituximab works on its own. Take care.

[NeeNaw]

I was the first person in Northern Ireland with lupus to receive rituximab and the first time I received it, I had a wonderful 6 months after, unfortunately later treatments did not have the same success, but I still got those 6 months for which I am so thankful.

[june_jdr in reply to NeeNaw]

Thanks NeeNaw, yes I only had a few months of bliss...thank God...it was at a time when I needed it. My mum was rushed into hospital and passed away 7 weeks later. If it wasn't for the Rituximab I wouldn't of been able to do the things I did for her with her. I thank God for that.

[NeeNaw]

June it came at a very important time for me too .... my son's wedding and I know if it had not been for the rituximab, I would never have been able to last just to the reception. However I did find that I worried everyday if it would last, and somewhat lost the "full" value of the remission. Am currently waiting on approval of funding for a new treatment for lupus ..... it's been about 6 months now and haven't heard anything .......... I am not on anything for management as I have been on the whole regime of drugs and to no avail, but I live in hope!! A common symptom of our disease also

[june_jdr in reply to NeeNaw]

I know what you mean NeeNaw...I've been through the list of meds and my body rejects them all causing problems with my kidneys, liver and last year nearly died from one of the meds. I am so hoping that Rituximab works this time round not quite sure what the next step would be if it doesn't but am not going to think negative...will go in tomorrow and all will go well!!!! Take care.

[LeeLee]

I am on Rituxan-the benefits are only suppose to last 4 to 6 months-I find that I feel much better after the second treatment is finished. I have never been on steroids just plaquenil, methotrexate, mobic sometimes advil, vicoprofen and the iv.

[june_jdr]

Hi All, its been a week since the first dosage and I have the second dosage on Friday 4th November. I'm experiencing extreme hot flushes, extreme burning sensations in my limbs...its driving me up the wall. Can't seem to do much without becoming very tired...and sharp pains in the head...I just hope all this passes...I could just scream!!!!

[june_jdr]

I've been in and out of hospital for the past 2 weeks longest stay this time round was 5 days so I have not been able to have the second dosage of Rituximab yet have to get over this flare up before I can have it.

[june_jdr]

Back to the Rheumatology day unit tomorrow for my next dosage of Rituximab hoping this one goes well without any mishaps!!!

[june_jdr]

My day at the Rheumatology Day Unit didn't go well today, one hour in treatment and I began to feel unwell, had the shakes, became weak and started throwing up. Treatment was stopped and anti sickness meds given. Doctor was paged...my consultant on leave for another two weeks so not quite sure what will have next. I am allergic to all oral meds...I did ok on rituximab last year but not this year...maybe its the stress of losing my mum this year...I don't know...will have to wait and see what my consultant suggest.

[charm81]

Had Rituximab for the first time in 2005 and went into remission until 2009 when my kidney function started to severely deteriorate. Had it again towards the end of 2009 but it did not have the desired effect. But I did appreciate the 4 years of remission because I achieved quite a lot in that time.

[june_jdr in reply to charm81]

Thanks for the feedback charm81. Rituximab worked for me last year for few months but this year it has done nothing for me so seeing consultant tomorrow to see whether we can try Cytoxan. What meds did you go on after the Rituximab not working? Hoping that you are ok and painfree. take care. June xxx

[charm81]

Hi June,

On a cocktail of meds at the moment. Unfortunately I have end stage renal failure and I am now on dialysis. I started peritoneal dialysis in May 2011. Things have improved but I really suffer from extreme fatigue most of the time and have tremendous arthritic pain, But things are generally under control. Most of my treatment is geared towards my blood pressure and kidney problems, but I do take 5mg of prednislone at the minute. I hope your consultant can sort you out. Take care, Charm81 xxx