NeuroTalk Support Groups - Tysabri Check In, Support and Information Part Three

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First infussion this month

Quote:

Originally Posted by shayna (Post 838460)

i'm so sorry i've been mia for such a long time!!!!!!!! It's been one thing after another for me :(hi my name is kathy from nv.

Sally, i had infusion #52 yesterday. That means that yesterday and today i have my "normal" side effects: Headache, fatigue, stomach ache and nausea. But, i know i'll feel better in a day or two. Ty has done wonders for me since i'm no longer in a wheelchair and i'm able to walk ....as well as run a bit and play with my grandchildren.

I was tested again for the jcv antibody and i received the results yesterday...it was negative ....yeah :) when i was leaving the office after my infusion my neuro told me there are studies being done to try and replace myelin. Yesterday was a great day for me. The biogen rep was in the office during my infusion and he came and talked to me. I've been so worried about next month and turning 65. It means that i will go on medicare and so far i haven't received any info from medicare or the secondary insurance i should have :( he told me to call biogen's 800# and speak to the district manager for nevada. He assured me that biogen would not let me be dropped from the touch program simply because i may not be able to pay the 20 % that medicare does not cover.

When i called biogen today i was told that they will try and do everything possible to see that my next infusion isn't delayed because of the transition in my medical insurance. The only real hitch is that i still have not received any info from my secondary insurance. Biogen told me to call their office again as soon as i receive my info. They are going to contact medicare in the meantime and see what they can do. Apparently, there are senior citizens who pay $10 for each infusion and biogen takes care of whatever amount their insurance does not cover. Biogen really needs to let more people know about this!!!!!!!!!!!!!!!!! I've been so stressed waiting to hear from medicare and my secondary insurance.

2012 is going to be better than 2011 !!!!!!!!!!! It has to be...lol 2011 was difficult not because of m.s. But, because i can't seem to stay infection free: Bacterial, viral and fungal :( i had shingles a few times last year and that delayed my infusions slightly. The topical yeast infections and my constant sinus infections don't delay my infusions they just make me miserable...lol

for anyone who is having a problem with their infusions the only thing i can recommend is being very well hydrated. Not just the day before the infusion but, also prior to the infusion as well as the remainder of that day. I've found that the more hydrated i am the easier it is for the nurse to hit the vein on the first try. Prior to my infusion i try to drink at least 4-6 glasses of water. After the infusion i drink as much water and broth as i can get down. It really helps with the side effects ...at least for me. I still have side effects but, they are not as severe. I've also learned that tea is a big no no the day prior to an infusion as well as the day of an infusion. It makes me more dehydrated and no amount of water seems to help :( i learned this the hard way because 2 months ago the infusion nurse almost sent me home after 1/2 hour of trying to decide whether or not she would be able to hit the vein. I didn't want to leave without my infusion so instead of having her gently touch the vein to make it pop up i started pounding on my arm and that sucker finally came up enough for her to start the i.v. As much as i love tea i avoid it now prior to an infusion. I learned after yesterday's infusion that tea is not a good idea after an infusion. I was hoping a glass of tea would help settle my stomach. It didn't :( however, it did keep me awake and i really wanted to fall asleep.

Congrats to those who have tested negative for the jcv. Anyone who is suffering with shingles i can empathize with you. Try not to let it get you down. Ask your infusion center if they will keep a vial in their office for you so that you can get the infusion as soon as your neuro gives you the ok. They must have ordered it in advance. So, it seems silly for them to return it to biogen.

Happy 2012 everyone.

Hugs,
shayna

hi my name is kathy ,i am going to have my first infussion this month. I am 64 the touch program put me on the 10 payment do to my imcome. I just asked them if they had any programs for less imcome people. I too will be 65 this year. I sure would like to be able to talk to someone near me in carson city nv. Take care kathy

Quote:

Originally Posted by shayna (Post 734630)

Grammie, I hope you receive your results soon and they are negative!!!!!! I hope we all test negative!!!!!!:grouphug:

I've tried waiting 6 weeks between infusions. I found it hard not to have them every 4 weeks :( Good luck tomorrow.

hugs,
Shayna

Glad to hear positives from Tysabri.

Question to those who have been on it for short term....or long term.

