New infusion center?

[johnsprincess]

After much debate, I had no choice but to try Ty, even though I am JCV+. I am very uncomfortable with this choice and very concerned. I had my 1st infusion on the 17th and I am not totally sure I am comfortable with the infusion center. The nurses were great, but all they did was give me the reading for the PML risk which I have seen before, hooked me up, unhooked me, made me sit for an hour, then sent me on my way.

There were no questions, no vital signs after the initial set, no verbal about the side effects or anything I should or shouldn't do.....is this how it is suppose to be? I thought the Touch program had a strict protocol to follow to catch any possible signs of PML? Should I find a different infusion site? Call my neuro? Call Biogen? Please let me know your experiences and or opinions. Thanks

[Redwings]

I thought the Touch program had a strict protocol to follow to catch any possible signs of PML?

Hi john:
Catching "any possible signs of PML" requires a clinical exam and an MRI. Certainly the infusion center isn't set up -- or expected -- to do that. That's your neurologist's job.

There are some questions the infusion center staff should ask before the infusion, but the purpose of the questions isn't to "catch any possible signs of PML," but to assess the safety of administering Tysabri based on their estimate of the current state of your immune system.

The Tysabri website lists the kinds of questions your infusion center staff should ask before your infusion:
http://www.tysabri.com/tysbProject/t...ng-program.xml.

Again, the questions aren't intended to screen for or detect PML, but to indicate whether it's necessary to contact your neuro to get further OK to administer the infusion. The staff makes their assessment about calling your doctor based on your answers. Their responsibility is to assess the safety of administering your infusion, not to detect PML.

If you have questions about the pre-infusion protocol, you can call your Biogen/Tysabri Case Manager and your neurologist. Any changes in your mental or physical status (that might suggest PML) should be reported immediately to your neurologist, not held until your infusion.

[LL60]

johnsprincess - welcome to msworld.

All I can do is share my experience. I get my infusions at a small hospital. Every single time I am asked the questions on the sheet of paper that has to be faxed to Biogen before each infusion. If they did not ask you these questions, then they are just filling it out themselves. This paper has to be faxed before each infusion. It is a different form for MS patients than the one for Crohns. I know that because by accident they gave me the Crohns one once.

They have asked me if I have read the booklet a few times, and I have, so always say yes, but they have never given it to me. My check out paperwork always has a list of side effects to look for and signs of PML.

They take my blood pressure before they start the iv and temp. They take it after my infusion also. At the place I go, they leave the iv on a saline drip the hour after the infusion.

There are only 7 others who are on Tysabri where I go so the nurses don't know a lot about it. After 33 infusions I am just now getting to where I talk to some of them a little bit during an infusion. We talk about other stuff besides the tysabri. Most always ask me how I am doing on it.

The nurses where I go run from one extreme to the other. From pretty cold, seemingly, to very friendly. No one really enjoys getting me I don't think, I am a hard stick. Sometimes taking 5 times. Of couse by now I have my favorites. Two especially.

I don't think it is the nurses job to tell you about Tysabri. Unless they really know or are with your neuro's office. I think that is your doctor's job. Or yours. I only say that because my doctor didn't really know a lot about Tysabri when I went on it. It was up to me to research it. She is pretty up to date now, but it was not like that 2 1/2 years ago.

I would maybe call and talk to your doctor's office.

It is very important to be watched that hour after the infusion. If you were having a reaction how would they know if they didn't tak your vital signs? A rash they could see or hives. But not a low pulse or high blood pressure or low blood pressure. They may have just forgotten. It happens.

[zilphia01]

for LL60

Have you tried applying heat to your hands or arms before the stick? That is what I used to do for patients with a "hard stick" history. It makes your veins enlarge. Was good for an elderly chemo patient, anyway. good luck.

[Scooter24]

I have my infusions at the VA, there are 2 nurses in the infusion center, they give everybody a hug when you come in and leave, they know everyone by name. It is almost like family there as everyone is on the same schedule so I see the same people just about every time I go.

They check my vitals and ask if everything is ok (the usual questions) then they order up the meds, they start the IV with saline and when the meds show up they plug it in. they take vitals every 1/2 hour, they also check you with a stethoscope for breathing etc. we stay on a saline drip for 1 hour after the ty finishes. you do not leave even 1 minute early.

They always ask if we need a referral to any other clinics or any med prescription renewals. They do other infusions except chemo so sometimes they get 8 or 10 people at a time but always ask about family etc. If we have any questions they get us answers and we can always call or email them between infusions for any assistance we may need.

The civilian infusion ctr I went to they did one person at a time he checked vitals twice and let me go after about 1 1/2hours and ran the ty in about 45 min.

[0485c10]

That doesn't sound like that bad of an experience & you have to take in context that people differ,nurses differ, staffing levels for the work needed to be done differs.

making a judgement on the first experience with an infusion center is too soon.

it is confusing the use the word "tysabri nurse" which confused me, i thought that meant the nurse was specially trained in "Tysabri", but it meant the nurse is trained in doing infusions of all meds...done by getting a 4 year registered nurse degree. they know how to treat all side affects of any med. and they do it well. once when i was moving stuff from the basement, i came with a red face because of it---they monitored my like a hawk during that infusion becasuse of my red face...it been a couple of hours since i had been moving stuff from the basement, who would think my face was still redder than normal?

the big thing i see wrong about your experience is for the first infusion, they have to go through a form that establishes your base line of your symptoms & this they need to enter into a computer, i believe it might go to biogen database? (given the infusion center has computers?)

I'm thinking so fast i can't type as fast as i'm thinking bummer.

I changed infusion centers once it is very easy to do. It was in part because i thought my "tysabri" nurse wasn't doing enough and i had worked at the hospital as a teenager in the kitchen and it was just depressing to me to go to that hospital as an outsider. It was easy to switch, but i didn't do it for 6 months your jumping the gun too much by evaluating your experience too much by evaluatring it after one experience.

i've had 40. at first i went on mondays to get it over with, then on wednesdays because it was better for me for transportation, then they wer booked on wednseday once and they had to schedule me for friday. i liked friday so much better because the nurses were so much more relaxed, had pleasant plans of the weekend ahead, not rushed like they were ealier in the month i did fridays fo0r a long time until just recently they asked me to switch to thursdays--that's nice too, later in the week is better. Can i come back and finish this later?

[0485c10]

I'm back. Thoughts just racing through my mind even yet. i hope they can be more organized?

1. I think it is great that you know and have an expectation of what services to receive. I'm a firm believer in an "active patient" concept. Lots of mistakes happen in healthcare that can be eliminated if patients were just active in their healthcare.

2. An active patient asks, doesn't make the health care provider guess...(like getting TPRBP after the infusion, always before,but only sometimes they do, sometimes they don't after. Ask for it to be done during the initial TPRBP because they go down for a significant portion of people using tysabri and you want to know what it does for you. They will oblige if they know that that is what you want done.

3. most if not all healthcare providers respect a patient know more about the "1" specific treatment they use as long as the patient in exchange respects the broad range of knowledge the health care provider has. Tell them you want TPRBP taken after the infusion too.

4. the 3 questions they are required to ask before every infusion is
a. have there been new or worsening symptoms since the last infusion?(since this was the first, that question would be irrelevant for you)
b.have your meds changed at all since your last infusion*(since this was your first infusion you should have done the base line form? that lists symptoms and meds. My nose was out of joint at first because i read post of people describing the nurses sitting down to go over the questions with them. For me they gave me the form and asked me to fill it out. Same thing accomplished either way.

c. have you been offered the pamphlet on the risks of tysabri and have you read it?(thats all they do for the risks of tysabri---)

Now, before they can even ask the questions i just say"NO,No,YES"

5. The idea of a "Tysabri" nurse is a marketing gimmick started by biogen to make their product more attractive. Actually its an "infusion" nurse trained to do infusions with many meds and respond to side affects of every possible or new med that comes out.(got it? its a marketing gimmick!)

6.An infusion reaction is defined as a reaction that happens within 2 hours of the start of the infusion after that its a side affect or hypersensitivity reaction. There was a woman who developed a side affect the night after the first infusion, believing this "tysdabri" nurse marketing gimmick--she called the infusion center to report the side affect to the "tysabri" nures, she did nothing. she reported it at the start of the next infusion, her "tysabri" nurse did nothing again, just started the next infusion. she reported it to the nursing supervisor, again nothing was done. she reported it to biogen who said they have no authority on how the infusion is done, they can just make "recommendations"
She finally reported it to her doc, the correct person to report it to.

(THIS WHOLE IDEA OF A "TYSABRI" NURSE IS NOTHING BUT A DANGEROUS MARKETING GIMMICK!!!!!!!! SHE/HE are INFUSION NURSES. TRAINED TO CORRECTLY INFUSE A MED INTO A VEIN, THE DIFFERENT WAYS MEDS ARE INFUSED INTO A VEIN,RESPOND TO ALL ADVERSE EVENTS THAT CAN HAPPEN WHEN MEDS ARE INFUSED INTO A VEIN...AN INFUSION NURSE....NOT A TYSABRI NURSE!!!)

