| Roy |
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Reply with quote | #1 |
Hey Gang;  I got my second dose of Tysabri Thursday morning. Doing fine. Like I told my neuro Thursday afternoon was the only thing that I see difference is that I don't have to give myself the shot. I been having have a lot of trouble with spastic in my legs. He up the doses of zanaflex to help to try to control it. It look like it helping some. Roy  |
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| Shotsy |
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Reply with quote | #2 |
Hi Roy,
Thanks for the update.
Glad you are hanging in there.
Sorry the spasticity is causing you problems.
Glad your neuro is helping you with the increase in meds and hopeful it will do the trick.
I gave myself a shot today and it hurt like a (you know what). Why? no idea. not always like that.... oh well.
Take it easy Roy!
Lin 
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| Diana |
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Reply with quote | #3 |
Roy,
Just curious, how often do you go for these Tysbri infusions? I hope your getting through yours OK. Sheryl seemed to be fine, but we are all effected so different by the same meds.
Take Care
Diana
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| Roy |
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Reply with quote | #4 |
Hey Gang;  Sorry I haven't been around. I been busy canning and freezing stuff out of the garden. That the trouble with a garden. When the stuff start coming in. It look like it all come in at once. I'm doing fine with the Tysbri. I don't see any difference than with the Avonex. I get the Tysbri infusions once a month almost to the day. Last time I got my days mix up and went a week early. The nurse said if it was one day one way or the other she would give it to me but a whole week she couldn't do it. Roy |
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| Alita |
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Reply with quote | #5 |
Roy,
I have not been away for a while, so I have missed your updates. I must say I appreciate the info you provide. I am going on Tysabri and I have a good feeling. Any info you can share is much appreciated. |
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| Roy |
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Reply with quote | #6 |
All that I can tell you Alita is that I don't think I'm any worst but I'm no better either. I am having a lot more spastic in my legs. I'm taking baclofen and zanaflex 4 or 5 times a day but lately that don't seem like enough. What is any of you taking for the spasms in your legs? Roy |
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| Robert |
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Reply with quote | #7 |
Roy,
I used to take diazepam (generic valiium) to help all of my muscles relax better? I currently am not taking it though. You may be suffering with worse problems than I had?  
Good luck and best wishes,
Robert 
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| YouYouYou |
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Reply with quote | #8 |
Hi All,
The only thing that I'm taking to help me with all of my leg pain, which is the worst for me, is Neurontin. I seem to be poping those pills more often lately because my leg pain and burning just won't GO AWAY! I'm on my way to pick up some more tonight. CVS agreed to match the $4 refill for my bladder pills, so once I get this refill from Wal-Mart I'll take the next back to CVS. I'm terrible when it comes to saving a few bucks. 
Bye Bye
Di
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| Emily |
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Reply with quote | #9 |
Roy,
I just read your posting about having more leg spasms. Several weeks when I was in Berkeley's "office" talking to her about starting Tysabri, there were 3 people having the Tysabri at that moment. One women was complaining about alot of leg pain and bad spasms. She had been on it for 4 months or so. So I wonder if that's a common thing taking Tysabri? I read the book the the neuro gave me. It mentions possible lung infection too! Geez.
Emily
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| Alita |
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Reply with quote | #10 |
Roy,
Thanks for the update. I do not take anything for the spasms. My leg spasms are not that bad. When I had a particularly bad relapse, I was taking time-released Carbatrol. I have a tremor in my right hand (for small movement) and take clonzapham for that. |
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| Alita |
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Reply with quote | #11 |
Roy,
Have you tried Carbatrol? Years ago, I had a relapse with spasm-like symptoms. One day I was walking from my car to the train, and my right arm sort of floated upwards without me giving it "permission"  It was a very disturbing event. Picture you standing still and your arm floats up as if called to by a snake charmer. If I continued to walk, my right leg became very weak. At the time Carbatrol was new on the market and my neurologist prescribed it for me. I was on it for about 4 years, but no longer have to take it. It is a "cousin" of Tegretrol yet Carbatrol is time-released and is more effective as I understand.
I no longer have those type of spasms, but at night when I am falling asleep, I feel my body jerk. The jerk is small and I may have perhaps 3 or 4 before I fall asleep. It does not prevent me from sleeping, it is almost a part of the "falling asleep" process. If my body jerks during the night, I do not know it. I rarely have spasms during the day, yet my reflexes are sometimes hyper. Hope this helps. BTW, Baclofen did nothing for me when I took it. I think they make it out of sugar.
