Thank you for the feedback-- finally --someone is on tysabri--i was startingto think no on ewas-- so would you say it is helping? what are your symptoms currently and how is your MS at this point-- thank you so much for replying-- did you let your body clear out of other meds first? i am considering tysabri and Low Dose N (ican't spell it) but that one is hard to get prescribed-- i had lots of side effects with copaxone and cause of high suicide rate in my family i am not a canidiate for interferons-- how would you say your side effects are on tysabri-- thank you so much lauren and god bless you-- hope to hear more from you soon
Peace, Hugs and Hope
I am also considering Tysabri as I just found out that my work plan will cover the cost. I am waiting for an MRI first to see how the Betaseron is doing before I decide. It makes me nervous that they have no idea what the long term side effects will be. But believe me, if I was running out of choices like you seem to be for treatment, I'd be all over it.
Is it me, or did that website msladyinca shared sound too good to be true?
Post Edited (msladyinca) : 7/2/2007 12:19:52 PM (GMT-6)
The website http://www.mspatientsforchoice.org/ is an all volunteer non-sponsored website that was starting by MS patients (and most of its members testified at the FDA Tysabri hearings).
It's a very small website, but it's dedicated to providing accurate Tysabri information for anyone that is seeking same.
Many of the volunteers donate their time, experiences and knowledge in helping other MS patients, which imho is pretty darn wonderful.
Oh, and you said:
Tysabri (formerly known as Antegren) has been in clinical trials since at least 1999, and I happen to know one MS patient that has received 51 infusions of Tysabri...and Tysabri's three year safety and efficacy data has been published too.
Have a great day Shar!
Post Edited (msladyinca) : 7/1/2007 12:18:36 PM (GMT-6)
Thank you Lauren for such great info and feedback-- i am glad the tysabri is working for you and no side effects that is freat.. i am medicine sensitive so the side effect factor is important-- I have actually been feeling better since I stopped Copaxone shots which I was only taking every other day-- I got married yesterday and was able to be awake with minor fatigue from 830am to midnight... i slept most of the day before but so good to be able to enjoy my special day...
shar-- i know how tough it is to battle anxiety-- i have been for so long-- klonopin helps and it also helps with my MS pain (I have an MS hug from a lesion in my spine) Also I know the fear of trying a new treatment taht is why i am doing research and letting my body be cleansed of steroid and copaxone...
Love sharing with everyone-- keep me posted please
Hope hugs and peace
May the Lord bless your union with much love, peace and happiness, always
I am on LDN and it has helped some especially bladder issues. I recommend checking it out at www.lowdosenaltrexone.org. There are practically no side effects (disturbed sleep for a short time), it is inexpensive (about $20.00 a month) and some people have had great results. I believe one of the reasons it is not publicized is the pharmaceutical co are not interested in a drug that is not going to make them money.
LDN is being used succesfully with a wide range of conditions(Crohns, MS, HIV, Cancer). I have lyme although I was originally dx with MS several years ago. Recently I have heard lyme Drs are rx this too although I began taking it for MS.
What have you got to lose by trying it? Good Luck.
thank you for the info and feedback about LDN-- i am debating between tysabri and that drug-- if the doctor will prescribe-- i have MS-- how did they eventually find out you had lyme instead---and is lyme cureable? right now i am on nothing for my MS --went off copaxone about 2 weeks ago now and still have painful lumps and skin trouble but hopefully with time it clears up-- again i want to thank you for the info and would love some more feedback-- lyme gives you lesions too right-- i know they thought i may have that but never tested-- i have had lots of lesions in brain and spine--
Hope Hugs and Peace
I would be glad to share what I have learned and the similarities between the two diseases. Would you mind if I e-mailed you?
Thank you for more info on the tysabri-- is your BIL doing ok? what types of reactions is he having? How long has he been on it? I am still researching and trying to figure out what is best for me to do-- no copaxone again and i can't do interferons cause of high famioly suicides and mental health history but i wasn't too excited to try those anyways-- i don't like injecting myself
anymore info would be helpful
thank you so much
Hi there pedidiva,
If your BIL is being tested for antibodies, hopefully his neurologist knows that these antibodies may be transient and will disappear with continued dosing of Tysabri. He should be retested in another three months to see whether or not these antibodies are persistent.
Also, hopefully, his neurologist will not discontinue treatment during the testing period as this could cause your BIL to be at risk for hypersensitivity reactions at the time of the infusions. I'm not a doctor, so please don't take the above as medical advice, because it's not. ;)For more information regarding the above, see page 15 of the Tysabri Label/Patient Information Guide at http://www.biogenidec.com/site/TYSABRI-PI-MedGuide.pdf, which states in part:
"If the presence of persistent antibodies is suspected, antibody testing should be performed. Antibodies may be detected and confirmed with sequential serum antibody tests. Antibodies detected early in the treatment course (e.g., within the first 6 months) may be transient and disappear with continued dosing. Repeat testing at 3 months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI® in a patient with persistent antibodies....The long-term immunogenicity of TYSABRI® and the effects of low to moderate levels of antibody to natalizumab are unknown. Experience with other monoclonal antibodies suggests that patients who receive therapeutic antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment."
By any chance, did your BIL receive Tysabri in 2004/2005? (prior to it being temporarily removed from the market)... or is he coming up on his third infusion? (i.e., the 12 week mark).
Most neurologists that I know pre-treat their patients for 30 minutes with Benadryl in order to reduce the risk of hypersensitivity/infusion reactions, and they slowed the drip rate down to approximately an hour and a half (instead of the regular one hour) and this works great for them. Personally, I take a Claritin 30 minutes before my infusion as Benadryl really does nothing for me.
