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-   -   Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

ewizabeth 02-17-2009 05:18 PM

Quote:

Originally Posted by Victor H (Post 467074)
Here are the updated graphs of my physical condition after being off of Tysabri for a few months. Note that I have not started Rebif yet because a "hidden" cost has arisen, and it is as high as the Tysabri cost issue. Alas, nothing is free unless you are already destitute according to the pharmacy.

It is time to just press onward and see what can be done with the assistance programs the I listed in another thread.

At least I have a pulse and I am still able to collect data!:)

LOL

-Vic

I hope you can get the Rebif at a reasonable cost Vic. I'm glad your mood is good and you're still hanging in there. :)


Quote:

Originally Posted by Harry Z (Post 467082)
Hi Wiz,

The reason I asked was because after having the disease for some 35 years, Marg had little if any brain lesion activity. Yet her condition really slipped in the last 3 years of her life. An autopsy revealed a huge amount of spinal cord lesion activity yet they never scanned her spine...ever!

BTW, I am doing very well these days...have met a wonderful new lady friend and enjoying life again. Take care.

Harry

Sometimes I wonder Harrry, about those doctors who don't do spinal MRI's when oftentimes there are so many symptoms that would make it be the logical thing to do. :confused:

I'm happy to hear about your new lady friend and that life is good for you again. :)

Natalie8 02-18-2009 01:22 AM

Quote:

Originally Posted by Victor H (Post 467074)
Here are the updated graphs of my physical condition after being off of Tysabri for a few months. Note that I have not started Rebif yet because a "hidden" cost has arisen, and it is as high as the Tysabri cost issue. Alas, nothing is free unless you are already destitute according to the pharmacy.

It is time to just press onward and see what can be done with the assistance programs the I listed in another thread.

At least I have a pulse and I am still able to collect data!:)

LOL

-Vic

Vic, Drat! :mad: Are you telling me you are still struggling with the cost issue again? That is crazy stuff -- infuriating too, I imagine. I'm glad to see that you are still thinking positively. Thanks for sharing the graphs. Good luck getting the Rebif issue straightened out. We miss you around here. :)

Victor H 02-18-2009 11:45 AM

Wiz - My prediction is that it will work out fine, but it may take just a little more time.:)

Natalie - I think that we can resolve this issue. No worries needed. (I did stay at a Holiday Inn Express last night, so I can get this done.:D)

-Vic

ewizabeth 02-19-2009 05:07 PM

I had infusion 23 yesterday. It went pretty well but I've been in a down mood the past week or so. I think it's the lack of sunlight and exercise.

Anyway, there's this form I fill out at every appt and I listed that I've had anxiety due to work issues. So the neuro asks if I'd like to talk about it. He's such a good listener and truly cares about his patients. Anyway, he mentioned how women can talk problems out or cry to release anxiety (saying it's usually easier for them than for men to do this). So I get teary eyed and he notices right away and hands me the box of tissues. It only got worse from there, the water works were on.

He kept talking to me and it helped. But my main concern was stopping my tears. I hate it when I cry in front of anyone. :rolleyes:

Also, the nurse was having a rough day so the other nurse came in to help with my infusion. I always look the other way when they work on the infusion site because I don't want to make them nervous. I didn't notice that they started the Tysabri. She'd started me on saline then went to mix the meds. I was thinking I was still on saline. She assured me that it was the Tysabri. That's what they were doing when they were working on my arm together.

I think I'd been distracted about my work problems that have been eating at me for awhile. It scares me when things like that happen though, like it's worsening cog fog.

laurasari 02-21-2009 08:32 PM

[B][SIZE="6"][/S
I will be getting my 5th Ty infusion this week. I went for my 3 month neuro appointment after starting the drug. I am my Drs only Ty patient. Both he and I were both pleased with how I am doing.

Wishing you all well.

