Changing infusion sites---help??
 

I've been trying to get my infusion center switched to the Pittsburgh area since last Friday. I am getting the runaround from the case managers. They tell me they will call me back but of course they don't. So I call them every day:). I already have a site picked out and Biogen has the info that they need from me.

I've told them the situation with my Mom and that my next infusion in on April 9th.

How do I get them to stop dragging their feet? Any advice would be really appreciated.

Thanks in advance.:)

Oh Barb. I'm so sorry you're having a hard time. Don't give up yet! It could still work out:). :hug::hug:

JLL - Ref infusion centers in your area
 

JJ & LL,

I got it. I asked the same question about infusion centers in my area a while back.

Please ref reply to my post on TY (this) board on 3-6-08 by Riverwild. Per her, I did a google on MSActiveSource. I don't recall what number I called but it was not problem to find and they put me straight to a sup w/o my asking. They were great to me; I got all centers in every distance from here I asked for - ex 25 - 50 - then 75 miles. When you find it please post number. I should have. My bad. Good Luck Sheena:hug:

joellelee2000

Don't give up yet, hang on tight and try to calm down. I know easy said - hard to do! Below you will find a copy of a post from Lauren dated 3-2007.

----------------------------------

"...the Tysabri PI guide states on page 14: "If the presence of persistent antibodies is suspected, antibody testing should be performed. Antibodies may be detected and confirmed with sequential serum antibody tests.

Antibodies detected early in the treatment course (e.g., within the first 6 months) may be transient and disappear with continued dosing.

Repeat testing at 3 months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI® in a patient with persistent antibodies. "

laver: I have been advised that if you are pre-dosed with Benedryl or Claratin and given Tysabri at a slower drip rate, this greatly reduces any risk of an adverse reaction at the time of the infusion if the nabs are transient. Check with your dr. is my best advice and good luck!

(((((hugs)))))

Lauren"
------------------------------------------------------
I hope this gives you a bit more info.

I'm so sorry - hang on - it may very well be temp.

Good Luck Sheena :hug:

I'm sorry Barb, but maybe it will pass? Cheryl is right, there are other options to consider. Maybe you could even get into a trial for an oral treatment if the Tysabri doesn't work out?

My plan is to go back to Copaxone if necessary. I hope it doesn't come to that, but I suppose I could develop antibodies eventually.

Thanks Sheena - I missed Riverwild's reply post.

From MSActiveSource website:

"MS Support Specialists

Our highly trained MS support specialists assist hundreds of callers each day. Our extended hours mean you can contact us from the privacy of your home and rest assured that the call and services are confidential and completely free. Our MS support specialists can be reached Monday-Friday, 8:30 a.m. – 8:00 p.m. (ET), by calling toll free 1-800-456-2255."

I just called them and they were very helpful in giving me information about every infusion center within 20 miles of home.

I posted (yesterday?) about the new information on the www.tysabri.com site.

Click this link, type in your state or zip and see what comes up. You can get results in mile increments. http://www.tysabri.com/tysbProject/t...ion-center.xml

While all infusion centers listed may NOT be TOUCH certified, they will be if there's patients looking for infusion. I was the first person in my county to be infused with Tysabri and my tiny hospital ( 25 beds) was certified within a week when Tysabri was prescribed for me.


Good Luck to you and LL and let us know how you make out!:)

You have a PM!:)

# 12!!!
 

Hi everyone!

I'm in a goood mood today!

I worked all night last night, slept for 4 hours, got my sorry side outta bed and went for my infusion today.

It was # 12. It might have been the easiest one yet! I was in and out in 2 1/2 hours. They even gave me lunch and coffee!

Once again, there were no problems, no concerns. Everything went smoothly.

The nurse showed me the new paperwork they have to fill out, with the Crohns patients having their own section now. I got the new booklet too, with information for Crohns patients included in it, first copy out of the box!

I'm building a wall here at my house, with all my vials and boxes! :p

:( Can't handle living in more limbo
 

Joelle - I hope you get it worked out soon. I don't have anything overly nice to say about the TOUCH case managers. Sorry.