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| Ernest |
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Reply with quote | #12 |
Hi All ....Roy, Sheryl, Alita (Tysabri users)
My co-worker's wife who was diagnosed a few years ago (age 45?) and using Beta recently lost her site and went knumb all over. She called this morning and I talked with her a little bit to see how she is doing. I feel like a Veteran with her diagnosed a few years ago and me going on 15 years. I think she's experiencing things that I've had constantly for years and have just learned to cope with them. Bear the aches, bear the pain 24/7 and pop a few more pills. I must say I have had a FEW times that I've said to myself "Hey, I'm feelin' pretty good right now". Doc gave her the home infusions of steriods and she is getting her sight but still knumb. I've been knumb from the neck down forever and just take Neurontin for the pain. She told me she's been on Beta and her doc wants her on Tysabri (Anthem doesn't cover Tysabri, even on her policy which is better than mine). Is Tysabri paid for on your insurance? Doc told her Beta is 40-50% effective and Tysabri is 60-80%. After reading about it and the side effects (something about it causing a brain tumor) she is not doing Tysabri. I was just wondering if anyone is noticing an improvement using Tysabri? I'd like something to help me feel better NOW not 10 years from now. I want something to take away the pain, the knumbness, the terrible gate, the dizziness, the memory loss, the bladder problems, the fatigue. One thing she said to me that ran straight to my heart is "Why Me?" She doesn't understand what has happened. I could only say that all I know is I was given a crappy immune system and no one is to blame. She questions how she got it. Is it her parents fault? I didn't think so. I ask the same questions but just learn to deal with it and pray for a cure. The experts don't have an answer....Why?
Thoughts/Comments?
Talk Soon 
Diana
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| Roy |
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Reply with quote | #13 |
Hey Gang; Sorry to hear about your co-worker wife Ernest . I know that you will give her all the support that you can. The trouble with MS is it affect everyone difference. She isn't the only one would like to know how she got it. I have taken 7 infusion up to now. I can't say that I'm any better or that I would have been worst if I hadn't taken it. But I do think that I stronger than I was before taking Tysabri. I still can't walk but sometime it look like the numbness isn't as bad in my fingers as it was. I still type with 2 fingers but for the last month it look like the left hand is work better. The only side affect that I see from Tysabri and I can't really say it is from the Tysabri or not is that the spasms/spastic has gotten worst over time. I take 8 mg of zanaflex and 20mg of bacofen every 3 or 4 hours . I don't know if the cold make it worst but since it has turn colder the spasms has been a lot worst especially at night. I got a call in to my doctor. I'm going to ask him about Carbatrol when he calls be back for the spasms.
I not sure who pay for mine since I am on Medicare disability. When I find out I let you know. I ask once what it would cost me if mine wasn't paid for. I think the infusion nurse said that it would cost me $450.00 a month. That was the 26 of June when I got the first infusion so I may be off some on the price. My remember isn't as good as it use to be.
I hope that this help you. Roy |
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| Lola |
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Reply with quote | #14 |
Roy,
Thanks for your input. Knowing Medicare pays is all I need. I was just curious what we are all using to pay for these meds. Beta cost about $1500 for a month supply, so I'm told-CROOKS, but I paid $150 for a three month supply. I don't give myself a shot every other day like you're supposed to, I usually shoot once/twice a week. Since it doesn't do anything for me now, I'm not real enthusiatic about shooting. I know it's SUPPOSED TO help with the progression.
Talk Soon
Diana
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| Sheryl |
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Reply with quote | #15 |
Hey Ya'll!
It's be a while since I've been on here, and yet, I see my name (Diana's the guilty one who started it ). If I can remember everything that everybody was asking, here's a few responses.
I got my 7th infusion a couple of weeks ago - Erica (my infusion nurse) got a vein the first try, which is VERY unusual for me. So far I, personally, don't notice a difference - my hubby says that my thinking/memory is better, but I couldn't tell you. I still cannot remember a dang thing. Since I've been in 'remission' (or more to the point, the MS is hiding really, really well) for some time, I can't say that it's doing anything for me physically. I still feel the same, and that is perfectly fine. The best part, is not having to try to stick myself - I never did have any luck with that. I'm such a wuss.
I couldn't tell you if it has any immediate side affects, as I take advantage of a very, very liberal sick leave from work and go home and go to sleep - and at my boss' urging, I've got everything in place for FMLA to cover my job (which I never felt was in jeapordy).
My insurance from work (Humana) is paying for part of it, and I was fortunate to find out about NORD (National Organization for Rare Disorders), and they're paying the copay that I have no ability to take care of. It's either that, or I go unmedicated (which is also fine with me).
Diana - I don't recall anything about Tysabri causing brain tumors, but then again, I don't think that my memory has improved any, regardless of what Sam says. If I do end up with a brain tumor, then that'll be probably be blamed on my Dad, who died when his brain tumor returned, after being in a coma for a couple of years... When I first started having problems, I thought I ended up inheriting that from Dad too. I think I prefer the MS dx
Sheryl
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