#64

[lindaincolorado]

Fri I had my 64th

I had a fill in nurse-she tried the easy place, the hand! Missed both and then got the underneath of the forearm.

[REG53]

Congrads to you on #64!

Sorry about the hand and forearm. I know how that hurts!

[MSSINCE09]

Ouch

I love when the nurses think they know best! 8) Congrats on #64! I go for #17 on thursday. Wishing you a great month.


Margret

[lindaincolorado]

I love when the nurses think they know best! 8) Congrats on #64! I go for #17 on thursday. Wishing you a great month.


Margret

Thanks Margret Hope tomorrow, #17 goes great for you

[lindaincolorado]

Congrads to you on #64!

Sorry about the hand and forearm. I know how that hurts!

Thanks REG

[lindaincolorado]

#65

last Fri I had my 65 infusion
Since Tysabri is covered completely by Medicare and my supplemental insurance I am concerned what "horrendous" copay I may have if I switch to an oral med. I find it sad that making health decisions could come down to what I can afford

[0485c10]

Hedge your bets. Now is not the time to decide, now is the time to collect information.

(Ecclesiastics 3:4):
there is...
a time to weep, a time to laugh
a time to mourn , a time to dance...

a time to collect info, a time to decide.
(honest the line was there. i read it. lol)

i'm in the same situation. gilenya gave huge price breaks for the first year--it didn't cost anything, so you have to wait for how bg-12 pricing evolves.
i have to deal with the donut hole too.

the schedule of the affordable care act (obama care's act)

2011 50% rebates for brand drugs that fall in the donut hole.
2020 donut hole entirely phased out.

as recently as a month ago, i thought some finances would prevent me from switching for 3 years. since that time i have gotten notice that the financial issues would not occur over the next 2 years, so i can switch sooner than i thought even just 1 month ago.

there is...
a time to collect info, a time to decide.

[MSSINCE09]

Sorry

Hey Linda,

I go for # 18 on thursday. # 17 went ok the crazy nurse that I had at my neuros got fired so it will be interesting to see what # 18 brings. I am sorry that medical insurance is affecting your decision on wether or not to change to an oral medication. I hope that you find the information you need.

Wishing you lots of luck,

Margret

[LL60]

Linda - that is so great that you are doing so well with the infusions. Too bad about the hand. Over the years I have learned to say no to the wrist - even when a new nurse says, oh but that's such a great vein! I ususally get mine in the under part of my lower left arm. That seems to be the best for me.

I love it when you "old timers" post about your great response to Tysabri. Please keep us posted.

Seems like just a few months ago I was a newbie. And here it is over the two year mark and Friday I go for #33.

[lindaincolorado]

0485c10, time to collect info-time to decide FUNNY; yep know I read that too I was just reminded on eMS news that Ty's efficacy rate is 70%, think this is still the highest of meds coming out, of course, need to think about side effects!

Margret, hope the new nurse is GREAT and that #18 goes smoothly Thanks for the good wishes !!

LL60, hope tomorrow's #33 goes well The nurse for #65 found the vein in the crook of my R elbow expertly some nurses are just wonderful and then there are others ...

I really think when the time comes re: switching meds I will be directed and know what to do. I am now 63 yrs old (young) - maybe I can go off meds and be FINE-

[MSSINCE09]

Ms Linda,

New nurse was great. She is so nice and actually knowlegable of the disease unlike the last one. She got me in two tries first vein blew when she pushed saline second she got in my hand and for a hand one did not hurt at all.

Going off meds seems scary. But staying on them somedays does too. You will make the best decision for you when the time comes.

[LL60]

Actually I go for #34 this morning. How time flies!

Last time they gave me a few copies of the form that has to be filled out and faxed each time so I could fill it out at home and have it all ready. I just did that and for the first time noticed it has changed. Now it is the same forma for both MS and Chron's users of Tysabri. And there are no longer 5 or 6 questions but only 3 for me to fill out.

Reading the whole thing, the nurses part and not just mine, I was struck by how specific it is on the steps that have to be done. "The patient must read the Patient Medication Guide prior to every infusion. Has the patient redceived and read the Patient Medication Guide, including the section "What should I tell my doctor and nurse before each infusion of TYSABRI?" And they check yes or not box. And if they check the box no, they have to give the patient the Patient Medication Guide and wait until they read it to proceed to the next question.

Think this has been talked about before. Most don't seem to do this. Me included. Sometimes they ask if I have ever read the booklet. And I do carry one in my infusion folder. No one EVER has asked that I have read it that day.

At least no where on the form did it ask, has this person been tested for the JC virus. Yet.

[lindaincolorado]

Fri the 23rd I had #66
chefarztfrau.de posted 3 U.S. pml cases where they had between 56-61 infusions (or months?) . I would really like to know how many people have been on Ty 50+ months so I could know the odds at this point

[Bethann4205]

Fri the 23rd I had #66
chefarztfrau.de posted 3 U.S. pml cases where they had between 56-61 infusions (or months?) . I would really like to know how many people have been on Ty 50+ months so I could know the odds at this point

I have been! The only side effect I ever had was getting a headache a couple days after the infusion. Still get one sometimes but it's not bad enough for me to quit. I also tested negative for the JCV.

[Deer In Headlights]

1 hour

I think that I am at # 32