NeuroTalk Support Groups - Tysabri Information & Check In

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Quote:

Originally Posted by Koala77 (Post 231274)

Cherie I totally agree with you on this. Has no-one heard of anaphylaxis (as in cardiac arrest) from drug reactions?

All I can say is listen to your body. It's best to take heed now while adverse symptoms are not severe, rather than have them build up to a full blown anaphylactic reaction.

Please don't become a statistic barb. Please listen to what your body and your doctor have to say.

I'm sorry that what I'm saying is probably not what you want to hear, but some-one has to be the big bad wolf and tell it like it is.

I'm not a horrid person barb. I'm saying this because I care!

"I am already a statistic:eek:" I do not think you are a horrid person. But I also plan to listen to my doctor rather than pay any attention to advice from individuals who perhaps do not have any experience with tysabri. I am not taking this drug blindly. I am aware of the possible problems and continuously weigh the pros and cons. I may have to quit taking it. Based on the research I have done, it is not that unusual for individuals to experience some side effects or reactions particularly in the first 6 months. Or it may be a sign that I have developed antibodies to the med. I have also had experienced an allergic reaction to interferons and had too many IPIR's while on copaxone. I would rather have a reaction in the doctor's office then at home alone. That being said, I would obviously rather have no problems at all. If I have to stop taking tysabri I am out of options other than the possiblity of getting into a study where I may be taking a placebo.

I don't know anything about tysarbi but just want to say to everyone that I pray it works for all of you. Jim isn't allowed to try it due to his lowered immune system, so we stay on beta. But any study and treatment that can halt ms is worth the try if you can do it and I thank you all. What you do today will help our future ms'rs.

As of this morning, I have a theory of why my fatigue has increased on Tysabri. It can lower the blood pressure. Also, I got an elliptical machine before the holidays and use it once or twice a week for heart health.

Well, I was having a nuclear stress test for my heart function this morning. I went in without eating, but had taken my meds with water, including the blood pressure meds.

My BP was so low at the beginning of the test, (90/70) they had a hard time getting a reading. At the peak of my heart rate, it was up to 98/70. :eek:

In the past, I've needed to cut down on meds because of sleepiness. This could be a part of my current fatigue? At least I hope so. I need to call the PCP and tell him what happened and ask about cutting down.

So if you take Ty, and you're on BP meds, this is something you might want to keep an eye on.

If this is true, and the meds are adjusted, then I might really feel a lot better. :) I hope they don't find anything wrong with the heart (or anywhere else) and I can cut down on the meds that make me extra tired.

Wiz, remember when my mom had that blackout? They think she took an over the counter cold med with her bp med. This combo lowered her bp down so low that she blacked out. That's the best guess they can give. I think your right to call your pcp about this. My mom drove over 45 minutes to my sisters when she was supposed to be going to work and doesn't remember anything from that day. Scary.

Quote:

Originally Posted by ewizabeth (Post 231563)

Good advice Wiz!

I hope this helps with your fatigue!

My BP was always low ( 100/75 +-), and there's times when they re-check it because they think someone as big as I am should be stroking out and they are shocked when it's so low!

I know I'm just being a worrisome Mommy, but, don't forget to demand your Liver Tests.

I'm happy to hear Yours is A-OK, Wiz..:hug:
I hope all the other tests turn out well for you, too.

I wish you all well and hope Tysabri is your magic potion.

Quote:

Originally Posted by RedPenguins (Post 231272)

The TOUCH people have totally not been all that helpful to me, to be honest. I feel like I get a run-around every time I call. :(

Anyhow, they are booking me at a center that is NOT close to my house at all....And I live in a major metropolitan area...and that's the best they can do for me - is to send me far away...which is frustrating b/c there is a TOUCH-approved center within 2 miles of where I live - but it's "Full".

What does that mean - "full"?? It isn't making me happy that I will have to travel 30-45 minutes for this when there is one within 2 miles of my house.

~Keri

Keri

Who says it's full? TOUCH or the center? If TOUCH/MSActiveSource says it's full, then call the Center...it's not MSActiveSource's call to tell YOU they are full. That's like them telling you the hospital is full.

I have no idea what you have been told by whom, but their job is to give you a list and to assist you with the paperwork to get registered for the program if you are having problems.

What does "full" mean? They have every chair filled with a patient every hour of the day that they are open? It would be worth a visit to this Infusion Center to talk to the people there and explain your situation. That is what I would do...

I've been involved with this program since its inception, actually prior to its inception. Let me know if you need anything....

Hi Wiz

I, too, am one with low BP (same as yours 90/68 is normal for me) and always have problems with IVSM infusions. And I don't take any BP meds...that's just normal for me!

I hope all turns out ok with your tests. :hug:

Thanks RW and AV8

Well - the "story" is this -

My neuro's office used to offer infusions there - but their practice is so large - and they have over 80 patients on Tysabri - that they don't do it there, but use centers instead. I do have a hard time believing the local place is full - but it is possible I guess....I might try to call on Monday and see for myself. Of course, the local center is across the street from the neuro's office...which is also across the street from a major hospital. There is a chance it is full - but I guess that just seems hard to believe.

The rest of this email is kind of an angry rant b/c I'm so upset and feel so broken-spirited and defeated.... just needed to write it I guess....and hope that maybe someone can relate a little.

