I have been having rituximab infusions for the past 2 years .
It’s been my miracle drug , back to work 90% back to me .The problem is when they try to speed up the dose my blood pressure drops and my throat starts to itch . Last time they wanted to stop it .I literally begged them not to and just keep it ok a slower infusion rate ( which they did )
Nurses then went on to say that they wouldn’t be able to accommodate me when the infusion is given at the slower rate .Whilst I appreciate I’m taking up more of their time ( takes about 6 hours ) I need this drug to function.
Having spoke to my Rheumy nurse who’s was lovely .She suggested that I have intravenous piriton instead of oral and if that didn’t help they would have to consider another drug .
I’m very upset at this as I don’t want to try another drug as I hve found one that actually works and the thought of trialing others fills me with dread .
This works for me so well it’s just I have to have the infusion at a slower rate which I don’t think they want to accommodate
Has anybody else had this trouble ?
My next infusion is Thursday hoping it will go in my favour
Thanks for reading thus far
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Fifi2
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I had intense itching - ears, head, throat, bottom (🙈) - during my infusion when it was running at about the half full speed rate.
The nurse who was administering it stopped the infusion for about half an hour and gave me IV hydrocortisone (I’d already had IV prednisone and and IV antihistamine). The itching quickly subsided and I was able to continue.
I never got up to full speed because my BP went high, along with my temp and heart rate but I did manage to receive the whole bag. My symptoms settled once the infusion was stopped.
It’s interesting to hear how different centres approach the admin of the infusion.
Good luck with your future treatment. Perhaps your Rheumy can suggest some additional measures to help with future infusions.
Hi....I’m off for my Rtx infusion tomorrow.....when I had the first infusion 3 years ago I had a slight reaction..... Like you my throat was scratchy & I came out in hives....so my biologics nurse just slowed it down.....she said it often happens, & not to worry.
I have had that reaction once again since & there was no problem at all in slowing it down. My infusions usually take about 5 hrs now. As your rheumy nurse suggested, I have IV anti histamine prior to the Rtx.... but you will have to get her to tell the Biologics nurse who gives the infusion that is what your rheumy prescribes....in writing!
I’m sure it is not up to the nurse giving the infusion to decide that you must stop a drug that is working so well for you....just because of the time it is taking.
I know there is a shortage of nurses trained to administer Biologic infusions...but they surely can’t just take you off a drug that is working well....only to substitute somebody who could take even longer?
Don’t discuss it with the nurse .....I would speak again to either your rheumatologist or rheumy nurse as soon as possible & get them to find out what the time problem is caused by.......it maybe space in the unit...... you may have to go to a different unit...or change the time you go in for it....but dig your heels in.....after all if you stop the Rtx infusions, you will probably cost the Nhs far more trying to find another successful drug...not to mention your RA not being under control. I’m afraid we often have to stand firm and remember....your rheumatologist is in charge of your treatment....not the Biologics nurse.
Good Luck on Thursday...do let us know how you get on.
Went like clockwork thank you Mmrr...really tired now so into bed & maybe I will or maybe I won’t get up before Tuesday breakfast! I really want to watch the Eastbourne tennis ...but I doubt I will stay awake,
Hi Fifi..lllljust back from my infusion..it took 6 hrs & my nurse was happy with that. I spoke to the nurse in charge of the Rtx infusions and he agreed time was not in their protocol as a reason to stop infusions which were working. I don’t know if different units have different regulations but good for you .....stand your ground .- .if it’s given you your life back ....it’s worth a bit of a fight isn’t it ?
But what a state the NHS is in where you have to fight to keep taking a drug that is working well.
Unless of course you just got a “job’s worth” who told you that reason when she was having a bad day....unforgivable, but it can happen.
Why don’t you ask your rheumatologist if there is another unit you can go to? As you say you’ve really got to stand your ground ...so sorry you’re having all this trouble.
It doesn’t sound feasible that if you have a bit of a hiccup during the treatment but the treatment works they will just stop it .
Im sorry to hear about this Fifi , i was very ill after first couple of transfusions, gastritis, dizziness, flu like symptoms. The rheumy nurse said slower rate would help and it did! I now have the slow rate every time and there has never been an issue about it . I mention it to the doctor and tell the nurses as soon as i see them and they are wonderful. You have to stay a couple of hours long , but the nurses are there all day so it doesn’t inconvenience them really. I hope all goes well for you and this problem gets sorted as its one less stress removed, best wishes, do let us know what happens xxx
I have rituximab and piriton is always given intravenously before the main infusion. I hope you can continue to have the rtx. It’s worked well for me too.
I to on retuximab. I have always had my antihistamine through canular, and have mine done at a slow date to overcome the symptoms you mentioned. Never been told they can't accommodate me at this slow rate. These reactions only seem to have been worse since switched onto biosimily. Can your rheumatologist not request the slow rate? Hope you don't have to stop cos as you say it really works . Good luck xx
Hello, sorry the nurse is saying they wouldn't be able to accommodate you as it takes six hours. I've been in the Unit for six hours before. Where I go we have the antihistamine through the canula. I had my infusion stopped once for a few minutes, as my blood pressure dropped, which is quite normal for it to drop they said, then restarted. I agree with AgedCrone, explain to your rheumatologist. I can't see that it should be a big problem. I do hope all goes well on Thursday.
