Date: 10.10.2014
From: suze
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Subject: rituximab
Hi all its been a while. Ive been told today I'm going to be starting rituximab in the next few weeks, has any one got any thoughts on this treatment thanks x
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Date: 10.10.2014
From: rhona
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Subject: Re: rituximab
Hi Suze, I've been on it a couple of years now and having my 4th course of it, I had an infusion on Monday and will have another 2 weeks later. I have found it to be brilliant, before I got it I could hardly move and was on steroid injections every month and still in agony. It really has made a big difference to me. Up until now I have had no bad side effects and keep hoping that it will continue that way. If you want to know anything else just ask me. You will be in the hospital most of the day having the infusion. x
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Date: 10.10.2014
From: suze
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Subject: Re: rituximab
Thanks Rhona I'm a bit worried about it only because I don't no what to expect. How long does it take x
How long did it take to see any results and were you able to go back to work sorry about all the questions I hope you don't mind xxxx
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Date: 10.10.2014
From: rhona
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Subject: Re: rituximab
Hi Suze, It's only natural to worry, I was the same. In my case it took quite a while to work (4 months) but a lot of people get the benefits much quicker than that. If I had still been working then I probably could have went back to work when it kicked in as I felt almost normal again. It had been 10 months since my last infusion so it's good that way, some people get it every six months and some get much longer between infusions. xx
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Date: 11.10.2014
From: suze
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Subject: Re: rituximab
Thanks Rhona x x
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Date: 19.10.2014
From: Kathleen
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Subject: Re: rituximab
Hi Rhona, you may not remember me but I usually come on to ask questions for my husband and I have spoken to you in the past. Well things have got worse since I was last on the forum. Maurice had Rituximab last year and it really worked for a few months. So he was all ready to go for another treatment when everything that could go wrong has. His diabetes upped his blood sugar due to the steroids and the consultant wouldn't allow him another treatment until his blood sugars were under control. Ok we managed that then he came down with some sort of infection we still don't know what, and then his left eye became blurry so he ended up at A&E. The eye doc was brilliant and she admitted him he was put on antibiotics and his eye slightly improved but was starting to affect the right one. He was in for 10 days came home Friday just gone. He now has to go for a temporal artery biopsy to try to find out what has caused the blurryiness, of course we all thought the nast word tumour. But it isn't a tumour. So until his health and blood sugars are back to nearly normal he can't have the Rituxmab and he is in agony with his knees. The reason being apparently if they give you the treatment and your blood sugars are high it can cause you to go into a coma. So sorry for long rant, we are not happy bunnies at the moment. To top that I've been ill for two days with a fever and shiver! Agh well moan over. Hope your doing ok. Regards Kath n Maurice x
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Date: 19.10.2014
From: Kathlee
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Subject: Re: rituximab
Suze don't be worried it's not bad at all I think the most painful bit would be the needle going into the back of your hand. My husband has had it twice and the difference in him was amazing. He was in the RA clinic for about 4 hours. It may be different in your neck of the woods but they do say 4 - 6 hours usually. Good luck Kath and Maurice
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Date: 19.10.2014
From: rhona
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Subject: Re: rituximab
Hi Kathleen, They don't put a needle into your hand here, just a vein in middle of arm.
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Date: 11.11.2014
From: suze
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Subject: Re: rituximab
Hi I'm due to have my infusion on 18th DEC then again on 31st DEC so don't think I will be going out partying lol xx
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Date: 11.11.2014
From: rhona
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Subject: Re: rituximab
Good luck with it Suze, I was fine after my infusions, so you never know, partying might still be on the cards. What a good Christmas present that will be if you feel so much better. Let us know how you get on. xx
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Date: 11.11.2014
From: rhona
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Subject: Re: rituximab
Kathleen, I am sorry but I must have missed your post, I do apologise. I do remember speaking to you before. I am sorry to hear that Maurice is having such a bad time at the moment. I hope they get to the bottom of it and find out what's causing the blurriness. It is such a worry, my daughter is diabetic and had two operations on her eyes last year. I hope you are taking care of yourself, Kathleen, as I know it can be very stressful worrying about our families and sometimes we neglect ourselves a bit. Let us know how he gets on, good luck. xx
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Date: 19.11.2014
From: Kathleen Bass
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Subject: Re: rituximab
Thank you Rhona I saw your other post. He isn't doing too well getting very depressed. He seems to cope better with his RA than this eye problem. Of course the biggest worry is going blind. The eye consultant told him he wasn't but your mind can do a lot of harm can't it. Once again it's a waiting game. Meanwhile I'm having an injection for a dysfunctional sacrelium! That is how the spine doctor described it so maybe this time next week I can walk without pain yipee you never know! regards Kath and Moz x ps got gout at the moment but it is easing off from a hop to a limp lol
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