Crisis in health care!

[Damaged]

As many of you know, I have had quite a challenge since finally being diagnosed in 2015.

Since that date I have been through an endless array of drugs, tests and specialist. I was scheduled to do second infusion of Rituxan on Tuesday. My Rheumie is away and will not be back until Tuesday. During the last experience. The nurse not only rushed the infusion ie two hours. When I finally managed to get her attention she told me I could handle it! So basically suck it up.

The crisis, I am trying to decide weather to discontinue all medical treatment or seek a referral to another clinic.

I did a web search and discovered there were 6 deaths directly attributed to Rituxan in Ontario. All sites stress the need for close monitoring. What should have happened was an emidiate discontinuation of the infusion. This did not happen. That nurse deliberately disregarded my clear distress. I literally had tears pouring down my face. I never cry, except with migraines. That can always take me out. I had such chills my teeth were chattering and she handed me a blanket.

I am so beside myself. If I file a formal complaint or when I file a formal complaint then I am truly putting myself at their mercy. Nothing short of her sitting in that chair and experiencing it first hand , will satisfy me lol I know that is an emotional response. I simply want to ensure this never happens again. I intend to confront the private clinic regarding standards of practice as well as filling a separate complaint about the nurse. It may be the clinics practice to rush infusions but it is definitely not practice to ignore a patients distress. She showed a reckless disregard for my safety. I intend to see that that is not swept under a rug. I believe her actions were malicious and deliberate.

Ok my problem is this. If I stand up to them how can I trust anyone else?

These drugs are so very dangerous. Statistically , not a lot of people see positive results. Far too many, like me, get no benefit and terrible side effects. Despite dire warnings I was only able to get inflammation in check by stopping all treatment. I only agreed to another round because I had stopped the Methotrexate on my own. I have had endless difficulty with drugs, why on earth would they risk a rapid infusion. I am just so very angry.

[AgedCrone]

Have you asked your rheumatologist if it is the normal procedure in his clinic to rush through an infusion in 2hrs?

I'm sure different countries have different ways of doing things, but if you read on the RTX websites the shortest time I have seen recommended is 5 hours.

I do hope you get things sorted out & that you start to feel good effects of the RTX.I have now had 6 infusions & I am virtually pain free. The only negative being chronic fatigue.

But after 18 years of intermittent pain, I'll take the tiredness any day!

[Damaged in reply to AgedCrone]

I intend to challenge the clinics standards of practice. But the other issue has nothing to do with the clinic.

I have had run ins with this head nurse on three previous occasions.

The first issue came very early. Having been recently diagnosed I went straight to researcher mode. I read everything I could get my hands on. I now know the cellular biology, genetics , pharmaceutical

When I finally got her attention and told her what was happening she responded with 'you can handle it.' So despite to clinics protocol, she chose to ignore my reaction and push forward. When I recovered the next day I looked up Rituxan. This is a very dangerous drug. I believe she did it maliciously. I intend to see that she never does this again.

[Damaged]

I am done with doctors, drugs and health care. I will never allow anyone to touch me again.

[Damaged]

My Rheumy is on holiday as is my GP. I did call her the same day to tell her of my experience. She said they would ensure the next one was slower. The problem is I do not trust anyone in health care. I intend to file formal charges against this nurse. I do not trust others not to retaliate the way she did. I already suffer enough. I went at least ten years without a diagnoses. I almost wish I could go back. In my case, remission happened only after I stopped taking all the drugs. Good luck trying to talk me into anymore chairs lol

[Gnarli in reply to Damaged]

Oh bless you. I hear your anger and distress. Your reaction is totally understandable given your brutal treatment. Yes, I reckon you will feel better if you pursue that complaint against the nurse and demand a proper explanation of why your infusion was so incompetently and cruelly administered. Be kind to yourself. Wishing you better. Huge hugs

Jan

[Eiram50 in reply to Damaged]

Wow! WhAt a frightening and horrible experience. I absolutely understand you're level of anger, distrust and possibly, fear.

However, it would seem to me that this horrible experience may be down to one nurse in particular and your experiences/ relationship with her? You've mentioned previous run ins/ bad experiences with her.