7.it is very easy to switch infusion centers if there is a personality mismatch between the person and the infusion center. Just tell your doc whitch infusion center you would like to go to, the doc will have the prescription moved to the new infusion center & notify biogen that the infusion is being done else where. Biogen will call and the switch will be done. Biogen needs to be involved because when the FDA re approved Tysabri back to market they also said tysabri could not be a "stocked" item med. it can only be shipped for a specific patient for the specific amount of infusions ordered(maximum of 6). Thats why we have 6 months appointments with doc. The doc renews the last 6 month order and tysabri ships out another 6 month supply of tysabri to the infusion center the patient is going too..

I had read the FDA advisory transcripts before i switched infusion centers--so i knew this and waited for my 6 month appointment before switching(telling the doc i wanted to switch). I used the batch tysabri had shipped for me at my previous infusion center,then the next batch they shipped for me was at my new infusion center.

8. finally, you are an empowered patient! you can easily switch to another infusion center for any reason at all, you don't even need a reason to do it. but the empowered patient also has a responsibility to communicate their needs/wants to their health care provider. the INFUSION NURSE is trained to handle all adverse events for any medication she is infusing. TELL HER/HIM WHAT ISSUES ARE IMPORTANT FOR THE "1" TREATMENT YOU ARE USING.

[0485c10]

There was a 9th and finally, finally..but i couldn't remember what it was after i had typed that long response--it came back to me...

9. finally,finally. Nurses in a hospital at least, are more familiar with caring for patients severely disabled by MS....some(nurses) understand it less that patients not severely disabled by MS are getting monthly infusions, to them that would be reserved for patients visibly & severely affected by ms, not before they are severely affected. One of my infusion nurses was very against the risks of tysabri BEFORE a need for the risks are visible.
(i posted with another person who also observed this in their nurses- the nurses don't always "get" the idea of prevention well before the severly disabled part starts -hopefully that part doesn't start at all..)

i reported her to my doc and my doc must have reported it somewhere, because that nurse has not done one of my an infusion since. She still works there doing infusions, just not my infususions. Might be why they asked me to switch to thursdays?

(that nurse also had an autistic child and believed the child's standard injections caused the autism. So she did not have a good opinion of meds but the job as an infusion room nurse had good hours for a working mom. So she infused them in a hospital that is a regional center for cancer treatment. Just built another whole wing for cancer treatment. The side affects of meds for cancer treatments are worth it because they save lives. Ty maybe not so much. Polio/DPT/Measles/Ruebella ect. prevention not so much, also, considering what they had done to her child,in her belief.)

that prejudice should be going down as more and more tysabri infusions are being done, but some nurses prejudices were rather severe at first.

[0485c10]

I even bought an ipod with a tape recorder in the head phones so i could tape some of the things she was saying to me. I told my doc i do not, nor have i ever taped anyone unknowingly, but i did in this situation because she needed to have what she was telling me exposed. I'm a dangerously empowered patient. Actually having a person hooked to an IV is a vulnerable position. My father thought she was abusive--a nurse is an implementor and implements a doc's orders--and does not provide her opinion of treatments.

[LL60]

Thanks zilphia01 for the hint. I take all hints that will make it easier. They do wrap my arm in a heating pad before hand. If I get a new nurse and she doesn't do this, I ask her to. I drink a lot the day before and pretty well that morning. I also do weights to build up my arms.

One hint to pass along too, didn't even know it could cause a problem, but the very worse time I had was after having dental work done the week before and I had been taking lots of motrin on a daily basis. And a few people here brought up that that could cause a problem. So now if I get a headache a few days before I just do meditations or just try to ignore it. No more motrin for me the week before an infusion.

[johnsprincess]

Thank you everyone for your opinions I appreciate your time. I am calling my Dr. to see what her expections are for the infusion protocol and will make sure to pass along that info at my next session. I guess I fell into the "gimmick" and since I didn't know what to expect, was thinking of something totally different. I don't really want to change centers, since I chose this one for very specific reasons, and now I have some context to put it all into prospective
Thank you all again

[0485c10]

As you can tell i am very angry about the "tysabri" nurse gimmick. it has just caused confusion to people that did have an adverse event or did get symptoms of PML--they were confused at the chain of command--uncertain, they didn't know know where to go?---questions like yours needed to be asked and then answered and THEN they could act. Grrrr! i'm very angry at this deliberate subterfuge!
it wasn't just a reasonably intelligent person not understanding, it was a deliberate muddying of the waters.

and i think it belittles(does not respect) the training they had to acquire to do infusions.

when ty was re approved for market, having contact with a person trained in healthcare was seen as a big benefit for a person with ms that might not have contact with a healthcare professional for 6 months to a year--the folks talking a risk with gilenia don't have monthly contact .