Barb - I hope it passes - that it was transient antibodies (don't know the right language here)....but that it will work out well. I can imagine how you must be feeling right now.

Well, I wish I had good news to report - but I don't. Again i had another day of crying and just being so upset that I could barely function. Oh, and add an anxiety attack on top of that, too.

So, I called the infusion center to confirm my appt for Tuesday morning - to make sure they will have meds, have all my paperwork, etc. The receptionist tells me that I'm only scheduled for the consult - not the infusion. I was like oh no - no way - I was told the infusion would happen...I've rescheduled my entire week, etc. She told me it was "up to the doctor's discretion" - so when I asked her how often does it happen - she said she's never seen it happen (consult and infusion the same day). I about lost it.

This of course all happened on my way to my therapist's office. LOL. I cried - but mainly I was in a silent temper tantrum I guess. Just tears falling - she kept trying to get me to acknowledge that we don't know yet whether or not it is going to not happen on Tuesday, etc.

I didn't realize it until a little while ago - but that's the thing about this - there is SOOOOOOO much that we don't know - I don't know how the disease is going to progress, I don't even know in the morning if I'll be able to walk or remember my cat's name! So this - this is something we CAN know and SHOULD know - why is it so difficult? My anxiety has been out of control - I can't just "wait and find out" - though apparently I have no choice in the matter. I think it is VERY cruel to not just give me a definite. I even asked what if I don't do it that day - then when is next avail appt - and they couldn't tell me that either.

I contacted my case mgr at TOUCH. He called the infusion people - he knows them well there - and was told by the office mgr that there are chairs available for an infusion that day for me - and that that's the reason they have me an 8:30am consult - so that if the doctor okay it - I can have it that day. Supposedly I'm pencilled in for one of those chairs. Of course, I say supposedly b/c I don't trust a thing anymore.

I'm so wiped out. Been in this exacerbation for 3 months now...dx a little less than 3 months now. I have a lifetime of question marks and unknowns in front of me.... this stuff (scheduling, etc.) should not be one of them. I've jumped through every hoop - why can't I have the meds already?!

I asked what exactly would make the doc say I couldn't do it that day - and they couldnt tell me - just that it was his discretion.

I'm very angry, hurt, upset, sad, and frustrated right now. I'm actually also petrified to go on this medication - yet I've been begging for it - and I've been mentally preparing myself for it to happen on Tuesday. But now what?!

Sorry to rant. :( I'm besides myself...

~Keri

I need help please. I thought was getting better, or maybe I should say not worse, but I was wrong. I had my 1st ty infusion on 3-18. 3-19 was a great day. Except for the numbness in my leg I did not feel any MS sx. On 3-20 I got sick and started to have a few ms sx, but they were the same as ones I had before. Well the same old sx came everyday till about Tues. On Tues (I think) I started to get new ms sx. I now have had the tingle deal in my right leg, I had a bad attack with my right hand, and I've about 4 attack with a stiffness in my jaws. I have new heard of ms hitting the jaws but I guess we have stuff there too. None of these have lasted for 24 hours but I am getting new stuff. Also my thinking is not clear and my speaking sucks. I thought I was out of the relapse. Am I or not. Everytime I think I may understand the MS deal I get confused again. If I am out of the relapse, is this the way the rest of my life will be. Please tell me what u think is going on. Is this what you mean by good days and bad ones. Does this mean the ty might not be working on me. My case is so last stage or sever till they tell me the next relapse may take me out. I am so scared. What if this is not the right drug for me. I have no where to go. I'm scared.

So sorry...
 

Sorry to hear you're struggling so much.

Just want to make a few points -

1. As far as I know: Tysabri isn't meant to stop or heal an exacerbation (none of the DMDs do that) though many people report feeling better and lessening or disappearing of sx after the first treatment - however, for some it takes several months of treatments.

2. To help with sx of an exacerbation - usually IV steroids are used. I've had two rounds of steroids in 3 months - I have been in this episode since Dec 22. Both steroid tx helped in the immediate - for 1-2 weeks after...but then my sx came back as well as new ones.
3. There are other tx available if tysabri doesn't work...but I understand your fears - I have them, too. My doc made it seem like ty was my only hope - but the more I read, the more I know that heaven-forbid it doesn't work for me - there are a few other things to try before I give up and call it quits.