By the way i found out from Touch that it is a requirement that certain ?s be asked before each infusion. They said before any infusion site is included in the Touch program FDA requires they send out someone to go over the protocol. If you recal the last site i went to that was only temporary asked me no ?s barely spoke to me till I got itchy and she noticed me scratching. I am back in nj and will be infused this month at my original site.

good luck to all
laurie f

lady_express_44 02-23-2009 10:26 AM

Quote:

Originally Posted by ewizabeth (Post 468317)
I had infusion 23 yesterday. It went pretty well but I've been in a down mood the past week or so. I think it's the lack of sunlight and exercise.

Hey Wiz,

A lady on another forum started a thread this morning ... she mentioned that she's been on T for a while (12 mo, I think), and she has fallen into a depression. She called Biogen and asked if this is a side-effect for some people, and was told that about 19% reported that. She asked if anyone else has noticed the same thing, and so far one other lady has said she had to go off after a year for that very reason (otherwise T seemed to be doing her well).

Feb is always a "downer" month for me too, so you may be right that it is just a bit of SAD combined with stresses from work. I just wanted to mention it though, cause I had never heard of that with Tysabri before. :confused:

Cherie

ewizabeth 02-23-2009 11:20 AM

Hi Cherie,

I've had winter depression for about the last 5-6 years so I don't think it has anything to do with the Tysabri. It's actually not as bad this year because I haven't had to increase my Cymbalta yet. If I just get myself up and moving that seems to help. I just needed someone to give me a little nudge to do it though. I seem to fall into a self-pity mode this time of year and if I look at it objectively I can deal with it ok. The neuro helped me to do that this time. :)

Natalie8 02-23-2009 03:11 PM

Quote:

Originally Posted by lady_express_44 (Post 470027)

A lady on another forum started a thread this morning ... she mentioned that she's been on T for a while (12 mo, I think), and she has fallen into a depression. She called Biogen and asked if this is a side-effect for some people, and was told that about 19% reported that. She asked if anyone else has noticed the same thing, and so far one other lady has said she had to go off after a year for that very reason (otherwise T seemed to be doing her well).

Cherie

Funny you should mention this. I believe the Tysabri has exacerbated my depression. I've struggled with depression for almost 2 decades so I'm very attuned to any shift or change in my mood. I was doing fine and stable but I've noticed creeping depression since I've been on the drug. I don't want to go off Ty. and I cannot increase the dose of the AD's I am on (I am so drug sensitive it's a miracle I've found drugs I can tolerate). So I've started taking fish oil which has helped a lot (this surprised me!). Now I just need to get my lazy butt to the gym! Exercise helps just as well as AD's, at least in my case. After one infusion, it was particularly bad and scary--a sort of super wave of heavy black depression that seemed to come out of nowhere but the really bad stuff let up after a few days. In general, though, I'd say it has had an effect on my mood that I'm not really happy about (no pun intended!) :p

4boysmom 02-23-2009 06:37 PM

Natalie,
I have been doing Leslie Sansone's Walk at Home DVDs every morning and found they help my mood immensely! You don't have to get dressed up and go to the gym, just workout in a small room.

You really work up a sweat, and I've lost 10 lbs. since starting them. I'm better balanced, more energetic, and it is just a walking program with side steps, kicks, knee lifts, and adding arm movements. It is just paced quickly.

Anyone who needs to exercise might take a look at these!

Natalie8 02-23-2009 07:23 PM

Quote:

Originally Posted by 4boysmom (Post 470253)
Natalie,
I have been doing Leslie Sansone's Walk at Home DVDs every morning and found they help my mood immensely! You don't have to get dressed up and go to the gym, just workout in a small room.

You really work up a sweat, and I've lost 10 lbs. since starting them. I'm better balanced, more energetic, and it is just a walking program with side steps, kicks, knee lifts, and adding arm movements. It is just paced quickly.

Anyone who needs to exercise might take a look at these!

Thanks for the recommendation! It sounds great. I could stand to lose the 10 lbs that I put on from the steroids -- how come that steroid weight is so hard to get off?


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