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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Dear All
Well today was the day which had been much anticipated - my first round of Rituximab by infusion. All did not go to plan.
I arrived at 9.00 a.m. and was allocated a nurse who was with me on a one-to one basis. She was lovely and I could not fault the care she gave me. The tea and toast were very welcome after an early start - we live 30 miles from the hospital. I was told it would take six hours to get through the infusion and then I would have to wait for two hours after to make sure I did not have a reaction.
We waited for a doctor to put the canula in my hand. He sauntered in at nearly 10.00 a.m. much to my nurse's annoyance. The first half hour was steroids by drip.
I was then given Piriton and Paracetemol which I then had to wait for another half an hour to work. Then the Rituximab was started. First at 25mgs. Everything was fine. I was very cold but I think it was a cold morning and there was no heating on. After half an hour and obs of blood pressure and heart rate it was put up to 50 mgs. Everything fine again. After half an hour I then nipped to the loo and it was increased to 75mgs. About five minutes after starting this I got a strange tingling sensation throughout my whole body and I started to warm up and I thought "thank god I had been so cold" but never thought any more about it. As we live too far from home for me to be dropped off my Husband and Daughter had been killing time around the town, Oswestry (it was very small so did not take long). They suddenly appeared and my Daughter sat to my right and I started to scratch my right ear. My Daughter said "Mum your ear has gone very red" and as she said that I started to feel really ill and my whole face and scalp started to burn and go very red and lumpy and my ears started to swell. They called the nurse and my transfusion was stopped immediately. The Doctor was called and I was pumped full of more piriton and steroids. My Daughter got me some wet cold paper towels to try and cool me down and they were coming off my face as hot water. It was a very strange experience. After about an hour if you looked at me it was as if nothing had happened but I was very out of it which may of course been the piriton and sterioids. They decided not to continue with the transfusion and are going to speak to my Consultant.
Googling it tonight it says 80% of patients suffer some sort of reaction on their first round so I am holding on to the hope that they will do a second round but more slowly. I feel as if I have gone ten rounds with Mike Tyson and had one too many so hopefully will sleep well tonight. I am now going to have to wait for a call from my rheumy team to see what they want to do. I should have been going again in a fortnight for a second round so who knows.
Hope you all have a good weekend.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Jackie,
So sorry to hear that you had an allergic reaction. It must have been very frightening
I hope you feel better tomorrow and the RA team come back to you also quickly
Rose x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Jackie,
So sorry to hear you had a bad reaction to the Rituximab.
Hope you managed to get a good sleep last night.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Jackie
I'm so very sorry to hear that you had such a nasty reaction. This damned RA has such a lot to answer for. It must have been very frightening and I'm so pleased your husband and daughter were with you. As you know, Jenni has had a few allergic reactions to the drugs and I'm sure she will be on with some advice (although they are away this weekend).
Hope you can manage to rest over the weekend and the consultant will be able to give you some much needed hope. You take good care.
Love Jeanxxxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Dear Jackie
Sorry to hear that you had a bad reaction- it must have been so scary and horrible.
I hope that they can get it sorted for you quickly .
Maria
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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Jackie - Sorry you had a bad time with your first shot at Rituximab. It sounds like you had a severe reaction to it. I suppose you will have to wait and see what doc says but like you say, it may be better the 2nd time around. Fingers crossed. Good luck.
Sheila x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Jackie, So sorry you had such a bad reaction to the rituximab - it must have been very scary for you, and your family. I hope you feel better today, and that the consultant can come up with some answers for you. Take care, Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Jackie,
so sorry you had this experience .. let's hope it was a one off.
it must have been very frightening for you,
i am sure you will be well monitored if you go for round two.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Hi Jackie
Hope you are feeling better now after the hospital visit and had a good nights sleep, that certainly wasn t a nice experience and hopefully it was a one off and won t happen on the next visit. I have just come off infliximab infusions, as they didn t bring down the inflammation, anyway, on my last visit after no problems for seven months I have quite a bad reaction half way through - couldn t get my breath and started coughing, so sometimes they are just a " one off ".
Hope you have a good weekend, take care.
Julia x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Jackie, hope your feeling a bit more "with it" now, you poor thing it sounds very scary! Im on infliximab infusions and on the 2nd one had an itchy rash which they gave me piriton for, but the next one was fine..The things we put our body through in our quest for a better life! Anyway hope your rheummy team ring you soon and good luck xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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hi Jackie
I'm sorry you reacted badly to the rtx.
I didn't have a good time on it at all. Felt pretty awful during infusion 1 and then had a flare about a wk after it and I felt terrible throughout to be honest.
Probs with heart rate mainly for me.
Then serious neuro problems which are RARE I know...!
I know Poppy recently had a difficult experience on it and couldnt take it more.
THese drugs are powerful and there is no telling if there is going to be a reaction or not- in all honesty the people I have met on the wards etc seem to get on fine- totally fine. a few times blood pressure drops they slow it down and thats it.
The ones who have swelling, rashes etc- they are reluctant to give it again (here anyway), just be aware of that.