I'm sorry you are experiencing new sx - I know how scary that is.

I'm not sure what you mean by last stage and so severe that the next relapse may take you out.... MS *rarely* kills - but yes, your sx could progress to the point of complete disability (bed-bound, etc). I'm not sure how fast that comes on, though, from what I've read it isn't like a train crash - not instantaneous. Also usually the sx need to last at least 24 hrs.... it sounds like you're having spotty sx all around...I have moments like that, too, where I feel numb or weaker in places overall, but it isn't constant.

I suggest letting your doctor know about these sx and ask his thoughts on an IV treatment. It's usually 5-6 days of an infusion - they take about an hour each.

Sheena, from all you've posted - I don't think you're out of the relapse....and from what I have heard from so many people, it is TOO soon to tell if you don't have Relapse Remitting MS. You need to wait and see.... I know, it stinks all around :(

I also wonder/think if maybe all of your sx are stronger right now b/c you are so sick - I know you are on antibiotics - but they take time - and often physical illness makes our sx worse - and can bring them out even when they've been gone (pseudo-exacerbation). I wonder if that is what is going - your body is just sick...and needs to rest and heal.

Just my thoughts from all that I've read. Everything is a time game...sit and wait. It stinks. :(

I hope you feel better,

~Keri

ps/I'm going to try to get to the post office today to mail you that stuff - if not, tomorrow for sure!

Thanks for the post, you don't understand. I have had 2 neuros and 1 GP who saw the mri state they all believe I have had this for years, prob 10 plus. It remained silent or too silent for me to worry about a prob. It distroyed my brain. I am very, very advanced. They all state I have no other choice then TY. If this drug does not work-nothing will help. I can't take steroids and stay on TY. This is my understanding. I don't know what is going on - I just need to understand what is going on. By take me out I do mean complete disability!

Sheena and Keri,

I've been wanting to respond to both of your postings, but don't want to bog down this particular thread with non-information or Tysabri check-in discussions. There are probably others that feel the same way.

You might want to start a new thread. :confused:

Cherie

Sheena,

Sorry your are feeling so bad! I understand about being scared. I think alot of us are. Tomorrow is my one year anniversary from being diagnosed (March 29th). I also did not have any symptoms except a little numbness on one foot which was attributed to a pinched nerve. On my first MRI they discovered several lesions and I also have one on/in my spinal cord. I only am telling you this because my neuro has not suggested my MS is severe at this point even though I have several problems.

I think Keri included alot of important information. If you are sick and on antibiotics it can cause a pseudo flare. You also cannot expect to feel immediately better after your first tysabri infusion. You can also be on steriods while on tysabri although I doubt if most neuro will prescribe them on a regular basis.

As far as being out of a relaspe I really cannot answer that one. I do know now that being in remission does not mean that all of your symptoms disappear. You may have to deal with residual symptoms and some may go away and them come back.

Also tysabri is generally only prescribed for remitting relasping MS so I am also confused about the severity of your MS.

I hope you called your neuro today. If not you should call them first thing on Monday so you can get an appointment.

Barb

Sheena

If you are having an exacerbation, you can have IVSM to treat the exacerbation. The steroids you cannot have while you are on Tysabri is the monthly pulse steriods.

I am not sure who told you that you cannot have steroids and stay on Tysabri, but they are absolulely wrong.

I too am sorry that you are not doing well. It sounds like you need to call your neuro first thing Monday morning.

Take care Sheena...and please call your doctor. :hug:

re: Severity of MS
 

Sheena -

I think you should ask your docs to clarify everything for you. My neuros said the same thing, re: have probably had it for at least 8-10 yrs based on the lesions. Several are completely black holes - no longer grey. And they wouldn't even count the amount - and the size - several were larger than 1-2cms. These don't just develop over night...showing that they've been there a long time.

My doc has said aggressive and progressive for my condition. Also, because of where the lesions are - I am most likely to be "attacked" and disabled cognitively and physically.

