Does anyone have any experience of rituximub? finally getting this in August, but do not want to be too hopeful.

[goingaroundthetwist]

quinoric, oral methrotrexate and subcutaneous methotrexate have not made any real impact and back on the steroids again.

[davinafrost]

Yes, I had ritux a few years ago now. I would say, at the time, that it did help me over the longer term. Actually I found the infusions themselves quite grim nearly always having to stay at the hospital overnight each time. It used to take at least 8-10 hours to get the stuff into me as I reacted to it. I also have Relapsing Polychondritis and have a friend who is also having Ritux for this and is finding it IS helping her. You might find you sail through administration of it. I really hope it helps you. Very best wishes.

[goingaroundthetwist in reply to davinafrost]

Hi Davinafrost,

It's interesting you saying about the longer term. I have been trying not to think that things will change immediately if they are going to improve, but cannot help wishing for this, which isn't good, so will have to focus on long term instead. Apparently I will be about 8 hours on both infusions. Thank you for your wishes. Best wishes to you. xx

[trueman]

Hi there. My partner has a rare incurable lymphoma. Been through 3 sets of chemo and a bone marrow transplant at age of 38. Rixtuximub was the element that made all the difference to him before his transplant. It got him back into remission (from stage 4) and that was when the consultants decided to do the transplant because he was in the best physical health to do it (which is more often the way experts approach transplants these days rather than waiting until its the last option). So for us - although it was a completely different medical problem - it was 'wonder drug' because other chemo treatments had not had that great effect on his overall condition. I know everyone responds differently to treatments but I hope this helps in some way.

[goingaroundthetwist in reply to trueman]

Hi Trueman, I am so pleased for the result for your partner and will take some hope from what you have said. It's silly but I'm a bit scared as I do react to things weirdly - like others. xx

[ami-June]

Hi I have s.l.e. I was diagnosef 10 years ago. Afew years after being diagnosed I was really poorly, thats when the offered me rituximab. Obviously I agreed strait away as I was in such pain. During the treatment, its tiring, boring but I slept through the most of it. After treatment I was home, I did feel really rough for a few days. But for 6 years it kept the s.l.e from getting angry again. Only now had it started to flare. Hope this helps

[goingaroundthetwist in reply to ami-June]

Hi Ami-June thanks for replying, hopefully I will sleep then, lol! According to the booklets given, it can help from 6 months to 3 years. If this doesn't help, I think I am going to look at coming off all these drugs. Hope you get some relief soon. xx

[flutterby]

Hi, I had rituximab several years ago. It helped me greatly for 2 to 3 years. The infusions were ok, given piriton so quite sleepy! The infusion gets started slowly and speed is incresed, it isn't uncommen to have a reaction, scratchy throat, temperature and then they slow it down a bit, or stop it for a while. Had mild reactions once or twice, but was fine after it being slowed down, for some people the reaction can be troublesome, and of course it takes longer if it has to go in slowly or be stopped. It was like a magic wand for me and sorted me out for a good amount of time. Wishing you all the best with it and hoping it goes smoothly for you. Xx

[trueman in reply to flutterby]

Oh yes, I forgot about this the possible reactions but as fluttery said they give you piriton and adapt the speed which you receive the infusion. I remember my partner getting quite drowsy and then having a slight reaction but it was all just fine in the end. Also you are monitored very closely and they do start off really slowly first. Looking at what people have posted here - I certainly think that ritux has helped extend periods of remission or recovery. So let that help make your decision.

[trueman in reply to trueman]

sorry flutterby - predictive typing changed that one to fluttery!

[flutterby in reply to trueman]

Hehe, I rather like fluttery!

[goingaroundthetwist in reply to trueman]

Hi Trueman, apologies for not replying sooner. I've gained a really good insight with chatting with the site. Will be nice to be off the steroids eventually. I have booked the following day as holiday from work, and am then on holidays thereafter till the next infusion, so I wont be off sick if it does affect me. Thank you for your post. xx

[goingaroundthetwist in reply to flutterby]

Hi Flutterby, apologies for not replying sooner. From what seems to being said, I will remain neutral but not negative. Funny you said about a magic wand, as Magic is a very special name to me. Thank you for your good wishes. xx

[mum-two]

Hi I have been having rituximab every six months for about 7 years now,I also have Cyclophosamide.I have the rituximab,then the next day Cyclophosamide then rituximab again two weeks later.

I don't get any side effects from the rituximab apart from tiredness and a bit of a funny head,the Cyclophosamide however is a different story.

Along with all the tablets I take,this treatment is what keeps the lupus sort of under control.

Just before I started the treatment the rashes on my body were horrendous,I could not use my hands as they were so sore and painful.The rash was also on my chest and back,my partner wasvputting on a whole tube of steroid cream a day just to cover everywhere.

It doesn't really help a lot with my joints though,only a little.A few weeks before I am due to have it again everything does flare up really bad again and I feel terrible,which is a pain as it takes nearly three months before I notice a difference.

The drowsiness you may get is because they give you piriton,they do me anyway.

The first time it is given they will put it through at a slow rate to make sure you don't have a reaction.

With me I am checked every half hour,blood pressure,temperature and asked if I feel ok.Each time the speed is gradually increased.

[goingaroundthetwist in reply to mum-two]

Hi Mum-two, again apologies for the late reply to your posting. It all sounds totally horrendous for you, my heart goes out to you. If I get piriton I will be asleep! Last time I was on a drip, My whole body became bloated and swollen, but I wasn't being very closely monitored at the time. I do hope that there will be some breakthrough with this pattern of events for you. Thank you so much for your reply. xx