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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Hi All Hope everyone is doing oK, I hate putting that because no of us on here are  Had my first Rituxmab infusion yesterday, was at the Hospital from 9 til 4. Very tired and achey today. My next one will be on the 10th of December. Love to you all Take Care Lou x I love people who can make you smile even when you do not feel like smiling. x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Pleased to see you haver had your first RTX infusion.
Have you had any reactions ?
Hope not. I had a bad reaction after the first one by way of a very bad rash and high temp. It settled though after
48 hrs.
Good luck for your 2nd one.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Good luck Louise. I hope it works for you. Keep us posted. I really like to hear how people get on with different drugs. I hope the aches you feel today will be worth it in the end. XXX
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Rank: Advanced Member  Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Hi Louise - that was a really long day for you - no wonder you're tired afterwards. The first one is bound to be extra stressful, so hopefully you'll feel the benefits soon. Take special care of yourself this weekend. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Glad it went O.K. hope it works for you. My first infusion took all day, didn't leave the hospital until 9pm.!! Arrived at 10am. Second time was shorter, so fingers crossed!!  Zena x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi everyone, I have my first infusion on 3rd January. I'm getting really nervous, and thinking "do I really need this?" I've just seen how long it can take!! I was told 9 - 3. Also, I've just seen on facebook that someone says they have had hair loss. I thought we didn't have to worry about that? My hair has already thinned due to the methotrexate and I don't want to lose more!! I have failed on Humira, maybe I should ask to try Enbrel? Am I being stupid and vain, I know health is more important, but I can't help it. Already feeling depressed and anxious BARBARA
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 90
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Hi,
I am like you, Barbara, worried about going on Rituximab, which the doctor wants to put me on, as I am failing on Cimzia. I have been on it for 20 months, and my blood test results (CRP and ESR) have been all over the place, from the high seventies down to 4, and then up again. Last month the CRP was 28. which is not good enough, considering I am on 25 mg mtx and 3 mg predniselone as well. I have also lost a lot of hair, it has become very fine. Yesterday I had my hair cut, the hairdresser cut too much off, so I feel bald today, which is not a good feeling. My hubby does not like it at all, but he is diplomatic and has said nothing, bless him, not to upset me further.
Why does the initial infusion take such a long time? Please tell me, what it entails, I really don't fancy sitting in the hospital all day.
I would like to hear from somebody, who has been successful on Rtx, because I find it such a big decision to take, putting some new poison into my body. Rose writes that she had a bad reaction, does it mean, they stopped the treatment? How are you now feeling, and what are you on?
Merete
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Rank: Advanced Member Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Barbara and Merete,
Unfortunately, rtx was not successful enough for me, although it did help a bit, so I can't help you there
I think after failing on one anti tnf treatment, nice say that rtx has to be the next step or at least that is what I was told.
The reason for the infusion taking so long is because of the careful monitering that has to be done.
At first the drug is administered very slowly, with blood pressure, temp. etc taken every 15 minutes in case of bad reactions.
After a while it is speeded up a bit, but still has to be very closely monitered.
I had no reactions what so ever. My temp. did rise a little so was just given paracetomol.
The second infusion is faster because it is given faster if there is no reaction to the first one.
I did not suffer hair loss or anything.
I think the advantage of rtx is that, if successful, it lasts 6 months or more which is a bonus. I have to go every month for the infusion type treatment that I am on though I must not complain because it has worked well for me.
It is very scarey being on these types of treatments when really the long term effects are still an unknown quantity. But in the end I don't think there is any choice if we want improvement, the alternative is pretty bad too, at least now we do have the option of having them.
Good luck Merete with what ever you decide and good luck with your treatment Barbara in Jan. Try not to worry too much, none of the treatments I have been on have caused me any problems at all.
Zena x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Merete
After failing and having adverse reactions to two anti-tnf's (Enbrel and Humira) I was put forward for Rituximab. I went to the local hospital for 9.00 a.m. and they gave me a large dose of Piriton and steroids. At 10.00 a.m. they started the infusion very slowly with constant monitoring. My Husband and Daughter came with me and they popped out to get something to eat. When they came back my Daughter said "Mum why is your ear so red" and then I realised I was having a reaction to the Rituximab and called for help immediately. The infusion was stopped straight away and I was given more steroids and piriton. They started it again but the same things happened and they decided I was obviously also allergic to Rituximab.
I can honestly say they took great care of me before, during and after the Rituximab which is why things are taken very slowly.
I have now moved on to a relatively new anti-tnf called Simponi. I have had no reaction at all and it is working better than anything else has.
To be honest I have been in so much pain previously that I am willing to try anything and did not regret the Rituximab incident as everyone reacts differently to different drugs and I really wanted to find the right one for me which hopefully I have done now.
Please don't be put off in going for the Rituximab. I am sure they will take great care of you as they know the adverse effects it can have and will be closely monitoring you.
Good luck and keep us posted.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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Barbara and Merete Good luck with starting your RTX. We are all so different that what doesn't work for one person may be brilliant for you - the doctors wouldn't suggest it if they didn't have evidence that it can work well - let's hope that you will both be the lucky ones and find that RTX does the magic trick for you. Keeping my fingers crossed for you both - Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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I saw my consultant on Friday & she thinks Rituximab is the next drug to try. Unfortunately given the side effects, I don't. Can anybody point me in the direction of websites with statistics on the likelihood of getting PML? So far all I can find is info on the FDA website, which states that out of 8,000 people on ritux for SLE 2 developed PML. I don't think a 1 in 4000 chance is that rare and am leaning towards the opinion that this drug really isn't worth the risk but I just can't find any detailed statistics. Could this be because the drug company are trying to bury the info? Let's face it all they care about is profit
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Can someone please tell me what PML is?
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Rank: Advanced Member Groups: Registered
Joined: 5/28/2012 Posts: 665 Location: Newton Abbot
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PML is progressive multifocal leukoencephalopathy There's an article here that offers a balanced view of the risksQuote:These four cases were out of an estimated population of 129,000 exposed to rituximab therapy for RA. The authors suggest that these cases point to an increased risk of PML associated with the use of rituximab for RA, with an estimated 1 case per 25,000 individuals. They say that physicians considering the use of rituximab should be aware of this potential risk; although modest, PML is associated with morbidity and mortality and this should be considered (and the patient informed of this) when choosing treatments. Sylvia xx Be kinder than is necessary because everyone you meet is fighting some kind of battle
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Rank: Advanced Member
Groups: Registered
Joined: 10/13/2011
Posts: 62
Location: Cirencester
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Thank you Sylvia, this was very useful. I am pretty sure my decision is there is no way on earth I'm going on this drug.
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Rank: Advanced Member
Groups: Registered
Joined: 4/20/2010
Posts: 153
Location: Kent
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Has anyone had good results on this drug? I had my second infusion on the 10th of December, my esr went down but now it's high again. Spoke to my rheumy nurse today who explained that maybe the steroid they give you at the time of the infusion has worn off. So I booked in to have a depo injection on Thursday. I know it hasn't been long but it gets so frustrating doesn't it, we keep pumping our bodies with all these drugs in hope that one, one day will be the one to change our life Love Lou xx I love people who can make you smile even when you do not feel like smiling. x
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