As for Ty being your only chance - it's fine and dandy to say that to you - but they don't know for sure until and unless you have tried something else. I know you went straight to Ty. I did copax for 1 month - but went to Ty because my doc said it was my best chance. However, if it fails - well, I'm not just going to give up - there are the chemo drugs and gasp - the interferons. I've also read that some docs are prescribing copax and rebif or avonex at the same time.

I don't know 100% about the steroids and Ty - I think you can receive some high dose steroids for a flare and be okay. Your doc and the TOUCH people should know this info.

Hang in there - and as much as you can, REST, try not to STRESS.... I def think your sickness right now is making everything worse - your body is just freaking out...

Sorry - hang in - feel better!!
And call your neuro's emergency # if you need to this w/e!!
~Keri

I made copies of Sheena last 2 posts and barb02's reply.
I made a new thread with them - for more discussion of her symptoms -
http://neurotalk.psychcentral.com/sh...ad.php?t=42334

Oh you guys are too fast LOL.

I can make copies of the newest replies and place them on the new thread if needed.

Had to have bloodwork again today for liver -- having a few problems (pain in area of liver, slight yellowing in inner corner of each eye -- may have always been there?) Also having IBS problems and I am having an ultrasound of gallbladder tomorrow morning. All of these can be side effects of tysabri. Hope they will have results of blood work prior to ty infusion on Wednesday afternoon. Will let you know what happens. The adventure continues:rolleyes:

Jeez Barb...It's time for you to catch a break! You must feel like a pincushion! Thanks for the update and please let us know how it goes for you!:hug:

Gearing up for my first...
 

Well - tomorrow (Tuesday, April Fools Day) - I am scheduled for an 8:30am appointment with the oncologist for my consultation. I was originally told my infusion would be same day - but last week I had heard otherwise, so that remains to be seen - no matter how much I begged, cried, and had anxiety attacks - no one would confirm anything other than the consult part of the appointment - nor would they tell me next available day that I could get the infusion...all they kept saying was, "It's up to the discretion of the doctor."

However, they did confirm that there were empty "chairs" available for infusions - and that the pencilled me in for one of those tomorrow morning. Of course, at this point, I don't believe anything unless I can see and touch it. :( And that's often not good enough as my vision is sucky - lately lots of double vision....and my touch - well, my hands keep dropping things.

I am working VERY hard to believe that my first infusion will be tomorrow morning some time. My anxiety has been overwhelming...as I posted late last week - this part is so unfair - it's bad enough that this entire disease has a mind of its own and I can't control it....but not to be able to know a firm time for this treatment is beyond mind-blowing at this point. This part of the MS should not be causing this much pain and problems for me. Oh well...c'est la vie.

So - since I've been so distracted by my anxiety over the possibility that I may not have the tx tomorrow - now that I'm facing it in a little over 12 hours - I am starting to get nervous.

I wonder what things would preclude me from being able to receive tx. No one will tell me. Should I eat before I go - or not. I'm not going to premedicate - but I did just buy 3 kinds of benadryls - liquid, liqui-gels, and caplets. LOL. Must be prepared. Not sure if I should take my regular daily meds (cymbalta, allegra-D) or not take them. Any advice??

My nerves are kicking in. Sigh. :eek:


~Keri

One day at a time, Keri. :hug: I hope it all goes well tomorrow. Keeping my fingers crossed for you. We will both be at the doc tomorrow at the same time. You for your first one and me for my last one (clinical trial).

Take care...rest...plenty of fluids today and tonight.

Keri!

Quit psyching yourself out! Your doctor should have told you that you could or could not take your regular meds tomorrow. Since you have an appointment at the infusion center with a doctor before your infusion which may or may not be scheduled, please ask that doctor whether or not you should take your meds.

This is the TOUCH procedure as described on the Tysabri website:

http://www.tysabri.com/tysbProject/t...on-therapy.xml

Do what you would normally do every day! Eat, drink lots of fluids, RELAX, do some of that calming therapy! After you are done, you may be tired, just from your nerves, if nothing else.

When you are up to it, come and let us know how it went. We'll be looking for you!:hug:

Just heard from my doctor and the results from my blood work and ultrasound were normal. Yeah! One positive thing I can say about my doctors is that they normally get back to me as soon as they have test results. So the tysabri appointment tomorrow is a go.

Hi There,
I'm new around here but Not new to MS!

I'm posting here today because I have been on Tysabri since Oct 06. It has been a Looong haul to say the least. I was DX in July 01. I started Avenox Aug 01 and continued until July 06. I even tried LDN for a few months. It worked great for my bladder but that was about it for Me.
I just had Tysabri #19 Yesterday and I am Living Life Again!!!!

It took several months until I started to Really feel better. I am now living a full life - well as full as possible as I still have that crappy leg that has followed me around for years but I Now have the energy to drag that crappy leg around.
I can walk So MUCH better than I did just a few months ago. My balance has improved dramatically.
A few weeks ago I was able to take a short hike down to the river and played in the water. It was such a blast!!! Just a Wish 2 years ago.
Last week one of my Dreams came true when I was able to dance like Crazy all by myself without falling over - What a night that was!!!

I know that we are all different and meds are a choice blahblahblah I know that whole spiel........but For Me Tysabri has been a WONDER DRUG!!!

I'm not here to talk Anyone into or out of Anything. I'm just here to share My experience with Tysabri. Yes - There are risks. I've always been a Risk Taker.
In the beginning I had to drive myself 275 miles each way in the winter to Portland, OR for My Tysabri treatment - Talk about Risky!!!

I'm finally getting infusions close to home now - Thank God!
As my reward after each infusion I order my favorite Thai food To Go. I call it my Ty-Thai day. I actually look forward to it as I know with each one I am doing Something Positive for Myself to fight My MeSs. And l LOVE Thai food

I may die from PML - I may not, But I played in the river and I danced and laughed and lived. I'm going to dance each and every day that I can..................

This is a copy from another board that I posted on a few months ago.
Things have just gotten better as each month goes by:p

Life is So Good,
DD~
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"If you think you can or you think you can't, you are right either way.

I did it!
 

Hi everyone -

Well, from the title of this - you can tell - I did it - I had my first Ty infusion today!

I was at the cancer center by 8:30am for my consult with the oncologist. He came in, talked to me for about 3-4 minutes. Said he's seen great results in my doc's patients (my doc and the rest of his practice send over 40 people to this site alone - being that it is right across the street from their offices!)....and that he's only seen one person "fail". This was good news. He just told me to relax....

I asked if I could take my usual morning meds - and he said yes. Then I asked if I could take my ativan for anxiety - as I don't do so well with the I/V insertion - and he laughed and said sure. I asked about benadryl - told him I had brought 3 types of benadryl with me. He chuckled again. He said they could put it in my i/v if I wanted. Then he had the nurse walk me to the infusion room.

I was first one there - being that it was only 9am at this point. My best friend was there with me. The nurse told me that she could put the benadryl in - but that it was as higher dose than you would usually get from the OTC stuff - and that it makes people sleepy. I chose to just use my liquid benadryl (bubble gum flavor). I showed the nurse the place where I've had the best luck in receiving I/Vs - as I've had 2 week-long tx of steroids - and that usually the nurses blow the veins quickly - but that last time, I made it the entire week using my hand - so she did just that. I was so pleased that she was willing to listen to me.

The room was absolutely FREEZING. I finally asked for a blanket. My friend gave me her sweatshirt which she put on top of blanket....and then eventually I got another blanket. I had a pillow behind me, the chair reclined. Very relaxing actually.

I fell asleep shortly after the infusion started (gotta love ativan for that!). I woke up after it finished. Waited a lil while longer....and then was released to go home.

As I was leaving, another woman was coming in for her 12th or 13th infusion. She told me that the Ty has not been helping her - she was wheelchair-bound and appeared to be completely disabled (had to be transferred from chair to chair using a board, etc.). I was a little too out of it to keep talking with her - and the room was getting full anyhow...so then I left.

I was home by 11:15am this morning....pretty amazing since I first got to the doc's office by 8:30am. Less than 3 hrs from door to door. (Of course, the office is literally 5 minutes from my house!)

I was also able to schedule my future Ty's for a Friday! Yippy.

My only concern is..... now don't laugh....
and this is NOT an April Fool's joke...

I feel totally fine. I mean - I feel no different - not better nor worse.

I am a little achey - though I don't know if I can attribute that to the infusion or not sleeping last 2 nights, etc.

I'm actually a little nervous - and keep joking that I don't know if the meds were actually in the I/V because I think I wasn't paying attn to the nurse when she put it in - meaning, I didn't see her put it in? She did give me the box from the meds (I asked for the lot# info, etc.). But really, I felt nothing as the meds were being infused. Is this normal?

So, now I guess I sit back and wait.......hope the "magic" happens. I guess it's also time to move into the land of the living - don't need to spend my day crying on the phone trying to get this to happen, etc. Now I can try to live - and learn to live with MS. Oh, I do need/want to schedule my next MRI for next week if I can...but other than that....

I start a program at UCLA on Monday evening. It's thru the NMSS - it's called Living Well - it's for newly dx people - and it looks phenomenal...it's 12 weeks long - and I hope to get a lot out of it.

Hope everyone is well,

~Keri

ps/it feels REALLY good to report that things went as they were supposed to for once.

Barb:

Glad to hear that everything came back ok!! I hope when they start your infusion tomorrow, you don't spout liquids like a sprinkler from all the tests you have had recently! Let us know how it goes for you tomorrow!

DaDiva:

Welcome and thanks for the report! Nothing like a good word from a veteran Tysabri user! I liked the Ty-Thai thing! Too bad we don't have a Thai restaurant here in the woods, I could DO some Thai food after I get my infusion. I usually just go shopping and eat whatever...:( I do plan on having a special do next month because it will be my lucky # 13 infusion, making it one year!!

Keri:

BRAVO!! YAY!!! You have a PM!!! LOL!

Glad it all went well for you!!:hug: Welcome to the club!

Barb: Yay!! I'm sooo glad everything is okay!! Whew!! Keri: I don't feel a thing when I get my infusion either. It's as if i'm getting 'nothin' shot into the vein LOL. I'm happy things are going better for ya!!

No more tysabri for me
 

Well, I had another reaction today. This one was the worst; so my neuro who was in the clinic and came in twice said no more. I had to be given a second benadryl iv and was put on oxygen. I made it about 40 minutes this time before I had the reaction and they had slowed down the infusion. The other two times I had a reaction I made it through the infusion before I told the nurse. I had to push the panic button because noone heard me when I called for help. They came really fast then. :eek:

I have an appointment with him (neuro) tomorrow morning to talk about the future. He is not sure what to do with me and was going to check with some colleagues at the ms center in St. Louis. I think I am going to take a time out from being a lab rat.

I'm so sorry Barb! :( :hug:

Barb,

I am so sorry to hear this. You gave it your best shot. :hug:

I would rather have heard that the staff at the infusion center were right there, though. You'd think after what you have been through prior to this infusion that they would have been much more watchful and careful with you and your life and health!

Please let us know what happens from here for you. We care and your input is valued here! :grouphug:

I think all of us should take a heads up from Barb's post about her infusion center staff not hearing her when she had her infusion and had a reaction.

Please ASK your infusion center staff what the procedure is for someone who has a reaction. Make sure they have a plan in place that ALL the staff know and follow in case of emergency and what YOUR part in getting them to YOU is.

A reaction can happen at anytime, not just at the beginning.

