I know you asked about this a while ago, but I just arrived at the boards and thought this might help: You may be able to get financial assistance for the infusion costs via the hospital or infusion center. My insurance didn't cover my Tysabri OR infusion (even after multiple horrible appeals) but the hospital approved full coverage for me after submitting a simple request form. Maybe that will work for you as well!

I hope all went well in your first infusion!!!!

Thanks....I did just that, sent a simple letter via fax, and my neurologist agreed to wave my co-pay portion of the infusion. I guess sometimes we just have to ask.

My first infusion took 4 sticks, and I ended up having the entire infusion through a small butterfly needle. I did get a head pain on the left front area of my head, I had a quick heart palpatation, and felt nausea....BUT all in all it was better than I thought. About 3-4 after the infusion, I had a very runny nose and congestion. Not sure if it had anything to do with the Tysabri or just a cold. Also, I am noticing small brusies on my arm and leg. Anyone know if this could be from the TY??

A beautiful sunny day here spent in a windowless horseshoe shaped infusion center that somehow always reminds me of herding cattle. Infusion was all day and draining. Nurse pokey and I got into when she yelled at me for taking my iv out. Mind you the drip was done my arm hurt from the iv and the lovely rash I get from the glue was itching. So I took it out. Just like every other time I have had an infusion and it was painful. If it is in a spot that doesn't hurt I will leave it in.

But its done and over til next month. Doc appt allready sched for next week to treat the monthly sinus infection and uti from todays infusion and life goes on.

Congrats on your quick thinking AND the co-pay win!
FYI: The infusions definitely get easier. I thought it was just me, but the more time I spend in chat rooms and on boards the more I see we seem to share this experience. I used to get tired and achy afterwards, but this diminished rapidly. I'm on month 8 now, and I'm hardly phased at all (though I do pamper myself for the 36 hours following!)
I have never seen anyone mention small bruises following infusion (except at IV site) but perhaps someone else can answer to that.

All my best!

DARN!!!!!!!!!!!!!!!!!!!!!!! I was really hoping you would be negative. But, you're right, Grammie, the plus side of the infusions makes it all worth while. You're such a inspiration to all of us.

love and hugs,
Shayna

Clarkstar, I premedicate with benadryl 30 minutes prior to an infusion. It helps me a lot!!!!!!!!!!!!!!!!! Itching is a problem for me all of the time. I would never make it through an infusion without my benadryl My side effects include fatigue, headache, pain in my arms and legs.....sometimes I feel slightly feverish. The side effects for me last anywhere from a couple of day to a week. But, usually they are only there for a few days

My infusion center doesn't like to do blood work either I have to beg to have my blood drawn. If they don't do it every 3-4 infusions I go to my dr and have them do a blood test for me.

good luck!!!!!!!!!!!!!!!!!
Shayna

I'm finally home again after spending time in California with my grandchildren. I love the time I spend with them and hate the computer withdrawl I always have in California....LOL I may have over done it a bit this time. I arrived home 5 days ago with another sinus and double ear infection, completely exhausted, having difficulty walking and talking.....these are "normal" for me when I over do it

I canceled my infusion....don't remember which # it is.....for last Friday and have rescheduled for this coming Friday. An infusion and the side effects were just too much for me to handle I'm feeling much better today. The antibiotics have finally kicked in and I can walk and talk again because now that the infections are under control my m.s. isn't worse and I'm well rested. One day I'll learn to pace myself better.....yeah, right...LOL It's just that I only see my grandchildren every 6-8 weeks now. So, when I'm with them I try to spend as much quality time as I can and make it last as long as I can. I know I shouldn't have stayed so long but I needed my "extra special huggies" more than I needed anything else

I hate leaving California but, there is no way we could move there right now. The older grandchildren...ages 17, 19 and 22...don't really need me all of the time but the 2 little ones...ages 4 1/2 and just turned 6....need a grandma!!!!!!!! I wish their other grandmother was involved in their lives.

I can't believe I don't remember how many infusions I've had!!!!!!!!! It will come back to me later

It's raining here in the desert. I think I'll have some more tea

huge hugs to all,
Shayna

Fri I had my 53rd infusion-this time I didn't even have the bit of headache I had had the couple before.
Still very thankful for Tysabri
Linda

I got the infusion with the usual bit of fatigue that day and next day but no other troubles...

I also got a bill from the hospital for $10,608 a few days before that, so something seems to have gotten confused between my insurance company so I've left a bunch of messages and will have to follow up on that!

I'm at an HIV medical conference and am going to talk to some neurologists here who have been dealing with PML through the years, to see if they can help informally speculate on things to consider for those of use doing tysabri while antibody-positive for JC virus...

best to you all,

JD

It is three weeks today since I had my first infusion. But, now for the past 4-5 days, I have had very red irritated, watering eyes, burning/tingling/aching down my right arm, burning mouth, extreme fatigue, vibrating sensation in my left buttocks and down my thigh, as well as a severe migraine for 4 days straight, and this feeling of an internal tremor (I have never had this before) it is from my brainstem area to my stomach....like I am shaking inside.

Do you think this is a Flare? or a reaction to the Tysabri? about one week after the infusion, I had a irritated, runny, congested nose...and off and on abdominal cramps (that lasted about a 5-6 days)