I am sorry that they have taken that attitude but at the same time it doesn't surprise me. They should administer the infusion at a slower rate if necessary and they shouldn't deny you that right. I am sorry this has happened but hopefully it will be on your file now that the Rituximab has to be infused at a slower rate. I suggest you let your Rheumy team know as they will also make sure it is on your file.
The first time I had Rituximab was in 2016. I was fine until the 4th time they upped the dose. I began coughing, then throat itchy but I thought it would go until my scalp began to feel like it was on fire. As I tried to get the nurse attention the lady in the bed across from me, yelled at the nurse is she meant to be red. The nurse saw me, I will never forget her face, she ran and the last thing I remember of the incident is the doctor lying me flat and bodies all around me. When I came through I was red and covered in a fine rash. They stopped everything. Applied a cooling cap to my head, gave me antihistamine, steriods and paracetamol. After two hours they started the infusion at a much slower rate. After that I was a mess for about 5 days. The second round they did exactly the same at a much slower rate and I had no problem. It was perfect and the best thing that ever happened to me, I had my life back until I had a wisdom tooth extraction. That turned my whole world upside down and I was sick for months and so I never received another infusion until last winter.
It was done at a different hospital. The team there told me I would have paracetamol, steriods and antihistamine via drip. Wait half hour and then infusion would start. They started late didn't finish the bag when I queried it she said oh that half is for the end of the infusion. The nurse they had assigned to me began complaining that she wanted to go home early and now I am going to cause her to be late. I have never felt so alone and horrible. She even went as far as to bring over various nurses to show them the person that was holding up the team because my infusion had to be done at a slower rate. I dose off and when I woke up I found a nurse upping the dose, when I said is everything okay, yes, fine she said. With in minutes I began the itchy throat, scalp itchy, but because of the last time I didn't wait I pressed the button. The nurse came and I told her to get the doctor which she did. Fortunately it was the same doctor I had seen in 2016. In short because they wanted to go home 'on time' they had upped the infusion at a faster rate and they had not followed protocol because the initial bag of antihistamine etc had not been fully administered.
I was so frightened that I asked to be removed from under that team. The doctor assured me everything would be okay now and he would insure they stuck to the time frame. He had to give me the rest of the antihistamine etc and then some, with a promise to keep a close eye. It meant that they had to stop the infusion for 1hrs and start again. I left and the next day I called my Rheumy nurse and let her know what had happened. When I returned for the second round everything was done as should be with a different team who were wonderful and my experience was fantastic with no issues. My Rheumy told me it is on my file and the PUI team know when I come to clinic that the Rituxuimab has to be applied at a slower rate.
All the best for next Thursday, if you don't mind please let us know how it goes.
Am reading all the letters about Rituximab as I due to start it in a week. Desperate to go on something that stops my joints swelling and helps with the pain. Have been nearly housebound for three weeks. Been on nearly all the other drugs which worked well then nausea and fatigue kicked in so had to stop. Praying that this works for me as well. Good luck with your next infusion.
Thanks Fifi2, very reassuring and great news it’s working so well for you - were you able to walk around during the 6 hour infusion with a drip stand ?
Glad all went well , sorry about uti ☹️. I had chest infections and sinus problems particularly when first started rituximab, never had uti . You are more prone to infection unfortunately so need to do all you can to avoid it , maybe need up fluids during this time or drink cranberry juice ? If I feel a cold or sore throat starting i up vit d and take 75mg every day for a couple of days . Best wishes, feel better soon.
Ps I don’t get as many infections now after 2 years !
I had exactly the same problem. Got my first infusion end of April this year and had a reaction like you with my throat, they stopped it for half an hour and gave me an anti allergic treatment into the drip, then called consultant to check if it was safe to carry on. As a result, I only got under half of the dose, second infusion was much better, and it does seem to be working for my RA, but this last 2 weeks I have had very itchy dry skin, even my head is itching. My skin feels like it is crawling. Don’t know if this is the Rituximab or sjergrens, as my eyes have been very bad for the last 5 months.
Interesting post. I am waiting for the appointment for my first infusion. My rheumy said (as I have had alergic reactions to two other biologics) that it will NOT take less than 6 hours for the first one as they wont be allowed to try to speed it up but they can slow it down to give it over as much as 24 hours. If I need it slower, they will just admit me to the hospital overnight - but they wont stop it unless they absolutely need to. She said that it is rare that they cant give the full dose, it is usually just a time issue that they have mechanisms to deal with. I have already met the biologics nurses as my last biologic was given in the same unit just in case of a reaction and they staff were brilliant. Fingers crossed I am ok with this one and it works!
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