advertisement
Reply
 
Thread Tools Display Modes
Old 03-23-2011, 11:18 AM #91
clarkstar's Avatar
clarkstar clarkstar is offline
Member
 
Join Date: Aug 2010
Posts: 316
10 yr Member
clarkstar clarkstar is offline
Member
clarkstar's Avatar
 
Join Date: Aug 2010
Posts: 316
10 yr Member
Default

Quote:
Originally Posted by daisy.girl View Post
I have yet another question....Tysabri is so new to me. I have only had 2 infusions, one on Feb 7th and my second on March 9th.

Yesterday, I began itching randoming all over my body (not severely), head, neck, legs, etc...and this morning, I am beginning to get a cold sore on my upper lip.

Has it been too long since my infusion to have a reaction? Would this be a reason to stop Tysabri?
i get that too (the itching). wish i could tell you the answer. i dont think it reason enough to stop personally, i would share this with your dr or the infusion clinic for sure!
__________________
Multiple Sclerosis Diagnosed August 2010
clarkstar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
daisy.girl (03-25-2011), Grammie 2 3 (03-25-2011), Natalie8 (03-25-2011), Riverwild (03-24-2011), shayna (03-23-2011)

advertisement
Old 03-23-2011, 02:22 PM #92
shayna shayna is offline
Junior Member
 
Join Date: Jun 2009
Location: Nevada
Posts: 80
10 yr Member
shayna shayna is offline
Junior Member
 
Join Date: Jun 2009
Location: Nevada
Posts: 80
10 yr Member
Default

Quote:
Originally Posted by daisy.girl View Post
I have only had 2 infusions, so no, I do not feel like it has helped at all, in fact I feel worse.
They only gave me (30) Klonopin, and directions say I can take up to 3 a day. I only took one a day, for a few days, they made me feel very loopy.
I guess I will have to wait for infusion 3 to see if I get the same feeling, then I will know it is the TY. It concerns me a bit, because, I was dizzy and off balance, and my heart was racing, as well as feeling nausea.

Thanks for asking
Daisy, since I'm not a dr I can only tell you my experiences with Valium....which is in the same family of meds as Klonopin. Prior to having an MRI I take 10mg. of Valium. It makes me feel a little loopy and off balance but I prefer that to feeling like I want to scream, having my heart pounding so hard it feels like it will burst and feeling as if I might pass out. Later on the Valium makes me sleepy but I don't sleep through the MRI because I'm still a bit nervous but I'm able to handle it with the Valium.

I have a friend who has panic attacks on a regular basis. She takes something for it that is similar to Klonopin and Valium. I know it took her over a month of taking the med daily before the side effects wore off and she felt comfortable driving a car. I think she takes 2 tablets a day.

When I first began Ty I was nervous about every little thing. I didn't even notice that I was doing better because I was so focused on all the side effects they told me to watch out for. It was my husband who noticed that I began to walk a bit better. I was using a walker in the house most of the time but, other times I would hobble a bit from chair to chair. I had stopped using a wheelchair in the house. He realized that I was able to walk a straight line instead of weaving

hugs,
Shayna
shayna is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
daisy.girl (03-25-2011), Grammie 2 3 (03-25-2011), Natalie8 (03-25-2011), Riverwild (03-24-2011)
Old 03-24-2011, 09:20 PM #93
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Quote:
Originally Posted by daisy.girl View Post
I have yet another question....Tysabri is so new to me. I have only had 2 infusions, one on Feb 7th and my second on March 9th.

Yesterday, I began itching randoming all over my body (not severely), head, neck, legs, etc...and this morning, I am beginning to get a cold sore on my upper lip.

Has it been too long since my infusion to have a reaction? Would this be a reason to stop Tysabri?
Is it possible that it is nerves or an allergic reaction to something else that is causing this?
I would be concerned if it happened during infusion or within 48 hours of infusion. None of it sounds like a reaction to Tysabri since it's been a few weeks since your infusion, but the best person to ask would be your physician.

I questioned myself about every little twitch when I started Tysabri, but decided that it was probably because I had heard too much testimony about the concerns and fears about what might happen with Tysabri, since it was so new and not a lot of people understood how it worked. I resolved to relax, sit back and just be aware of what was happening and write it down and then when I read over what I had written a few days later I would realize that it had passed without a problem. The things that did not pass were reported to my doctor and we dealt with them at my regular appointment every three months.

I hope things get better for you. Tysabri is not for everyone and some people cannot tolerate it as well as others. It doesn't mean you are a failure, it just means it didn't work for you.

Some of us couldn't take the interferons, some of us couldn't take copaxone, some have bad reactions to steroids, and for some, none of the meds that were available worked for them. We are lucky to have choices now, because less than 25 years ago there were no drugs to choose from, just drugs to try and treat the symptoms. Now we have the ABCRs and Gilenia and more coming out soon. Scientists are working on stem cell treatments and investigating venous insufficiency and other things, identifying the genes that appear to relate to MS and tying in what they have learned while working on other diseases that may help people with MS.

I still believe that there will be an understanding about the whats and whys of MS in my lifetime, as well as a way to stop it.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
daisy.girl (03-25-2011), Grammie 2 3 (03-25-2011), Natalie8 (03-25-2011)
Old 03-24-2011, 09:27 PM #94
Riverwild's Avatar
Riverwild Riverwild is offline
Magnate
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Default

Today I had # 50.

It was a quiet day, no problems, no concerns...

except that the infusion center moved since last month and they forgot to tell me.

