Group photo
Author:
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/23/09 6:57 P

My SparkPage
Send Private Message
Reply
Ditto.

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
CARGAL13 Posts: 15
8/23/09 6:09 P

My SparkPage
Send Private Message
Reply
Thank you NMDRAGONFIRE for your post. I did not have my TOUCH paperwork in front of me when I wrote my last couple of posts but I want to share the success of Tysabri with everyone who is still suffering with older treatments because I feel soooo good. Glad to hear that there are others out there who appreciate the Tysabri as much as I do. If even one person can benefit from Tysabri infusions, I would be so happy. Have a great day and thank you again for your input.


8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/23/09 5:42 P

My SparkPage
Send Private Message
Reply
Me too. I have never heard of most of these new ones because I just get so tired with all the research, but I do read these message boards and get so much more out of it.

emoticon ladies

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
NMDRAGONFIRE's Photo NMDRAGONFIRE Posts: 1
8/23/09 5:36 P

My SparkPage
Reply
I, too, have been on Tysabri for 18 months and haven't looked back. I have had no side effects from the drug, and haven't had any new symptoms or changes in my MRI. Can't beat that! I had taken Copaxone and Avonex in the past and they weren't helping my disease progression.

As others have said, you have to get the infusions at a facility that is "TOUCH prescribing program approved". This is due to the small chance of developing PML (Progressive Multifocal Leukoencephalopathy) and also to watch for anaphylactic reactions to Tysabri. Thankfully my doctor's office is one of those facilities.

PML is an often fatal rare brain disease caused by a virus that is usually kept in check by a normal immune system. The way Tysabri works for MS also makes your body not as able to defeat the virus.

There have been some people who have actually seen an IMPROVMENT of their disability and symptoms after taking Tysabri. One patient I was talking to while getting my infusion used to need a walker before taking Tysabri, and now he is able to walk without assitance.

The benefits that Tysabri offers are well worth the tiny risk of PML, IMO, and they check you so well before your infusions that they would catch it pretty quickly if it were to develop.

I encourage any of you who aren't seeing success with your current medications to talk to your doctor's about taking Tysabri. There are many physicians who are still too afraid to prescribe it, unfortunately.

Edited by: NMDRAGONFIRE at: 8/23/2009 (17:37)
 current weight: 190.0 
223
211
199
187
175
UGLYFRUIT's Photo UGLYFRUIT Posts: 210
8/23/09 4:48 P

Send Private Message
Reply
Never heard of any of these meds, but will keep reading and listening in case I missed them.

Uglyfruit

Take Care.


 Pounds lost: 2.0 
0
17.25
34.5
51.75
69
TALTEXANNA's Photo TALTEXANNA Posts: 411
8/23/09 3:04 P

My SparkPage
Reply
My husband is currently in a study for an IV drug called Campath (Alentuzimab). During the study the infusion is once a year for two years, then two years of observation. He's had his two infusions and he's been doing really well. He still needs medication for his migraines but otherwise he's fairly normal. Like anyone else with MS he's got to pace himself and gets worn out if he's not careful. But it's better than when he was on his injections. He hasn't had any disease progression in the last year and a half since he started the study. We're hoping that he will go on Tysabri when the study is done. We've heard great things about it. Oh, and PML is a virus that most people have circulating in the their bodies, and if their immune systems are too weak or overloaded, it can become active. To most people, it's harmless because it's never active, but when it becomes a problem, it becomes a BIG problem. In fact, it can kill people. I think I read in an article that people with HIV and AIDS have a problem with PML because of their immune system problems. However, if going on Tysabri can give someone a great quality of life, and the risk of PML is apparently VERY low, I think it would be worth it.

Highest Weight: 171
Current Weight: 162


 current weight: 193.6 
193.6
177.7
161.8
145.9
130
CARGAL13 Posts: 15
8/23/09 2:52 P

My SparkPage
Send Private Message
Reply
Actually PML is the shortened version of some really long medical diagnosis that I cannot pronounce and wouldn't even attempt to spell. PML is a brain infection that can sometimes lead to death. It is one of those infections that "must run it's course." Some people survive PML but it is not something to play around with. There is an increased risk of this infection for Tysabri patients but mostly if they also have beta inferon blockers like Rebif or Copaxone in their systems.

Thank you IRISHCCHAN for your input. I also had to convince my family that Tysabri was the best choice for me because of the risk of PML but the risk is so outweighed by the quality of life I have now.

I also take my infusions late on Friday afternoons for the very same reason. So glad you are here. Welcome to the team!

8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/23/09 1:48 P

My SparkPage
Send Private Message
Reply
Hi IRISHCCHAN emoticon to this MS team. You sound very knowledgeable in this subject as are our other ladies.