Firstly, I think in terms of your experience you're definitely right to question her practice and to make an official complaint. From your description, it would seem at best, this nurse has a lack of understanding of medical procedures and her role - at worst, a complete disregard for these and overall patient care.

However, whilst I hear that you're drug resistant ( thus far) and absolutely feel like you'd be better off without medical intervention, your disease indicates that intervention may be needed to manage damage and further pain etc. I would therefore urge you not to write this off readily.

It clearly has been a very tough and challenging time but maybe it would be wiser to look for an alternative rheumy/ medical team and have a frank discussion re your history and importantly, your experiences re treatment and discuss what can be done in a way that supports your own beliefs and feelings and allows you to move forward in a positive way?

Whilst appreciating that not everyone has positive experiences and there have been recorded fatalities ( usually with complicating additional health factors, theses drugs appear to have helped more people than not .

Take care of yourself

Marie

[AgedCrone]

I resist researching what has taken my Rheumy many years to understand....unless you know & understand every nuance of a treatment being offered & know what can be expected with your own history - it's futile to worry about it.

Each case is different & will be treated in a different way by each different doctor.

I had some very nasty reactions to drugs, but my Rheumy whom I have been with for 10 years, just helped me weather the unpleasant symptoms & when they settled I went on to something different.

It is your choice whether you give up treatment, but If I were you & you really do cease all treatment I would try something like Reiki...which I used to think was a whole load of nonsense, but a friend who I respected had studied it, & I found it very calming when I was in really severe pain.

I wish you well what ever you choose to do.

[Damaged in reply to AgedCrone]

I have always been an egg head rofl I started my career as a developmental therapist. This led to an early interest in genetics. Unfortunately running three businesses is likely what has led me to chronic illness. I have had genetic screening but will now look into a targeted treatment approach. I have eight years post secondary education. I am a very skilled researcher. I now have to deprecate emotion from logic. I have been struggling to get a grip on my knee reality.

I maybe child size but not a child. I am 57 this month and have experience . I know that I am reacting to a incident but this is the straw that broke the camels back. I could not live with myself if this happened to anyone else.

[Damaged]

Thank you Eiram50, very sound advice. I will try not to over react however, the damage is done. Beginning with my GP. The issue with the nurse simply brought things to standstill. Before I agree to any other 'treatment' they will need to provide clinical evidence that it is the right treatment for me. I paid for genetic screening, the information is at their disposal. I should not have to second guess my doctors but they have left me no other option. I hate to list the number of situations I avoided by managing my own health records. I will never be passive in my health care again. Doctors have thousands of patients I only need to develop expertise on my body. That is what I will focus on. What will work for me.

I know these drugs help millions of people. They just are not working for me. My genetics easily explain why.

[Eiram50 in reply to Damaged]

I hear you.

I too am a professional person, very able in terms of research ( as are most here) but what I am not, is a highly trained, specialist medical person with great understanding of not only the trajectory of RA and associated diseases, nor medicine and general treatment of said diseases.

Although diet, natural remedies etc will support and may hold some people for a period of time, my feelings are that inevitably, some form of medical intervention will be needed.

If I were in your position, as I've said, I'd be inclined to seek out another rheumatologist where I felt heard and come together re suitable treatment plan.

Just be careful of acting in haste. And anger.

Marie

[Simba1992 in reply to Damaged]

I think you are well in your right to react and in my opinion you are definitely not overreacting. You have learned a hard lesson but I believe you are on the right track. Handing over your body and responsibility to faceless arbitary care is a big additional risk for chronicly ill patients. You are the one who should be in charge and you should be able to choose the treatment you want. It is true that in order to do this you need to educate yourself, hopefully with the aid of a specialist, which unfortunately is seldom possible. I have been able to do this and have very little symptoms and no meds at present. It hasn't been easy, but it is possible for many. I wish you all the luck. Here is a link that you may find useful in your quest in getting to know what is happening in your body.👍🏻👍🏻👍🏻

raypeat.com

[Someonesmother]

I would certainly write and complain for the complete lack of care and putting you in a dangerous and potentially life threatening situation. write to the board of the hospital and the rheumy too. I had a similar experience with an iron infusion. I explained that I have huge allergies and bad reactions to drugs so please don't run it through fast as I had never had it before. Sure enough they set up the drip and trainee came over and said OK I will open this right up and run it through fast for you. I freaked and said no way take it out now if that is your intention, and then explained why. She went back to the nurse I had spoken to who said ok we will do it at half strength. Within less than 2 minutes I was reacting very badly and then they realised I was telling the truth. Why does it take a potentially life threatening reaction before they believe you? Good luck and I hope you get some answers

[Matilda_1922]

I don't have a lot experience with this drug but a registered nurse you need to be guided by its guidelines. If it's longer than 2 hours then it should infused in that time. In the UK all infusions are through a pump. Also if they are to monitor throughout then this should be done too.

