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Old 02-19-2009, 05:07 PM #1
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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.

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.
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Last edited by ewizabeth; 02-19-2009 at 08:56 PM. Reason: Had to clarify one thing.
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Old 02-21-2009, 08:32 PM #2
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[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
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Old 02-23-2009, 10:26 AM #3
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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.

Cherie
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Old 02-23-2009, 11:20 AM #4
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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.
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Old 02-23-2009, 03:11 PM #5
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Originally Posted by lady_express_44 View Post

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!)
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Old 02-23-2009, 06:37 PM #6
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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!
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Old 02-23-2009, 07:23 PM #7
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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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Old 02-23-2009, 07:48 PM #8
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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!)
I have SAD in Feb every year, so even if it was due to a drug I was on, I'd probably not even figure it out till mid-Mar.

Hopefully the sunshine and flowers of upcoming Spring will improve our state of mind.

Cherie
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Old 02-26-2009, 08:45 PM #9
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Default Treasure trove of Tysabri (Natalizumab) Info to be presented at AAN 2009

Click the link

http://www.aan.com/go/science/abstracts

Login as a guest and type in Natalizumab in the search box at the top. In general, the data in the abstracts looks very positive and 1 of the abstracts on page 4 discusses a test (assume blood) that may correlate with immune function - maybe they will have a blood test to identify those at highest risk for PML.
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Old 03-02-2009, 11:45 AM #10
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Hey everyone! Hope y'all are doing well!
I missed # 24 Thursday after holding a perfect record up to now.

With all the stuff I have going on, the doc and I decided that I'll get # 24 at some point in the next few weeks after we are sure all the bugs are clear from the ruptured appendix.

I'm on heavy duty antibiotics and other meds and since there is no precedent for some of what I have done in the past week or so, we don't want to add any more problems to the mix!
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diagnosed 09/03/2004
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