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Tysabri
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At Royal Preston Hospital waiting to go in and start the Tysabri- big whoop! π³π³π³π³π³πππππππ
Waiting to go in π³π³π³π³π³ππππ
Waiting to go in π³π³π³π³π³ππππ
janetb1968
in
My MSAA Community
4 years ago
If you have a Tysabri infusion coming up what are you wearing, mask, a layer to strip off and put in a garbage bag before you ride home?
Going to
Tysabri
infusion in Chicago at RUSH.
Going to
Tysabri
infusion in Chicago at RUSH.
68degrees
in
My MSAA Community
4 years ago
Tysabri
I was curious if anyone who is on
tysabri
MS infusion always gets worse a week before the infusion
I was curious if anyone who is on
tysabri
MS infusion always gets worse a week before the infusion
Happytra
in
My MSAA Community
4 years ago
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Brief Overview of My History Past Year Posted 11 Months Ago and Today!
My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to
Tysabri
(I appear clinically like I have leukemia/lymphoma) due to the drastic effects of
Tysabri
working like its βsupposed β to.
My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to
Tysabri
(I appear clinically like I have leukemia/lymphoma) due to the drastic effects of
Tysabri
working like its βsupposed β to.
MyNameIsVictory
in
My MSAA Community
4 years ago
is there a connection between tysabri and PD
I took
tysabri
for at least two years and now am suffering PD and MS! Is there a connection to the drug?
I took
tysabri
for at least two years and now am suffering PD and MS! Is there a connection to the drug?
Chloeandcarolyn
in
Cure Parkinson's
4 years ago
Starting Tysabri
First injection Friday morning. Scared. Nervous. Excited. Ready. Need this to work. Been off DMT for two weeks now and wasnβt happy about it, but understand itβs part of the routine when changing. And honestly been feeling GREAT the last two weeks π€
First injection Friday morning. Scared. Nervous. Excited. Ready. Need this to work. Been off DMT for two weeks now and wasnβt happy about it, but understand itβs part of the routine when changing. And honestly been feeling GREAT the last two weeks π€
kandykone1
in
My MSAA Community
4 years ago
Pros cons tecfidera
DMT I am leaning toward but I was also considering
tysabri
.
DMT I am leaning toward but I was also considering
tysabri
.
kandykone1
in
My MSAA Community
4 years ago
Autohemotherapy
I took
Tysabri
infusions for over a year before replacing it with AHT. Now I've got PD, a neural disease distinct but similar to MS. I don't have MS signs other than dominant-hand tremor. My only physical complaint is a sore butt from hemorrhoids. I'm hoping AHT will treat this also.
I took
Tysabri
infusions for over a year before replacing it with AHT. Now I've got PD, a neural disease distinct but similar to MS. I don't have MS signs other than dominant-hand tremor. My only physical complaint is a sore butt from hemorrhoids. I'm hoping AHT will treat this also.
kaypeeoh
in
Cure Parkinson's
4 years ago
Tysabri and hair loss?
My doctor said it isn't
Tysabri
and may be stress.
My doctor said it isn't
Tysabri
and may be stress.
Bkboo
in
My MSAA Community
4 years ago
Bradykinesia
After two years on
tysabri
infusions they said maybe it's PD. I never felt I had either condition. Six months ago I planned to run the local marathon; The Run With the Wild Horses in Sweetwater County, Wyoming. It's a difficult race at 8000ft altitude with no level areas.
After two years on
tysabri
infusions they said maybe it's PD. I never felt I had either condition. Six months ago I planned to run the local marathon; The Run With the Wild Horses in Sweetwater County, Wyoming. It's a difficult race at 8000ft altitude with no level areas.
kaypeeoh
in
Cure Parkinson's
4 years ago
First tysabri infusion 2marr ππΆππππ
4 hrs.up, 4 hrs. Back, 2 hrs. Infusion I guess??? Then 1-2 hrs apptmt. Anxiety is higher than I can climb!!! Climb???π positive 4 antibodies and that sux but I guess we'll see what 2marr will bring!?!
4 hrs.up, 4 hrs. Back, 2 hrs. Infusion I guess??? Then 1-2 hrs apptmt. Anxiety is higher than I can climb!!! Climb???π positive 4 antibodies and that sux but I guess we'll see what 2marr will bring!?!
Fattius
in
My MSAA Community
4 years ago
Just joined
Only had brain MRI and 5 lesions.... now I'm on
Tysabri
, going on my 4th year...it seems to be working.
Only had brain MRI and 5 lesions.... now I'm on
Tysabri
, going on my 4th year...it seems to be working.