I don't know what PML is. I assume it is another drug.

emoticon

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
HEALTHYBIZ's Photo HEALTHYBIZ Posts: 1,396
8/23/09 1:23 P

My SparkPage
Send Private Message
Reply
Thanks for this information, Irishcchan, but what's PML?

 current weight: 179.0 
212
201.5
191
180.5
170
IRISHCCHAN Posts: 1
8/23/09 1:11 P

Send Private Message
Reply
I'd like to add my two cents about Tysabri. I have been receiving infusions for over a year now, and it has changed my life. I am able to work full time, haven't had any major relapses, and my latest MRI showed no new lesions. I believe the small risk of PML is outweighed by the quality of life I am experiencing. Just yesterday I was able to go on a strenuous hike in the local mountains with my husband. Of course, I was really tired when I got home and took a two hour nap, but to be able to do what I love is a blessing.

I chose Tysabri as my very first MS treatment, and, happily, my neurologist is supportive. I've never had a bad reaction to the IV, so now I sign myself out of the hospital when the drip is completed. I schedule my infusions for Fridays in the late afternoon, so I have the next day to recover. I take it easy, nap, and relax.

I'm really happy with my choice of treatments. My husband took some convincing because of the PML possibility, but now he is supportive. I will use Tysabri until something better comes along.

CARGAL13 Posts: 15
8/23/09 12:04 P

My SparkPage
Send Private Message
Reply
I completely agree with you there. There would be no way I could have done my rebif shots without the auto injector and even with it, I still had issues finding an un-brusied part of the body to inject.

Yes, Tysabri infusions are done at the hospital. It is considered out-patient surgery. The start of the IV, then a bit of saline, then the Tysabri. The Tysabri drip (100ml) takes about an hour then the drug company that makes the Tysabri REQUIRES that you be monitored for at least an hour to ensure you have no reactions to the drug. The whole appointment usually takes me about 3 hours.

I often nap in the recliner while receiving my treatment and look at the appointment as my scheduled monthly rest, nap and slow down time. Sometimes, I read a good book or watch television but usually a nap suits me well. During the treatment the nurse will take your vitals (temp, pulse, oxygen level and blood pressure) about 3 times.

What else can I tell you all. Oh yeah, the needle sticks. I have found that if I drink a good amount of water on the two days prior to my treatment that the nurse has no trouble finding my veins. If I don't, then it is more difficult but that is on me. Still it is better than a stick every other day on the Rebif. Also, if necessary you can have a shunt put in so you never have to be stuck again. I haven't needed that but I know of other patients that have.

Well, I do hope all of this information has been helpful to you all. If you have any other questions please feel free to ask.

Have a great day.

Patti

VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/22/09 1:55 P

My SparkPage
Send Private Message
Reply
From what I've read, Tysabri does have to be done at a medical facility, I guess in case there are problems with the infusion. I'd never be able to start my own IV at home anyway, so it's good to know that a patient never has to do that. Can't even imagine having to stick that garden hose of a needle into one of my own veins. Heck, if I didn't have the auto injector that tiny little Copaxone needle would be out of the question, too. When I was using BetaSeron my late husband used to give me the shots. I managed to give myslef 1 (count 'em, 1) shot when he was really sick one time, but after that I was never able to bring myself to do the shots myself. Thank goodness for the person who thought to invent the auto injector.

Edited by: VALI_T at: 8/22/2009 (13:55)
There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
UGLYFRUIT's Photo UGLYFRUIT Posts: 210
8/22/09 12:40 A

Send Private Message
Reply
I have to psyche myself up to stick the needle in my leg or stomach, veins are so no- no for me.

Take Care.


 Pounds lost: 2.0 
0
17.25
34.5
51.75
69
PROVL8DY's Photo PROVL8DY Posts: 42
8/22/09 12:38 A

My SparkPage
Send Private Message
Reply
I believe, the Tysabri is done at a medical facility and the IVIG is done at home with a visiting in-home nurse.

 current weight: 146.0 
152
149
146
143
140
UGLYFRUIT's Photo UGLYFRUIT Posts: 210
8/22/09 12:31 A

Send Private Message
Reply
I was worrying that you have to do the IV yourself and knew I would not be able to do that to myself! I have not heard of this at home but maybe we are sheltered here! Will keep watching out for info.

Take Care.


 Pounds lost: 2.0 
0
17.25
34.5
51.75
69
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/22/09 12:17 A

My SparkPage
Send Private Message
Reply
Thank you ladies you have helped me so much by giving me that permission I can't give myself. And may all of you take care of yourselves too.

emoticon to all of you. I really appreciate you all.