I so remember that post RTX feeling so awful. I just wanted to sleep and sleep and dragged myself through each day.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Hi all
Thanks for all your comments and support. Feeling a little better now but I have slept most of this weekend. I went into work today but really had to drag myself through the day. I don't think the heavy humid weather is helping the old joints. With the amount of steroids I had pumped in me on Friday I would be expecting to be bouncing around but my joints are really painful and I do wonder if, as Jenni suggests, I am going to go through a flare.
In limbo now waiting for the rhuemy team to decide what to do. To be honest I am scared of doing another round. If it were not for the fact that I really do need to keep going and working I would knock it on the head and deal with the consequences. It also frightened my family which, with a Husband who suffers from stress, is not good.
I will keep you posted.
Jackie
xx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Oh jackie lets have a HUUUUUGGGGG!
My husband gets stressed too- I just so know what you are facing decision wise.
Go very easy on yourself.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 7/6/2011 Posts: 65
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Poor love!
It must have been extremely frightening.
I pray something can be found to curb the illness..
Love,
Amanda
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh Jackie,
Yes, how frightened you must have been. Hugs from me as well
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/6/2009 Posts: 177
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Jackie
How awful for you. you must have been really scared.
Love Shirley x
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Rank: Advanced Member  Groups: Registered
Joined: 6/18/2010 Posts: 351 Location: Herne Bay Kent
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Hi Jackie So sorry to hear that you have had such an awful time. Heres hoping the rheumy team will be able to come up with a better alternative without all the side effects.  Sue
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Rank: Advanced Member
Groups: Registered
Joined: 12/8/2009
Posts: 43
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Hi Jackie
Sorry to hear that you had a bad reaction to RTX.I had problems too the first infusion i felt weird all the way through it but kept quiet as i thought it was normal.But when i came out i felt awful light headed, bad headache, hot flushes in my face and my heart racing,I didn't feel right for 4 or 5 days.Told the hospital they weren't that bothered.So went ahead and had the next one,the consultant decided to give me half the amount this time as i'm quite small.I felt ill almost straight away and in the end came off and was told i couldn't tolerate it.What i find weird i was given piriton ,steroids,paracetamol and rtx one after the other it was all put in quickly.When the infusion was finished i was told to wait 5 minutes and i walked out on my own,strange how each hospital gives you different care!
Hope you get things sorted.
Take care Poppyxxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Poppy
Oh my God no wonder you felt so ill. They were not following the protocol on how to adminster Rituximab. My nurse had a sheet and chart and had to fill in each section with times etc and she told me it was very important not to do anything within half an hour of each stage. Before they even started they told me what reactions I might have and to tell them immediately if they occurred. I dread to think what your hospital is putting their paitents through.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 7/10/2010 Posts: 43 Location: Little Dewchurch, Hereford
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Hi - only just seen this. You poor thing - almost exactly the same thing happened to me with the first dose (last Sept), but they dealt with it differently, after a lot of panic & consulation between my Rheumy Consultant & the Haematology Consultant (because they use exactly the same drug same dose for Lymphoma , but with a different protocol at our hospital - don't ask why!)
I had oral piriton & paracetamol before arriving, then IV steroid (methylprednisolone) similar to you, then rituximab started after an hour. I was Ok at forst, and they did keep asking us to tell them if we felt strange especially if our nose itched. I started to feel a bit warm (especially my ears) after about the 3rd or 4th time they increased the rate, looked down & saw my chest looked blotchy. I called the nurse over & they went into full panic and moved me over to lie down on a bed - & got the crash trolley & shut the curtains which was a bit disconcerting!! They switched off the pump & called the Rheumy nurse to run over from the other end of the hospital where she was on a training course with the Consultants & gave me IV piriton & hydrocortisone. (Poor thing had just finished her lunch so felt sick when she got to me!) I was already starting to feel better after they switched it off before they gave me more drugs.
Anyway, the important bit is that after the Consultant strolled over as well he consulted pharmacy & had a long conversation with the Haematology Consultant. None of the Rheumy patients had ever 'misbehaved' & had a reaction before so they were all a bit thrown in the day unit. However apparently the haematology dept who have been using rituxoimab much longer are quite used to reactions, and so were able to reassure them all.
Eventually they restarted the infusion, going back to the starting rate & keeping a very close eye on me. I was absolutely fine, just a bit woozy from all the steroid & extra piriton, and able to have almost the whole dose (just about 50ml were left when it got to 6pm & the day unit shut).So apart from a very long stressful day all was OK. I'm medically qualified so had a long conversation with my Consultanty about why it was OK to restart as it didn't really seem to make sense that it would be Ok - it isn't a normal allergy but a cytokine reaction. We could only assume that once you hace reacted so spectacularly all you mast cells have released their histamine load so have no more left to release. They made the Consultant stay on the day unit for the first 40mins after restarting, and didn't let the nurse go far either!
I then had my dose 2 weeks later - with some trepidation! They gave me oral paracetamol & piriton then the methylprednisolone infusion, then IV hydrocortisone & piriton as well! All was Ok apart from a very slight rise in temp, BP & pulse which settled on it's own.
I've since had 2 more doses in March & April (Comic relief day & April Fools - are they trying to tell me something??) They still give me the much higher IV piriton dose and double steroid but again no problems apart from sl increased pulse Bp temp which settles.
Hope you get it sorted out!
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