How have your liver enzyme tests been? I was on rebif but had to get off it because of liver concerns. Am considering Tysabri if I am JC Virus negative. Thank you and good luck to you all.

Hi Kathy,

I live in Southern Nevada...not anywhere near you in Carson City :(

I've spoken with Biogen again today. They will be giving me a complimentary dose of Ty in February since I will not have any info about my secondary insurance. I do have my Medicare ID # but, that isn't enough. In order to bill properly they also need my secondary insurance ID #. I won't receive my ID card from the secondary insurance until the end of February or the beginning of March.

Kathy, the TY rep for my neuro did tell me that Biogen will work with all of the Ty patients who cannot afford the infusions. All I know is that there is a special program. I have no idea how they decide who qualifies. I'm taking this one step at a time.

This is a great group not just for support but, also for info, Kathy. Please let us know how you're doing and what you learn.

hugs,
Shayna

Quote:

Originally Posted by kadi1805 (Post 838796)

Hi Neuryoman,

My liver enzyme tests have all been normal :)

Good luck!!!!!!!!!!!!!

hugs,
Shayna

Quote:

Originally Posted by neuryoman99 (Post 839405)

welp, my insurance (medicaid) was cancelled as of Jan 1 so no more tysabri for me, for probably 6 months, which is the wait time until i can get insurance again. cigna told me MS is an automatic denial

Quote:

Originally Posted by clarkstar (Post 839675)

Have you spoken to the patient assistance program? They seem to be working with people to find solutions.

In my case, they offered to give me the vial for a co-pay of $10.00 but it still didn't help me, since it's the co-insurance and deductible I have a problem with. Their giving me the drug only freed my insurance co. from having to pay for the drug, but I am still stuck with the huge bill for the first infusion every year, so I told them to save it for someone who truly will benefit from their assistance.

I am evidently not eligible for a reduced rate from the infusion center despite having been turned down by the state medicaid program, so I went on a payment plan with the hospital where I get my infusion. I'll be paying 10% of my monthly income from now on unless something changes.

It hurts, but it's worth it for me to make sure I stay where I am rather than going down the tube!

Please call your caseworker and let them know what is happening with your insurance. They can help.

Quote:

Originally Posted by neuryoman99 (Post 839405)

Hello neuryonman and welcome to our Tysabri thread!

I get liver function tests every three months when they do my bloodwork. They are a little off when they do the workup after infusion, but if done prior to infusion, the results are normal. I don't have any problems and my doc hasn't told me to change anything so he's not worried about the results either.

Let us know how it goes for you!

Shayna!

Good to hear that you tested negative! It does give you a modicum of relief, doesn't it?
Just remember to remain vigilant for any changes, as usual.

The advice about hydrating is good!

I always forget to drink water anyway, and I've taken to carrying a bottle of water around with me 24/7 now, and I find that not only do I remember to drink before my infusion, but have increased my fluid intake all around. I feel a lot better when I am hydrated. I was into the habit of drinking a few cups of coffee a day and sort of forgetting to drink anything else!

Quote:

Originally Posted by Riverwild (Post 840020)

i did what youu advised, thanks. i qualified to get the drug for free and $100 towars the infusion coosts. now i have to see what the total infusion does cost to see if i can afford it. ccant belive the medicaaid program just leavs us high and dry like that

Quote:

Originally Posted by clarkstar (Post 841190)

I got the first one and only recection I seemed to get was just tired the first night. I am on the 10 dollar payment plan with the Touch program. I am still working and want to keep working in to next year, god willing I can. I will be 65 this year but I am not going for medicare until I no longer work. I am going to file for my social sec, at the end of the year. If I wait tell I am 66 I will only get 30 dollars more, so I want to be ahead of the game.I joined the community center swim class and will be going twice a week. I am trying to fit more activity in my life to hopefully gain more engery. I hope this med can help me to be able to walk my dogs more. My spascity in my legs is what get to me and my hips. Does anyone have the hip problems when walking?And I hope now that I am on a program of meds that it is not to far in to MS to help. I asked my nero on Thurs. how many lessions I had so he looked at my latest MRI as of Nov. 2011 and he counted 15 lessions, with some others that were fading out. Not sure does that mean I have had lots of relapes? Sure would like some answers , the neros dont seem to say to much unless you push for answers. Kathy