Today I finally think I made SOME progress on this whole Tysabri journey....I've been trying hard NOT to call and bug my neuro's office or the TOUCH people - but now I am seeing that if I don't follow up on everything - nothing happens. First my neuro's office sent in all of the TOUCH paperwork w/o the doc's signature. :eek: TOUCH told me they had contacted the doctor and were waiting. Well, for some unknown reason it took 2 weeks to get the neuro's signature on it. :mad: I saw neuro today actually - and was informed that the person who was handling all of that stuff is no longer with them (aka: she was fired for not doing her job correctly).

Called TOUCH today to see where we were with insurance - as they finally received the doc's signature last Friday. So the woman rattles off my benefits to me. I knew my benefits - I could recite them to anyone by heart now. She then told me that the ins co requires prior authorization. I was dumbfounded - and was just like - um - isn't that what you guys were supposed to be doing for the last week?! :confused: She told me that the doctor's office does it. Ugg. So I called the doctor's office (mind you - I was going in for my appt an hour later)....and they tell me - no, TOUCH does that. I said I just got off the phone with TOUCH - and they said it's medical stuff - the dr has to tell the ins co my medical stuff. She said no and to talk to my case manager - as this guy handles all of the neuro's patients. I called back TOUCH. I try to get my case manager - but that never seems to happen. I tell the person who was unfortunate enough to be on the phone with me (I was very upset at this point) - that my neuro's office said they were supposed to do it. TOUCH was very nice - and again explained the same thing about the medical stuff - which made sense to me! I call back neuro's office - and to be honest - I'm about 4 steps beyond upset and moving into angry - which I really didn't want - but it's just SO emotional at this point. Talk to neuro's office - repeat what TOUCH said - and the woman is like oh yeah - you mean authorization for the medicine? If I could have....well, it doesn't matter - but suffice it to say - I wanted to scream at her. I was like DUH - I just called and said that to you!! Grrrr. So she says she doesn't think they received the request from TOUCH to do that yet for me. To which I informed her that TOUCH faxed the info to them on Monday - everything all filled out - dr just needs to sign. She puts me on hold and pulls my chart - and said, "oh yeah - it's here" - Again - trying to remain calm...I ask if they planned on signing the form and sending it to Blue Shield or was it just gonna sit there forever unless I had called. She then told me, "Well the doctors have lots of patients." That was the lamest excuse I have ever heard - I'm sorry. I know the doctor has a lot of patients - but he must sign off on things daily! This was ridiculous.

I hung up the phone and just cried for 20 minutes. I didn't even think I'd be able to make it to the appt...I was so upset and just feel so defeated. And it's all "stupid" - b/c I cant start the infusions until next Friday (b/c neuro wants me clean from copaxone for a month)....but this process has been going on for 3 weeks. I guess my nerves are just beat - I know it isn't a big deal that I'm not on meds right now for the last 3 weeks - but it freaks me out. That - plus the fact that as I get closer to actually doing the Tysabri - I am nervous. Add to that that I've been in this exacerbation (which I don't know how they call it an exacerbation or flare-up if it's the first time it's happening!) - anyhow - been in this for 10 weeks. I was dx 9 weeks ago today and that is also upsetting to me. I have had 2 courses of week-long IVSM....and the symptoms get better for a week - and then they return and sometimes newer ones come, too. For me - it is a daily struggle not to feel hopeless all the time. Fortunately, there is a large part of me that is a fighter (which came out when dealing with TOUCH and my neuro's office about this whole thing)....but then there are times that I want to wave a white flag b/c I'm just SO tired already. I had my little breakdown for 20 minutes or so (and I'm NOT someone who cries - but for the last 9 weeks - I have cried)....and all I thought was "I can't do this...I don't have this in me." I hate feeling defeated like this.

Did make it to neuro's office. He asked how I was and I told him I was upset with him and his office. Then I went on to tell him how sick I've been for the last two weeks and am seemingly getting worse. He did full exam and agreed that I'm definitely declining. :( Not so happy about that. He filled out the form for the insurance company and I watched as they sent it over to them! yippy. He thinks Ty is gonna help and may be my best bet now. I know it isn't a cure - and it won't fix everything - but I really have to keep functioning by believing that it is going to help me fight this awful disease.

Sorry I ranted so much....I just feel so awful...and I wonder if this "flare-up" is ever going to end and if I'll ever be able to function again even close to how I used to be.

~Keri

Keri, Hang in there. I am hoping that tysabri does help you. I know that I am walking somewhat better and feel more energy since being on tysabri.

I also wanted to tell you that I had my first and only flare/exacerbration last March and did not start feeling better for several months. IVSM did not help me either. I was dx last April. I started to feel better afterabout 3 months but it was gradual. I still have residual effects from that flare.

I have to drive about 50 miles to receive my tysabri treatments, but I do feel that it is worth it. Now I am going to have to find drivers since they will not give me the tysabri anymore without a driver due to benadryl ivs I am receiving. It will be a hassle, but I will figure it out.

I know in the first several months that I was dx all I wanted to do was sleep and cry. I had trouble making decisions, did not want to go out, or do anything. Gradually that has all improved. I hope that you see improvements too.:hug: