I am waiting for my appointment to have this for the first time. I have SLE and have had it for 30years or so. Nothing seems to keep it under control, I have tried many different medications. The only thing is, I have read all the horror stories about death and infections and such... I don't know what to do!
Suggestions? Anyone got prof that it is okay?
Helen x
Hi Helen,
Ive had the Rituximab medication, and I too, had heard all the horror stories! Unfortunately, certain meds do not go with everyone-hence horror stories.
I had the treatment back in May this year, it wasn't a great feeling, at first-particularly-with the 2nd drug your given alongside the Rituximab. I had flu-like symptoms; fever, headache, sweats. This did subside after 2-3 days, however, and have been feeling considerable better since!
Good Luck, and keep me/us posted of how you get on!
MonnyPenny
My daughter is only 16 with sle . The dr have struggled to get it under control and after 12 months of near enough living in hospital, they used rituximab . After giving it to her , her face, lips and throat swelled and she was struggling to breath . Along side the rituximab they injected her joints with prednislone. But for this one little hiccup we are now 10 weeks of being at home and she now no longer needing a wheel chair when walking short distances ...
The dr take rituximab very seriously due to the cost ! So good luck and I hope it helps like it did with my daughter xxx
Hi, I had Rituximab every six months from 2007 to 2009. I then had a break and now back on it. My lupus attacks my lungs and they were deteriorating quite rapidly until I got the Rituximab. Now they have stabilised. It is a very expensive drug so your consultant would have thought about it thoroughly before putting your daughter forward for it. It is a biochemical drug so there can be complications, but the hospital keep a very close watch on you and any problems they stop and get sorted. You can also get a biochemical aware card from arthritis uk free. Which you should carry around with you so if you are I'll away from hospital they know this.
I hope this helps.
Carole
hi
great feedback on this, I have been offered this about 3 times in the past 5 years but have chickened out...due to the bad feedback. Of course everyone reacts differently.
I for myself am not comfortable whether it will work for me as I tend to react and have allergies to things...
After 20 years with lupus...I am reluctant to having this.
There are chances of permanent brain damage and for this...I wont do it, plus I was told I would still need to stay on certain current meds (lower doses) so not worth the risk for me.
I have been scheduled to have my first session of riutoxicmab on friday and i dnt know what reaction to expect. i just need a solution to my sore fingers. I pray that this treatment gives a lasting solution to this pain. I had iloprost which is a painful treatment and also had a plasma exchange but the effect was short lived. I really hope it works with little or no reaction. I pray your treatment works for you. How have u coped for 30year pls tell me?
I am waiting for the funding for this drug. My consultant has appealed as I was turned down for the funding. I have SLE Mixed connective tissue disorder with lung involvement. I am now using ambulatory oxygen so I can go out and not be stuck to the house. I have had Cyclophosphamide (Chemotherapy) three dose 2011 and 2013 but the effect only last a few months.
I am now terrified of having this new drug with all the horror stories I have just read but I also don't want to go back to the chemo as that was also horrid.
Hi I have been having rituximab and Cyclophosamide every 6 months for the last 7 years.Funnily enough I have had rituximab today and am having Cyclophosamide tomorrow.This treatment has really helped me.The rituximab isn't too bad I just feel a bit light headed and very tired,but tiredness is more to do with the a antihistamine they give you before.
The Cyclophosamide I ave tomorrow makes me feel quite sick for a few days,I you have Cyclophosamide ask for ondansitrone (can't spell) tablets they are fantastic.
The hospital will check your obs every half hour through out treatment so if you do have any sort of reaction they will spot it quickly and stop the infusion.Luckily I have always been ok.
If you have been offered this treatment because nothing else is working it really is worth putting up with a few days feeling a bit rough for the results that most people get after.
I will say though it usually takes up to three months to see results and the amount of time they last varies from person to person.
If you do decide to go ahead good luck and I'm sure you won't regret it.
Thank you all so much for your feedback, it is very much appreciated. The hosp rang and I go for the first dose next Friday, 11th October. Eek! My biggest concern is the brain damage. I am still unsure... Will keep you all informed! X
Hi, I had rituximab for first time in Summer. I actually did not look into any of the side effects! All the other meds side effects seem to mirror what the diseases do anyway, lol. I just wanted to see if there was something that will actually help. Still waiting. Get the 2nd lot of treatment next year, not overly hopeful that it will do anything at all, but who knows? Actually, today I told myself I wasn't going to take the stupid metoject, and the useless hydroxychloroquine. I did take the hydroxy, and may inject the metoject tomorrow. Sick of being on prednisilone and looking like a frog, which get's me down. Specialist said to wait untill I can see improvement from the rituximub before reducing the steroid. I cannot honestly say that there has been any improvement at all. I thought to myself today about how long I'd suffered from all of this without knowing I actually had this. The Gp told me the other day, the usual cliche "we don't have a magic wand"! - emm I don't want a magic wand, just some help please. Ultimately, as it seems to have been mentioned by many knowledgeable people on this site before, that these drugs have been formulated for rheumatoid arthritis and as far as I can gather, rituximub is the same. It would be nice for some pharmaceutical company somewhere to look at out side of the coin and maybe we would not be looking for the proverbial magic wand. Getting told the magic wand cliche, is basically the doctor telling you that you have to get on with it and learn to 'manage'. I'd like to see some of these people put up with all the stuff we have for just a week. Perhaps I should not have commented on this for you, as I have been so depressed lately, that the consequences of the side effects of treatments don't actually matter to me any more. And the next person who asks me what it is that's wrong with me and then on hearing my reply, contributes by saying that they know someone with lupus, I am going to go nuts and ask them if they actually comprehend what s.l.e is! - sorry, have taken this opportunity to rant. I pray that there will be respite for you very soon.
Bless you xxx I know what you mean and feel the same but, getting on and managing is very difficult and without my anti depressants, I don't know where I'd be!! X
Hi Helsbels, I have stopped taking the duloxetine 120mg! so sick of being full of drugs. They seemed to work at first and lightened the load, but I feel it could possibly be the easy answer for doctors, to write a prescription for anti depressants. It's like being part of an experiment, but that you are not a willing or happy participant for. I am very grateful for everything the NHS has done and is doing for me though. Hugs - xxx
Hi
I had rituximab for the first time last year as I too had many problems in controlling the sle/myositis I too had read all the things you have so when it came to having the infusion I was very worried. However on a positive note I felt sick and had a terrible headache that lasted a few days but that was it. As for how well the drug worked I would have to say better than some but not as well as I would have liked but then that would be a cure! Hope this helps to relay some fears although we are all different I would say it's worth ago. Hope it is a positive outcome for you take care xxx
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