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Infusions cancelled ?!

I was to have a Rituxan infusion today. I arrive only to be told my nurse was sick so they had to reschedule. So I took Prednisone, Benedetto Ext for nothing.

Beginning to feel this infusion is not meant to be. I do not want to call and reschedule. It is so stressful waiting and constantly debating wether I should or not. All the stress is just not worth it.

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Sorry to hear this. My hospital get staff to come from another nearby hospital if one is sick. I hope they rearrange it for you ASAP.

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So sorry. This sounds unexceptable to me. Your bio coordinator can direct you to a different infusion clinic.

I’m have been in both Enbrel and now Remicade infusions. Each biologic drug comes with a representative from the pharmacutical company. They contact you before you start the drug and they are available to you anytime you have any questions about the drug or your care. Sometimes they go by different names, but their job is the same.

With Enbrel my rep was a ‘care coordinator’ and with Enbrel my rep is called a ‘bio advance coordinator’ this person is the one who calls your insurance to arrange your drug, ( mine do 3 way call so I can verbally give consent for her to even talk to my insurance) they also help you arrange what clinic or hospital you go to for infusions, they put you in touch with the clinic so you can set up your appointments.

If the clinic cancels like that, I would contact your coordinator and tell them, there are usually clinics all over. I had choice of several different ones. You are not limited just to go to one. Even if you have no private insurance to arrange, the pharmacutical company always assign a rep to each person that gets a biologic

Because biologics need to be taken on a schedule it’s important not to be put off schedule. Because of this, it’s quite shocking they didn’t offer to send you somewhere else.

In my opinion a biologic is much better than steroids. Steroids stop pain but not the disease from progressing in your body, whereas the biologic can stop the disease activity by putting it into remission.

I would be very upset if I were you as this is not acceptable practice to cancel on you and not offer an alternative. I’m in Canada and not sure if you have a different system where your from.

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Complain to the hospital admin as they should have called you if the nurse had called in sick and surely there was another nurse that could have given it to you. |Sorry you have been put off again.xxx

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I’m not clear but it sounds as though you’re in the US so my experience won’t help you much. In Scotland my treatment has only ever been delayed because of problems with blood results or an infection. I go to a day unit in a major hospital, there are about five nurses who are all involved in the care. It must be complicated because there are people having different infusions

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Similar experience to you cathie , infusions are carried out in hospital and there is always alot of staff.

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I had one postponed recently but it was connected to my blood tests and soon resolved. But I heard about that before I left the house in the morning. I made a point of thanking the nurse who phoned and we agreed it was easier to resolve it then rather than have me come in and for them to send me away.

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☹️ Feel for you ! It's such a build up to an infusion I can understand you being so upset. I remember having my monthly infusions put off a week a few times due to low WBCs but that different its my body and it can't be helped.

My hospital always will get a bank nurse in to cover if nurse is sick ,I had their infusion bank nurse yesterday actually.

It's also cheaper than using agency nurses ,for the hospital to have regular bank nurses for their infusion rooms.

Hope it all happens soon for you. 🌷

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Hi there,

I sure can empathize with waiting and then it not going through, horrible. I can say however, that after being on Rituxan for more than 2 years, I would reschedule. In fact it has worked so well for me that I might just settle in and wait in the doctor's waiting room.

But seriously, please don't be afraid of this drug. I know we can all have our own unique effects but work with your doctor to ease them and try to find the right fit. After another Vasculitis episode my Dr. is thinking of changing all my meds once again, something that is common to do btw, and I am frantic he might take away my Rituxan!

So please give this valuable drug a good try, don't let one set back effect your long term health.

S

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As you say...maybe RTX is not for you? I'm sure your rheumatologist would have made alternative arrangements for the infusion if you had contacted him at the time.

In the UK if your infusion is postponed because your blood tests aren't satisfactory you are told at least 24hrs ahead.....& instructions as to what will now happen are given.

Also, pre infusion drugs are given by the Biologic nurse at the unit...on the whole I don't think RTX patients take these drugs at home as the dose you have taken has to be closely monitored in case of any reaction during infusion.

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Hi AgedCrone, I live in Canada so procedures here are a little different. My previous infusions were done by the clinic my Rheumie works in and is not a public clinic. They follow there own protocol. Something I intend to do something about.

My last infusion was done in two hours. I experienced a mild infusion reaction (not so mild from my perspective) but I made it clear I would never do a rapid infusion again. So Jointeffort arranged for another clinic to do infusion in five hours. The nurse I was to see on Wednesday called in sick so they cancelled. This was only after I had done .

Joint effort is a group that arranges funding via insurance company and MSP. She works for the pharmaceutical company. She arranged a town car on Friday to take me to clinic then home again. So it is done. This is the third round so if this does not work I am done. No more drugs. prednisone and benydryl

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My friends husband goes to a public clinic near Vancouver General Hospital and he never has had a problem with infusions there. This clinic has a large infusion room with many seats and nurses. He lives in Langley, so the only complaint is the long drive :) . PM me & I'll give you the address.

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I don't think an RTX infusion would ever be attempted here in UK in 2 hrs.

My shortest infusion has been 5 hrs, & it was after that infusion I had a chest infection. My rheumy said I must go back to 6.5/7hrs next time.

I'm quite happy to do this as on the whole I am doing well on RTX.

It sounds very "commercial" arranging lifts to & from treatment. Maybe that was the reason for such a rapid infusion....luckily I have never heard of that happening here in Private practice & certainly not on the NHS.

Luckily nurses administering Biologic infusions here are specialists in their field, they only work on chemo & Biologics after specialist training.....I'm sure they would never infuse RTX in 2 hrs!

I do hope any further treatment you are prescribed is more successful. Maybe a change of doctors is indicated?

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I have not had any success with drugs. After three years of this, I am done. The very definition of insanity is to repeat the same behaviour and expect a different outcome. I have given it enough time. But I intend to do whatever is needed to stop this practice of rapid infusions.

Lucky for me? They can do nothing to help with pain so I have no interest in being a lab experiment. So I am particularly offended by health services. I intend to go straight at the pharmaceutical industry. They are profiting from these drugs it is their responsibility. I resent my life being placed at risk for the convenience and greed of clinics.

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If I were you I'd walk away from all the health services that are causing you so much stress. You being offended only hurts you........

Take a deep breath, & see how you go when you are calm & not being upset this way.....who knows .......what is causing you pain could be the stress you are putting on yourself worrying about drugs you might not need.j

A few months of calm may put a new light on things?

Bottom line whilst you are so angry you won't get anywhere.....especially with pharma industries....even governments do not not win with them despite spending millions to bring them into line.

I wish you a peaceful future.

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