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
PROVL8DY's Photo PROVL8DY Posts: 42
8/22/09 12:01 A

My SparkPage
Send Private Message
Reply
There is nothing like having MS and trying to care for others whether it is DH or the kids. And I do believe both can be done but you must be vigilant. And forgiving of yourself. I have also found that planning is best too. On busy days, bring out the crock pot. On hot days, plan indoor games/activities or find a friend with a pool. If you are totally wiped out, the dust can stay put and not only make yourself rest but also don't beat yourself up about it. It does no good to rest if you are constantly worried about what isn't getting done. We MS people are fierce creatures with goals and aspirations and high expectations that we put on ourselves. But we each must find a balance....I encourage you to find yours, EG. Good luck. I know you can do this. emoticon

 current weight: 146.0 
152
149
146
143
140
VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/21/09 9:03 P

My SparkPage
Send Private Message
Reply
EG, now you know why I've been encouraging you to take really good care of yourself while you're trying to take care of DH. (Well okay, you probably already knew why....) It's a constant struggle for me, too, but if I don't take good enough care of myself or am unable to get enough sleep for more than a day or two at a time....I'm just worthless! emoticon I end up having to come home from work and go to sleep at 3:00 or 4:00 in the afternoon because I've let myself become so exhausted.

So everyone, please let this be a lesson to you. (As if any of us really needed one on this subject.....) No matter what huge and serious stuff you've got going on in your life, a person with MS really MUST get enough rest most of the time or s/he is going to have big time problems down the road.

So now back to you, EG. My friend, please do take better care of yourself now that DH is through with the surgeries. I know that he loves you very much, and that he wants for you to be as healthy as a gal with MS and a husband with a heart condition can possibly be. Take it easy for a few days.....the world will still keep spinning while you get your rest. emoticon emoticon

There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/21/09 8:35 P

My SparkPage
Send Private Message
Reply
emoticon Healthybiz. I do have heat sensitivity and I totally spaced that out. I feel so much better now. The other thing is that I couldn't sleep that night and I was very exhausted. Now that I have caught up on my sleep, and hibernated in the air conditioning, I am feeling so much better. You nailed it!

emoticon

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
HEALTHYBIZ's Photo HEALTHYBIZ Posts: 1,396
8/21/09 8:20 P

My SparkPage
Send Private Message
Reply
Sorry to hear about your falls and inability to walk that day. Stress certainly has something to do with worsening symptoms. At least for me. And heat now too! emoticon

 current weight: 179.0 
212
201.5
191
180.5
170
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/21/09 7:55 P

My SparkPage
Send Private Message
Reply
Gosh that is such encouraging news I am going to ask my Neuro about it when I see him next month. The last MRI I had was about two years ago.

Since my DH's surgeries, I think all the stress from that (even though I really tried to take care of myself)I have been experiencing some really bad symptoms, again. It is just like when I found out I had MS 20 years ago. I am dizzy and last week I fell coming back to bed from the bathroom. I fell on my left side and I am bruised and banged up on my shoulder, hip and knee. Yesterday we had an early doctor appointment to have the staples removed from my DH's incision and we ate breakfast out. And as we were walking out I couldn't walk and my DH and a very nice young man helped get me into the car. There were no handicapped spaces so the nice young man offered to stay there with me until my DH could get the car. It was a very scary symptom. I have never experienced it before and I don't want to experience again!

I have never been on the shots either. I will find out next month.

emoticon

Edited by: 8RIGHT2DAY at: 8/21/2009 (20:08)
Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/21/09 6:42 P

My SparkPage
Send Private Message
Reply
I'm glad to hear that you've seen so much improvement since starting on Tysabri. I have never really talked to my neurologist about Tysabri and she has never brought it up, but maybe I'll ask her what she thinks about it the next time I see her. Thanks for your helpful response. emoticon

There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
CARGAL13 Posts: 15
8/20/09 10:49 P

My SparkPage
Send Private Message
Reply
I have seen such an improvement!!! I never tried copaxone but I was on Rebiff for several months. Part of my issue with Rebiff was the bruising from the injections. It was getting more and more difficult to find an un-bruised area to inject and like you I just started getting really tired of the shots. I got so I detested them and started really wondering if they were making a difference. While I was on Rebiff, the pain,weakness and tingling in my hands lessened but it was still there. Also, providgil was often needed to get through the day. I would be dizzy at the top of a staircase and started taking the elevator one story at work. Since I have been on Tysabri, (at the recommendation of my PCM who happened to do her internship for a neurologist)I have much more energy and haven't taken any providgil. The pain, weakness and buzzing in my hands stopped and I have my balance back. I now go to Jazzercise class 5-6 days a week and have enough energy to keep up with my 3 kids most of the time.

Tysabri has given me back my quality of life. And best of all I no longer have to shoot myself every other day. lol. I do hope the group finds this information helpful and if anyone else has any questions please feel free to email me.

Patti.

VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/20/09 7:00 P

My SparkPage
Send Private Message
Reply
Have you seen any improvement in your MS symptoms since starting Tysabri? I've seen a lot of improvement since going back on Copaxone, and I have no active lesions at all. Have gone from being secondary progressive back to relapsing-remitting without a single relapse since 2001 or 2002. But I would certainly not be unhappy to "have to" give up poking myself every single day....

There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
CARGAL13 Posts: 15
8/20/09 11:38 A

My SparkPage
Send Private Message
Reply
I have been on the IV drug Tysabri for the past 18 months and it has been AWESOME. I go every 28 days to the hospital for the treatments and they last about 3 hours. 3 hours in a recliner, who of us hasn't done that at some time. Afterward I am typically tired but I go home go to sleep and I am as good as new the next day. Since I have been on the Tysabri the symptoms have subsided and my last two MRI's have shown the MS has not progressed at all and in fact, the active legions I did have are now healed over. I hope this is helpful.

HEALTHYBIZ's Photo HEALTHYBIZ Posts: 1,396
8/19/09 11:59 P

My SparkPage
Send Private Message
Reply
I've heard so much about IVIG for other immune disorders and just recently twice as a treatment for MS. It sounds promising.

Here's a link to some info about it's use with MS. (I had to look it up since you mentioned it!) www.nationalmssociety.org/about-mult
ip
le-sclerosis/treatments/medications/R>intravenous-immunoglobulin-ivig/index.aspx


 current weight: 179.0 
212
201.5
191
180.5
170
PROVL8DY's Photo PROVL8DY Posts: 42
8/19/09 11:47 P

My SparkPage
Send Private Message
Reply
Wow. I can see this is some uncharted territory. I will post info as I find it but it may take some time so please be patient.

Someone mentioned the Solu-Medrol and I have used that a couple of times but am not convinced that it really helps. Plus I always worry about growing hair in unwanted places. LOL

From what I do know is that the IV treatments are once a month for one hour. Tysabri has the side effect of PML which is a brain cancer. IVIG is Intravenous immuno-globin (sp?) and I don't think has too many side effects...but as my husband says, "Everything has a side effect." Thanks for the input and i will keep in touch.

 current weight: 146.0 
152
149
146
143
140
VALI_T's Photo VALI_T SparkPoints: (109,222)
Fitness Minutes: (110)
Posts: 13,476
8/19/09 9:38 P

My SparkPage
Send Private Message
Reply
Please let us know what you find out from your research. (I'm so sick of poking myself every single day......)

There was much rejoicing!


 current weight: 216.0 
230
210
190
170
150
8RIGHT2DAY's Photo 8RIGHT2DAY Posts: 1,201
8/19/09 7:03 P

My SparkPage
Send Private Message
Reply
This is the $64,000 questions. You might want to check out a couple of websites.

www.patientslikeme.com

us.mg1.mail.yahoo.com/dc/launch?.gx=
1&
.rand=7p2csktaokllt


Good luck.

emoticon

Remember to be yourself, because the people that matter don't mind, and the people that mind don't matter.

The quickest way to failure is to try to please everyone.


Life is short! Break the rules! Forgive quickly! Love truly, Laugh uncontrollably..And never regret anything that made you smile.

I've come to realize that the difference in success or failure is not how you look, how you dress, or how you're educated. It's how you think!


 current weight: 150.0 
188
178.5
169
159.5
150
HEALTHYBIZ's Photo HEALTHYBIZ Posts: 1,396
8/19/09 5:57 P

My SparkPage
Send Private Message
Reply
Sorry, can't help. I've only been on Copaxone and I'm so grateful that I haven't had any of the bad reactions. I have friends who couldn't tolerate it. So I haven't had to try anything else yet. That's also because I haven't had a bad relapse since starting Copaxone.

Good luck with your research and if you do try an IV, be sure to let us know how it works.

 current weight: 179.0 
212
201.5
191
180.5
170
KIMBERLY71652's Photo KIMBERLY71652 Posts: 719
8/19/09 5:18 P

My SparkPage
Send Private Message
Reply
I have been on all that you have except avonex and I am afraid to use the others. When I relapse i just go on solu medrol IV and ride out the steroids.



KIMBERLY

SLAINTE


 current weight: 130.0 
179
166.25
153.5
140.75
128
PROVL8DY's Photo PROVL8DY Posts: 42
8/19/09 5:05 P

My SparkPage
Send Private Message
Reply
I am researching and considering IVIG or Tysbari and was wondering if any of you have used it and what were your reactions. I have been on Avonex, Bet Seron, Copaxone and Rebif but all have ended with some kind of bad reaction. Any thoughts?

 current weight: 146.0 
152
149
146
143
140
Page: 1 of (1)  

Report Innappropriate Post

Other Doing it with Multiple Sclerosis!! General Team Discussion Forum Posts

Topics:
Last Post:



Thread URL: https://sparkrecipes.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x1904x27816753

Review our Community Guidelines