While my infusion has become a normal part of my life, I've never dismissed the fact that there can be a problem at some point and I made sure that I knew what I had to do if something went wrong, both during infusion and after I leave there and go home. :grouphug:

I'm so sorry things didn't work out with the Ty, Barb. :( I believe and hope that soon there may be a new med for you and many others in the same situation. I haven't been on Ty long enough to know if it will be the drug for me. RW is so right about the infusion center! You should never have had to deal with the nurse not being right there with you, especially with your prior history! I hope things get better for you soon. :)

Wow, Barb . . . I am so sorry that Tysabri didn't pan out, and very disturbed about what happened to you with no one around to watch over you. That is just not on, and I would be doin' some major complaining about their procedures there. I wouldn't want to see something like this happen again. :eek:

I visited my doc yesterday and he is very excited about our future prospects. He reiterated that we couldn't have picked a better time in history to be faced with this challenge, and I found that very encouraging. I hope your silver bullet is just around the corner too. :hug:

Congratulations, Keri! I'm glad everything went so well for you. :hug:

Cherie

Thanks everyone for your support. I have an appointment in a little while with my neuro. I receive my infusions at a neurologcal clinic. They put you in a exam room by yourself and you have the option of sitting on a hard chair or laying on a padded procedure table. The nurses station is located outside of the room/across the hallway, but it is really busy there and rather loud. Luckily they did show me where the panic button was during my second infusion. I do think they need to retrained in the tysabri protocol. My nurse usually forgets to ask the 4 questions and I had to remind her yesterday that they were supposed to slow down my infusion. I think they only have a handful of patients on tysabri and they said I am the first to have any problems. That figures! I always have enjoyed being the first in the class.:rolleyes: I sort of feel like I have been run over by a semi truck today.

I have suggested to them that they need a better and more comfortable set up, and I also listed these problems on a survey I received about my neuro and the clinic.

Just got back from my appointment and my neuro admitted he does not know what to with me. He wants me to on some type of treatment but is not thrilled with the idea of the chemo drugs. He has a patient that is going into heart failure after being on cytoxin. I am not willing to go that route at this point either. He is requesting through my insurance (HMO) a referrral to a ms center/specialists at Barnes Hospital in St. Louis. He already talked to them and they said that I absolutely had to stop tysabri; that my reactions would just get worse. He does not forsee any problems with getting the referral. So I am just going to try to destress for a few weeks and then see what the specialists think. I imagine it may take awhile to get an appointment.

Barb,

I hope that you can find a medication that helps. It may be worth your time to see if there are any MS Medication trials whithin which you can participate. Alternatively, maybe you can go back on one of your pre-Tysabri medications which seemed to work.

I am crossing my fingers for you.

-Vic

Oh Barb....hugs....
 

:hug:Hi Barb - I'm so sorry you experienced bad reactions and that Ty isn't a good tx option for you. How lousy. I do hope that the HMO will allow you to see some specialists.

And thanks everyone...I am glad that my infusion went well. I was sore yesterday - felt like the Tin Man when I woke up and needed to be oiled or something...but I fought through it and worked. Today I went to work but had to leave early (and cancel on two clients). Just feel wiped out - on top of the 'usual' fatigue I've had.

On another note, my neuro called to tell me that I'm anemic. My iron has usually been low the last few years, but not to that point. I need to call my PCP tomorrow and talk to her about it (I guess first call the lab b/c I forgot to tell them to send a copy to her, too).

I also kinda got 'called out' by my neuro - I guess his office or other docs from there read these boards. While I may have complained about the process of going on Tysabri, I'm pretty sure I've always said nice things about their openness and cooperation - in regards to everything except getting the tysabri stuff taken care of. Also, I've never mentioned names. I felt really lousy about hearing this - b/c I do like him and his staff....just some icky SNAFUs happened and I paid the price of having high stress and anxiety from it. I've actually recommended him and his office to several people now!

So, on top of being sick and already depressed, now I feel even worse. Sigh.

Well, I'm scheduled for my first Ty infusion next Wed. at 4:00. I've read of some of the problems some of you have had getting up and going with Ty, and I can say it has been a breeze for me. Maybe that is the benefit of living in a town of 60,000. Good doctors and care, but not overly large!

My neuro sent in the paperwork on a Monday. By Friday the IV center was working on my insurance, and by the next Wednesday I was scheduled for an infusion!

They have 16-20 patients on it already, so I won't be a newbie!

I'll update as I get closer, or more nervous, but right now I'm feeling good!

Glad to hear things went so smoothly for you! Let us know how it goes! :)