[nadiasophia]

Just thought i'd get your ideas on the 'new' treatment i'm on. To start with, I have always been on pred and mycophenolate (doesages went up and down over the years). I have also had 6 months of cyclophosphamide a few years back. For the past year after a flare up that resulted in water retention all over my body I have been on diaretics and ramipril which is normally taken for blood pressure. The ramipril is good at keeping protein in the blood, I had lost a lot due to my kidney involvement, hence the flare up. My new doc told me about this new treatment 'Rituximab' it works in the same way as cyclophosphamide (a bit slower) but it is far safer. It has worked well on me. Have any of you had it or heard of it?

 

[mooks]

hey, im sure alot of people will answer this post as rituximab is getting more and more popular for treatment of SLE. I am awaiting funding for it from the PCT at the moment. Glad to hear its working well for you!! xxxxxxx

 

[lazylegs]

I recently had my fourth set of infusions. Rituxan has been great for me. Initially it wipes me out, even more than Lupus fatigue. The first improvement for me is usually in the cognitive area. Slowly the other symptoms begin to recede. It hasn't helped all of the neuro symptoms but it does lessen them. I don't have kidney problems so I can't help you there.

The only side effects I had during the first infusion were flu like symptoms. I had a slight fever, chills, sore throat and aches for the first hour. Tylenol took care of those symptoms. Since then I have never had any side effects.

I wish you luck with your decision.

Take care,
Lazylegs

 

[Fairy]

It's been a bit average for me - the effects seem to last about three/four months, and then symptoms start coming back. It's never stopped me leaking protein, but my kidney's haven't got any worse, so that's definately a bonus.

Have to say though, if my doctor said I could take cellcept again, instead of rituximab, I'd bite his hand off :lol:

 

[Mysticred]

I am waiting on my next set of rituxan

I am waiting on my next set of infusions. I was suppose to get the first of the set on the 12th but it has been canceled once again due to what this time I will not know till the 11th when I see my doctor and he runs more blood work.

The first set I got last June and I went from a almost year long flare and my kidneys being attacked by my lupus. Too the point I went into renal failure. I was put on the infusion because it was a lot safer for my kidneys since now I must have kidney friendly medicines. But my lupus flared again causing my kidneys to once again go haywire.

The waiting to get it is what gets to me. I know the infusion works I felt wonderful following both infusions. Not one single side effect, did not even get the raise in blood pressure I was told one would get during the infusions. The infusions for me are normally 8 hours for the first one, two weeks later for the second and it is normally 6 hours.

My doctor is hopefully that the infusions will slow down the damage being done to my kidneys and put me in what he calls a non ending remission only having the infusions every 6 months or if very lucky once a year. Either would be fine with me as long as it works.

I am afraid though getting my insurance to pay for the infusions have not be done. They flat refuse to pay. So I have been lucky that a company named Gentech is covering it for me. Right now I am waiting on being re-qualified for them to continue paying. But my doctor is so sure about the use of this drug that he is even willing to cover the cost himself for me.

I hope it works for you and you have no side effects should you decide to try it. I am with Fairy I would not go back willingly to my old medicine simply because of the damage done to my joints and my kidneys. I was on a high dosage of steroids for about 6 years, big mistake not good in the long run for a person's body or frame of mind. My son called them the B*t*h pills because of my non ending mood swings. Cellcept made me so sick I would have rather dealt with just the lupus and it was one of the many drugs I was on that seem more harmful for me then safe. I have ran the gamete of numerous medicines for my lupus that I seem to be running short on what is left for me to take and it not effect my kidneys.

Good luck with your decision.

Dawn

 

[Fairy]

I should clarify - I meant I'd prefer the cellcept, it worked much better for me. Sorry for the obscure british saying... :hehe:

 

[nadiasophia]

Thats interesting to hear about how many of you have to apply for the rituximab. My consultant doc had to apply first time but it only took 2 weeks and from then on i can have it every 6 months. when i am given it, it is over 6 hours now being constantly monitored. I have never had any side effects from it (they give me piriton first which knocks me out a bit - quite nice actually!)

Hoping to have another infusion this summer

 

[onetay]

I am not taking this and have not had to yet, but I have heard of it. It sounds like a promising drug. It is good news that you are doing well on it and that it is safer that is what we all need safer meds. It may take some time to get in your system but as someone once told me good things come to those that wait lol.

It is nice to hear that somethings is working for you. I hope you keep feeling well and doing well.

 

[dixy]

hi

Working well 4 me on 4th lot now usually every 6 months but had this one brought forward a month. As flaring started so want it knocked on the head before it gets hold of me (not going back there)

2nd treatment 13 May and I have clinic appointment same day too. So Im ready with my list of questions for her and taking a pen to write the answers (brain fog lol)

Good luck Michelle hope u get yours soon and start to feel better

dixy

 

[roxie_P]

ive had this drug 2times first time was for my kidneys but was far to late and i did end up on dyalsis but 2nd time was when i had fulied round my heart from really really bad flare and you will now find it is giveing along with a does off cyco just in case you need it again its to help make sure you dont have allgys to the drug..

i found this drug great you dont feel as is with in 6weeks my joints where not as pain full all the problems with my heart settled down and am not ready for my kidney from my dad so i would tell any one who gets the chance take the rutuxinab,, xx

good luck

 

[roxie_P]

hi

Working well 4 me on 4th lot now usually every 6 months but had this one brought forward a month. As flaring started so want it knocked on the head before it gets hold of me (not going back there)

2nd treatment 13 May and I have clinic appointment same day too. So Im ready with my list of questions for her and taking a pen to write the answers (brain fog lol)

Good luck Michelle hope u get yours soon and start to feel better

dixy

ahh you are haveing it every 6months i was told this should not be done as not studies have been done to see long term affects??