Fortunately I knew where they were going, so they didn't succeed in hiding from me.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
Riverwild is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
clarkstar (03-25-2011), Grammie 2 3 (03-25-2011), Natalie8 (03-25-2011), SallyC (03-25-2011), shayna (04-04-2011)
Old 03-25-2011, 11:40 AM #95
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

River, you are going to keep getting tested, right?

Congrats on 4 good yrs on TY.
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
clarkstar (03-25-2011), Natalie8 (03-25-2011), Riverwild (03-30-2011), shayna (04-04-2011)
Old 03-25-2011, 12:30 PM #96
clarkstar's Avatar
clarkstar clarkstar is offline
Member
 
Join Date: Aug 2010
Posts: 316
10 yr Member
clarkstar clarkstar is offline
Member
clarkstar's Avatar
 
Join Date: Aug 2010
Posts: 316
10 yr Member
Default

Quote:
Originally Posted by SallyC View Post
River, you are going to keep getting tested, right?

Congrats on 4 good yrs on TY.
hey river, are you still on every 4 weeks? many i speak with at my infusion center are cutting back to 6 and 8 week intervals after a couple years
__________________
Multiple Sclerosis Diagnosed August 2010
clarkstar is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Grammie 2 3 (03-25-2011), Natalie8 (03-25-2011), Riverwild (03-30-2011), shayna (04-04-2011)
Old 03-29-2011, 06:48 AM #97
Kara1234 Kara1234 is offline
New Member
 
Join Date: Mar 2011
Location: Germany
Posts: 3
10 yr Member
Kara1234 Kara1234 is offline
New Member
 
Join Date: Mar 2011
Location: Germany
Posts: 3
10 yr Member
Default Tysabri #54

Hello All. I am new here and I am looking for all you fellow Tysabri users. I live in Germany (husband was transferred for work 20 months ago) so I am looking for some English support. Do not know many people that have been on Tysabri as long as I have. I love it, no reactions, and I have been stable for over 4 years.
yesteray was #54 and it took 6 times to find a vein. It freaked me out. I already have a hard time when I have to go to the hospital to test for blood. They always have to go to a few veins to get more than one vial to test from me.
My doctor here said I should start looking into Fingolimod the oral medication since I am having issues. So again stressing me out! Change medicine in another country.
The doctor that I go to only does the vein in the arms, no the hand. On the 6th attempt they sent me to a different practice to have the doctor put the needle in my hand and then I walked back to my doctors office and had my medicine.
How long can we safely stay on Tysabri? So many questions!!!
Thanks!!
Kara1234 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (03-29-2011), Riverwild (03-30-2011), SallyC (03-29-2011), shayna (04-04-2011)
Old 03-29-2011, 07:06 AM #98
daisy.girl daisy.girl is offline
Member
 
Join Date: Feb 2010
Posts: 258
10 yr Member
daisy.girl daisy.girl is offline
Member
 
Join Date: Feb 2010
Posts: 258
10 yr Member
Default

I got a call from my neuro yesterday.

I tested positive for the JC Virus.

Also, my neuro monitors CD4 T-cell level on all his Tysabri patients. My baseline was high....over 2000 (range 490-1700).

Anyone else have their CD4 cells monitored??

Here is a report by Elsevier about Neuroinflammation in MS: "Autoantibodies and autoreactive T cells against these myelin antigens have been detected in MS patients."

It said there was a type of CD4 T-helper cell that react against myelin.

What I read, is that there are some studies being done to correlate these CD4 cells to MS and other auto-immune disorders.

Source: http://www.direct-ms.org/pdf/Immunol...%2003%2006.pdf
__________________
Dx: RRMS Jan 2010;
LDN: March 2010-Dec 2010; Aug 2012-Nov 2012
Tysabri: Feb 2011-March 2011 reaction
Gilenya: August 2011 reaction
Copaxone: October 2011 reaction
Tecfidera: May 2013 reaction
daisy.girl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (03-29-2011), Riverwild (03-30-2011), SallyC (03-29-2011), shayna (04-04-2011)
Old 03-29-2011, 10:31 AM #99
SallyC's Avatar
SallyC SallyC is offline
In Remembrance
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
SallyC SallyC is offline
In Remembrance
SallyC's Avatar
 
Join Date: Sep 2006
Location: SW Ohio
Posts: 17,844
15 yr Member
Default

So sorry Daisygirl.. I know what I'd do..
__________________
~Love, Sally
.





"The best way out is always through". Robert Frost



~If The World Didn't Suck, We Would All Fall Off~
SallyC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
daisy.girl (03-29-2011), Natalie8 (03-29-2011), Riverwild (03-30-2011), shayna (04-04-2011)
Old 03-29-2011, 11:57 AM #100
Kara1234 Kara1234 is offline
New Member
 
Join Date: Mar 2011
Location: Germany
Posts: 3
10 yr Member
Kara1234 Kara1234 is offline
New Member
 
Join Date: Mar 2011
Location: Germany
Posts: 3
10 yr Member
Default

do you have any problems with finding a good vein any more? I have had 54, and I am. Have you thought how long you will be on Tysabri?
Thanks
Kara
Kara1234 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Natalie8 (03-29-2011), Riverwild (03-30-2011), shayna (04-04-2011)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
LDN Information & Check-in 2 SallyC Multiple Sclerosis 827 07-07-2017 09:46 PM
Tysabri Information and Check In part 2 ewizabeth Multiple Sclerosis 745 01-11-2011 09:17 PM
Tysabri Information & Check In Curious Multiple Sclerosis 988 04-16-2009 05:09 PM
LDN Information & Check In SallyC Multiple Sclerosis 844 01-15-2009 11:40 AM
Looking to Share Information & Support catluvr123 New Member Introductions 11 05-07-2008 08:45 AM


All times are GMT -5. The time now is 03:17 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.