Disaster with infusions

[Damaged]

I was given a Rituxan infusion yesterday. The nurse (Ratchet), gave it in two hours instead of five. I had crushing pain in hips and back not just during infusion but the rest of the day. I spent the entire day in excruciating pain. I am sure she did it deliberately. But I am not going to allow the second infusion to move forward. I refuse to continue at that clinic unless they guarantee I am never paired with this nurse again. I also intend to file a formal complaint via nurses association. I am so furious I am considering just stopping everything. I was better off not diagnosed. This so called treatment has been far worse than the disease.

[Judipat]

Hi,

I had to look up rituxan infusion, I'd never heard of it. I presume you have RA?

Sounds absolutely awful, do hope you are feeling better now.

I went for a steroid injection into my hip not so long ago and it was the doctor who gave it me who was horrible. He didn't explain anything or even speak to me much , even when I screamed out in pain, he just shouted.....keep still.

I've never experienced pain like it, I was traumatised afterwards.

I would definitely not have another!

Take care

Judi

[Paulajolo in reply to Judipat]

Sound like the injection was used straight from the fridge. I hardly feel it when I have mine.

Nasty man.

[Damaged]

I just got off the phone with my Rheumy. She says it was the speed of the infusion. But that does not make me feel better. I do not know if I can go through the next one. I have had nothing but bad reactions to drugs. So far the drugs have done nothing to improve my condition and have dignitary have made life worse. From ulcers to Pityriasis and now to devastating pain. Despite the dire warnings about no treatment I am beginning to think the treatment is going to be what does me in.

[Damaged]

Definitely not dignitary lol

[weathervane]

I had severe gastritis after first rituximab infusion and felt ill for 5 days after it , this was at the normal infusion rate . When had second they slowed it down , it took all day but i felt ok after it .. it maybe worth discussing this with your rheumy as it might help , im due 3rd infusion on Friday. Best wishes 🌸🌸

[Damaged]

I feel better today. My sinuses are irritated but that is not unusual for this time of year. I will go ahead with next infusion but will insist on a different nurse. We just got off on the wrong foot and stayed there.😟 let's hope the next one is not so intense.

[weathervane]

Im glad things have settled down , fingers crossed for your next one🤞🏻. Let us know how it goes 😀

[Damaged in reply to weathervane]

It is scheduled for Aug 8th. They know to slow down and I will not allow them to speed it up.

[weathervane]

Good for you !! Getting ready to get mine at a slow rate this morning as well . Why do they ever speed it up anyway ??

[Damaged in reply to weathervane]

So that we fit their schedule? With what it cost they should serve it with champagne lol

[Nitrobunny in reply to Damaged]

Yes they should serve it with champagne and a full on spa treatment including a 90 minute massage! I'm so sorry they did that to you. There's good reason to infuse many of these drugs slowly and to do otherwise I just inhumane. I hope you continue to feel better.

Best ~

S

[weathervane]

Im with you both there , but id like tea , cream buns and a foot massage . My infusion is just finished , a long day ! I feel tired but at the moment I feel well. 😀😀

[Damaged]

I suspect a little passive aggressive revenge from that nurse. She just keeps staying on that wrong foot with every interaction. But I am done being passive when it comes to health care. I now keep copies of everything and do not hesitate to challenge all drugs. I also refuse surgery. I was told by Orthodontist that I had to treat abscess but it is still fine. I happened soon a great seminar yesterday. It is on Genomics. How health care is shifting paradigms. The large pharmaceuticals are feeling very threatened by this move to individualized treatment vs one drug fits all. Functional medicine is moving towards using genetics, biometrics and labs to create targeted treatment protocols. The study results have been very promising. It is basically a marriage between technology and medicine. I learned that 23andme was founded by the wife of a Google founder. Bill Gates and Obama have the 'brain trust'. Biometrics like Fitbit are the next big economic boom. This Doctor is a Biochemist. He has been taking his own blood etc for forty years. With the computing technology at our disposal we can keep real time stats and track everything. Now despite the logic of epigenetic

it requires very radical lifestyle changes I know I will not make. But good to know for the children.

[Damaged]

I am starting to get 💡! Spa day sure sounds like more fun lol I also think chemo and Methotrexate should come with hair treatments. Bald not so beautiful 😍.

[Damaged]

Plus rushing infusion made hubby miss his golf game rofl 🤣 in fact he is afraid I will insist on another nurse and mess up his next game. Like that is the priority! But if he has to take a day off to take me for a two hour infusion it makes no sense. I fail to see how it helped anyone but the clinic. There was five of us on at one time. As soon as one patient left another arrived. Talk about money rain! That is a lot of revenue , you think they could hire more staff?

[Damaged]

It is sad that in the time I was having infusions there was nine patients doing infusions. They are all expensive drugs so why can't they hire adequate support staff. I am certain I would be frustrated if I was expected to do everything. No wonder she makes so many mistakes. The problem is , she is not to blame. She is asked to do the impossible. So I need to focus on the real problem, greed.

[optimist53]

OMG! Could you not have asked her to slow it down? I have a truxima infusion in 2 weeks and very nervous. Has the infusion helped at all since then?

[Damaged in reply to optimist53]

I fortunately, no longer have infusions of any kind. I am now on Xeljanz which is in pill form. I also do not respond to Methotrexate, so no more needles..Yahoo.

I am currently doing tax training and will be returning to work in the new year. I continue to participate in several research projects and all is well.

[optimist53 in reply to Damaged]

That is great to hear. I am interested to know how this drug works for you. Please keep in touch. Thankyou x