I would definitely make a formal complaint especially the nurse as it sounds like they are breaching the guidelines as well as the hospital as they maybe being directed by them too.

Hope you find what you want

I agree to reduce pain you need to take drugs that make you feel unwell for a couple of days.

[Hobbits]

Wow, what a terrible experience you went through. Seems this nurse needs to be put in check before she kills someone.

Definitely file a complaint, you may save someone else from this clear disregard for patient health.

Please keep us posted st to the outcome.

[shell911]

Hi ,

I know a lot of the RA Drugs have terrible Side Effects and everyone reacts differently to them.

Also you should not be treated badly by anyone that is Treating your Condition , I would complain too.

I know it is really difficult to decide which way to go with how to deal w/RA am in the same boat.

Let us know what you decide to do.

[MOLLy8]

Hello. I've just read your post and am horrified at that nurses behaviour. I too have struggled with RA and have refused medications. The side effects terrify me and rightfully so. I've had RA since I was 33 I'm now 63. I've had two total knee replacements which I'm am very happy with the results. I've only taken the same Non Steriodal Anti-Inflammatory Drug in suppository form. Have never had any stomache issues or side effects in the 30yrs of taking them. One in morning one at bedtime. Relieves my pain and lets me have a good nights sleep. On days of a flare up and I need a little extra I now have my medical Marijuna card and use it on days that I need it. The right variety of Marijuna I take eliminates my pain completely and I don't have a head buzz and feel I can function normally. The honest down side is my hands & feet are deformed but, I can still use them to a degree & I can walk. Diet is a key to keep inflammation down. Many RA cookbooks out there and very helpful. Sincerely know where your coming from in regards to drugs. Take care.

[Damaged in reply to MOLLy8]

I was diagnosed in July 2015. I currently have seven autoimmune conditions, non Hoskins lymphoma.

I have very severe RD but was undiagnosed for at least ten years.

I fall into the ' to late' category lol They have several labels , refractory, drug resistant, extra articulate manifestation sect

I accept that. I only agreed to a second dose of Rituxan because I had stopped MTX in Dec, it makes me feel awe full.

When I did stop all drugs my body triggered a remission.

I have reacted badly to four DMARDs and three other Biologics.

Most people have infusion reaction on the second dose so why do it in two hours. That is an issue to address with the clinic.

My issue with Nurse Ratchet is altogether seep rate. When I started having chills, teeth chattering, burning ears, excruciating pain in my hips and blinding headache. When I did finally get her attention she responded with "you can handle it". Had I realized this was the drug I would have yanked it out myself. I came home and called Rheumie. She said they would slow the next one down but that is not ok. Why in heavens name would I ever subject myself to that again.? I am not sure what will happen but I have already been in touch with the Pharmaceutical co, Joint effort, patient Quality Care services, Fraser Health and the college of registered nurses, the licensing regulators. I warned her during the last in counter that the next time we would take it to formal complaint. Because this is a private clinic it may lead to filling a law suit. I will not be satisfied until I know she can never do this again. That is non negotiable. All that remains is deciding if this means finding a new Rheumie. I would prefer not but I am ok with it as well.i am scheduled for part two Tuesday..I will post an update. Thank you all of kind words of support. I believe only people with RD know what it is like. I would love to have her take a chair. Maybe if she was the recipients she would gain some empathy. Shame on her but bigger shame on me if I do not stop her.

[GranAmie]

I too hear your anger, frustration and pain. I understand why you are set on making public that individual's actions and unprofessional disregard of your reactions to the infusion.

Despite your previous experiences I would urge you to not dismiss all medics and treatments - talk to your rheumy or seek another before opting out - please. There may still be other approaches / treatments which may help you. xx