DawnGochenour
in
My MSAA Community
4 years ago
Coronavirus Preventative Guidelines-revised
CDC and NMSS stated that virus is at a higher risk for people on MS infusions (
Tysabri
, OcRevus, Lemtrada, etc.).
Here are CDC guidelines to be safe:
Wash your handsβ often while out in public or use anti-bacterial hand gels/wipes. When you come home, wash your hands with soap first thing.
CDC and NMSS stated that virus is at a higher risk for people on MS infusions (
Tysabri
, OcRevus, Lemtrada, etc.).
Here are CDC guidelines to be safe:
Wash your handsβ often while out in public or use anti-bacterial hand gels/wipes. When you come home, wash your hands with soap first thing.
nicoly3467
in
My MSAA Community
4 years ago
Update Results of JCV Test - Positive
From what I was told, the risk of PML is actually lower when on Ocrevus than
Tysabri
. Too bad I didnβt know that when it first became available. Even though I had turned that down when I was first given the option.
From what I was told, the risk of PML is actually lower when on Ocrevus than
Tysabri
. Too bad I didnβt know that when it first became available. Even though I had turned that down when I was first given the option.
KrittyKat60
in
My MSAA Community
4 years ago
PPMS & Living my Best Life
Iβve tried several rounds of Solu-Medrol, in the beginning few months, 11 rounds of
Tysabri
, but taken off due to being JC+, Copaxone for another year and have been on Ocrevus the balance of time. Unfortunately I cannot say that Iβve noticed a slow in my progression...but who really knows.
Iβve tried several rounds of Solu-Medrol, in the beginning few months, 11 rounds of
Tysabri
, but taken off due to being JC+, Copaxone for another year and have been on Ocrevus the balance of time. Unfortunately I cannot say that Iβve noticed a slow in my progression...but who really knows.
Hidden
in
My MSAA Community
5 years ago
Tysabri
Ok went to my
Tysabri
infusion, my next dose is at the end of the month....its been about 2 weeks. First few days I was very tired. This is now the second time on
Tysabri
. The first time was about 6 years ago. I went off it because of levels (JC). Now. I am on it every 6 weeks.
Ok went to my
Tysabri
infusion, my next dose is at the end of the month....its been about 2 weeks. First few days I was very tired. This is now the second time on
Tysabri
. The first time was about 6 years ago. I went off it because of levels (JC). Now. I am on it every 6 weeks.
Bkboo
in
My MSAA Community
5 years ago
No more Tysabri. Now what?
For about 12 years I've been on monthly infusions of
Tysabri
. Now I've become JC positive and need to switch to another DMT. Has anyone else experienced this and if so, what was your new choice?
For about 12 years I've been on monthly infusions of
Tysabri
. Now I've become JC positive and need to switch to another DMT. Has anyone else experienced this and if so, what was your new choice?
victory37
in
My MSAA Community
5 years ago
Ocrevus not for me
I have Primary Progressive MS, was on
Tysabri
and switched to Ocrevus. Have been on Ocrevus for 2 years. Still a steady decline so Neurologist suggested we try Mayzent. Said he has had success with it.
I have Primary Progressive MS, was on
Tysabri
and switched to Ocrevus. Have been on Ocrevus for 2 years. Still a steady decline so Neurologist suggested we try Mayzent. Said he has had success with it.
DIsneyQueen
in
My MSAA Community
5 years ago
DMT'S
I went from
Tysabri
to Gilenya to Ocrevus and now going back to
Tysabri
...sigh I have the JC Virus, but my Neuro stated that I can do
Tysabri
every 6 weeks without much risk. Anyone experience the 6 week
Tysabri
and with JC virus?
I went from
Tysabri
to Gilenya to Ocrevus and now going back to
Tysabri
...sigh I have the JC Virus, but my Neuro stated that I can do
Tysabri
every 6 weeks without much risk. Anyone experience the 6 week
Tysabri
and with JC virus?
Bkboo
in
My MSAA Community
5 years ago
I did it! Changed doctor and meds.
Tysabri
did for a while. I want to thank everyone who chimed in and told me that change can be good! Iβm always uncomfortable changing doctors b/c of the awkwardness of it (and it was awkward). Looking favorably towards a brighter future for all of us!!!
Tysabri
did for a while. I want to thank everyone who chimed in and told me that change can be good! Iβm always uncomfortable changing doctors b/c of the awkwardness of it (and it was awkward). Looking favorably towards a brighter future for all of us!!!
Juleigh21
in
My MSAA Community
5 years ago
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