| from Lin ---continued.... |
|
|
Reply with quote | #46 |
Tiffany.... etc.
I'm (knock-on-wood) doing well on R.
I would not mind a 1x/month infusion (right now because it would mean I would not have to give myself a shot 3x/week).
There are +/- to all treatments.
You should discuss with your neuro.
Also: track your symptoms and even your activity levels before/after the shot of A. and discuss.
Hang in there.
Lin
PS: please make sure you tell your doc about supplements before you start taking them.
(example: you may not want to take something that makes your immune system work too well.... if you have MS your immune system is in overdrive- you want to keep your immune system "calm")
-I also do some holistic/wellness stuff like: Omega-3-6-9; calcium and vit D; multi-vitamin; some yoga; massage and also take a 20-30 min "nap"/rest everyday.
-I stay out of the heat/humidity (I am extremely heat/humidity sensitive, always have been even before MS dx).
-I think good or positive thoughts and try to do at least one good or nice thing each day (pay it forward).
-I laugh every day, too.
I also totally avoid stress*   
*all is true except no one can totally avoid stress (that's supposed to be funny).
This site may be small, but we certainly listen and discuss.
take it easy
|
| |
| steve |
|
|
Reply with quote | #47 |
I have ppms. Do you think tysabri would work for me? Neuro doesn't think so.
|
| |
| Roy |
|
|
Reply with quote | #48 |
I have Primary Progressive MS Steve. It was my understanding that what Tysabri was for. It was for the people that the A,B,C drugs didn't help or slow down the progress of MS. All that I know as I'm sure that you have read all of my posts that it has help me. I know that I have gotten more feeling in my fingers. It hasn't help my legs any. I still having spasms in my legs and is stuck in a W/C but the baclofen plumb has help the spasms a lot. But as you should know by now no two people with MS are the same. It look like everyone has a difference kind or problems with their MS. Roy  |
| |
| Sharon |
|
|
Reply with quote | #49 |
I have been taking the Tysabri for five months now. I have had MS for about twenty years, diagnosed though 15? or 14, can't remember. I have not had luck with the Tysabri so far, in fact I feel like I am getting worse. More pain, more spasms and more issues with depth perception etc. I am not sure why this is the case but have been thinking about stopping the medication all together. Has anyone gone off this stuff? Does anyone know any other side effects- do they get better or is this the best its gonna be? I feel like I was better before
 any advice would help.
Thanks- Sharon
|
| |
| Sarah Franc |
|
|
Reply with quote | #50 |
I just found this thread. I have been diagnosed for 2 years now, and on Tysabri for 18 months. I didn't notice any real improvement immediately, just like the woman above mentioned. That correlates with the finding that Tysabri can't stop a relapse you are currently having, but it can help prevent the next one. Tysabri is the most effect drug on the market as far as preventing relapses goes. I myself am afraid of something happening that would make me unable to continue taking it.
I need some help though with the incidence of side effects in others. I am having pain in my arms and legs off and on, and joint pain. Those are listed common side effects, but I'm wondering how common and how severe? I am having upper body weakness and pain, and foggy thinking in general. I am seeing my neuro tomorrow, but I really don't know how he can help me.
Sarah
|
| |
| Sharon |
|
|
Reply with quote | #51 |
Sarah,
I also have the above listed side effects. They are considered to be the "normal" side effects of the drug. My neuro had losts of other drugs to combat the tysabri effects but my choice was to stick it out. I decided that I did not want more drugs to cover the effects of the first etc. I think this is a personal choice and you will have to discuss with your health team and family for what you feel is going to be best for you. You say that you have had the disease for two years, and been on tysabri for 18 months. I am curious if you had taken any other ABC drugs prior to this. Did you have side ffects with the other drugs as well? I am under the understanding that the side effects are very very common and that they can range from mild to quie severe. I was also under the understanding that Tysabri is a last recourse drug, that you had to have exhausted the others first and had continuos relapses before taking the tysabri- I may be wrong here, but my Neuro described this as a Last ditch effort for me. I would love to discuss it more with you.
|
| |
| sarah franc |
|
|
Reply with quote | #52 |
I was on Copaxone for almost 6 months and had to go in for steroids every month. I was losing bladder function and was having trouble walking normally and manipulating things with my hands. Tysabri was chosen because every other MS drug takes several months to reach it's pharmacodynamic effects. So yes, I had great hopes for Tysabri and it really has helped me alot. I think I am just going to have to figure out what to do about the side effects.
Sarah
|
| |
| Sharon |
|
|
Reply with quote | #53 |
Sarah-
I am very glad the Tysabri is working so well for you! Yes the side effects are going to be difficult to deal with but I think the alternative is worse. Hang in there and discuss all te options with your Neuro. Keep us informed- and good luck!!
|
| |
| sarah franc |
|
|
Reply with quote | #54 |
I say my doc on Fri. and got a call today. I have severe vitamin D deficiency. I wonder how much of the muscle spasms etc. that I have had haven't been my MS but the D deficiency? My brother and sister both have severe Psoraisis and I was just reading that that disease also is related to D deficiency as are many autoimmune diseases. It's a shame we didn't have healthcare when we were young to detect the problem. I know that they say D deficiency in youth is one of the risk factors associated with developing MS. Oh well, I guess all you can do is take the knowledge you have now and pass it on. |
| |
| Sharon |
|
|
Reply with quote | #55 |
Sara-
That is not unusual actually. I was reading an article about it in womens fitness the other day- they say most of us are lacking the D vitamin. I did not know that it could cause cramps and spasms though. I hope that it helps you to add more of that to your diet. I am an insane milke and cheese fanatic and I love the sun and all my veggies so I don't think I fall into the category- but I may get checked anyway- It can't hurt to be sure. I hope all goes well!!
|
| |