Hope this information helps, keep us posted on your BIL's progress, okay?
ok now that sounded scary to me-- what are antibodies and why is there so much prep? is this drug that dangerous-- i was hopeful now worried again-- not sure what is better the drugs or disease--
One of the reasons these issues came up was because when the drug was pulled from market temporarily, and patients who received Tysabri previously, and then had to wait approximately 16 - 18 months to restart Tysabri again when it was returned to the market, some of these patients developed antibodies to the drug.
Antibodies are quite common in all of the ABCRs, as any disease modifying drug (DMD) changes the immune system somehow. I believe this is one of the reasons why patients switch from one of the ABCRs to another other (hypersensitivity is akin to being allergic).
If you have never had a MS treatment such as a monoclonal antibody (which is what Tysabri is), I would imagine that your chances of being allergic to it are significantly less than those of us that had it back in 2004/2005-so you would be starting the medication with a clean slate so to speak. I know that you're med sensitive Zoe, but I think you worry too much - (LOL)
Almost every new patient that I hear from that has started Tysabri tells me that they worried for nothing, have had little or no side effects whatsoever, and have actually started seeing improvements in their disability (provided that their disability was not permanent).
Each patient considering Tysabri should fully discuss this medication with their own treating neurologist, because each patient needs to understand the risk versus benefit factor and decide for themselves as to their own comfort level of risk that they can live with.
As for me, I've never been afraid of Tysabri, never... in my opinion, the benefits of Tysabri far outweigh the minimal 0.1% risk..... heck, if I see any risk at all my risk is higher that I'll get hit by moving bus tomorrow than anything ever going wrong from Tysabri! (LOL)
Take care dearheart, enjoy your 4th!
Post Edited (msladyinca) : 7/3/2007 4:00:33 PM (GMT-6)
Forgive me for being a bit skeptical, but I am coming around now
I had no idea that Tysabri can actually improve your existing symptoms (if not permanent). Do you know how it does that?
I think I'm going to ask about going on Tysabri sooner rather than later, and not wait for that MRI before I decide. I'm guessing the Touch program will want me to have one before I start anyway, to get a baseline of where I'm at?
While the Betaseron is helping reduce my relapse rate (I think anyway) I know the disease itself is worsening. Since part of my fatigue is probably from the Betaseron, I'm not so loyal that I won't drop it for something better. I read for a lot of people they get some of their energy back with Tysabri.. boy that would make a huge difference in my life.
Thanks for the info,
Now to answer your question:
Remember, I'm not a doctor (even though some people think I play one on TV-heehee), but this is my own theory of how Tysabri works...
In Multiple Sclerosis, damaging inflammation cells (T- cells) cross the Blood Brain Barrier (BBB) where they enter our Central Nervous System (CNS), and see our myelin as foreign and they attack it... which results in scarring (lesions) and damage (i.e., the symptoms we feel).
Tysabri has been designed as a Selective Adhesion Molecule (SAM) that specifically attaches itself to the damaging T-cells which prevents a majority of them from crossing the thin BBB, thereby halting (or greatly reducing) the cascading effects of the damaging T cells from reaching our CNS and destroying our myelin. And even if a few of those pesky T-cells did manage to cross the BBB and get into our CNS, Tysabri has the ability to migrate (move) these T-cells away from our myelin, giving us added protection.
This in turn allows our bodies the opportunity to rebalance our own immune systems, resulting in the body healing itself from the damaging effects done by the bombardment of T-cells in our CNS (i.e., allows for regeneration of nerve cells, axons, nerve receptors, etc.), providing the damage is not permanent.
A really good explanation of how Tysabri works is to view a short three-minute video which can be found at: http://www.mspatientsforchoice.org/AMI.wmv
This is another reason why I firmly believe that early intervention with Tysabri will be extremely beneficial in reducing relapses, slowing/stopping the disease process, and really giving our bodies a fighting chance to live as "normal" a life as possible until a cure can be found for MS.
For proven data Re: improved EDSS scores, improved vision loss, improved cognitive function, and improved Quality of Life data, etc., see:
That ought to be enough reading material for a while, huh? LOL
Take care Shar, and a wonderful, safe, happy 4th to you and everyone tomorrow -
PS: yes, the Touch protocol for Tysabri requires a pre-requisite gadolinium MRI of the brain to be used as a baseline for measuring any future MRIs, if needed.
Post Edited (msladyinca) : 7/4/2007 12:26:45 PM (GMT-6)
Lauren and Sharr and Everyone
Lauren you are right I worry too much I am scared of drugs maybe cause I abused recreational stuff when I was a stupid teen or because I was pumped full of psychotropic drugs that made me worse when I was being dismissed as crazy when I actaully had MS-- I am trying to be more open about them--seriously--
Sharr-- maybe we can do this together in a sense =) My doctor wants to test me for lyme first which probably should have been done at time of diagnosis and I am not due to see him for about another week or 2-- but i am open to tysabri or LDN
Nutrition post person-- (sorry didn't see a name)-- I changed my diet and had one of the best 4 months as faras how i felt and was on no drugs at the time but unfortunatly I develped 14 new lesions-- I take cod liver oil --eat fish and poultry and try to stay away from red meat-- i like my sweets but try on that too to cut down-- I need fat I am only 92 pounds =) I do not drink any alcohol or do recreational drugs, nor do I consume any caffeine-- (SIDE NOTE TO SHARR--THIS HELPS WITH MY ANXIETY TOO) I drink only juices and water and tea and yes it does help-- diet definitly helps because when I get lazy I notice I am more symptomatic
Hug hope and Peace
Hope everyone had a nice July 4th. I don't think we did anything for Canada Day on July 1st... I was pooped...oh maybe we went out for dinner... lol.
Zoe - Yes, we should keep each other posted if/when we go ahead with the Tysabri I meant to say in my earlier post .. CONGRATULATIONS on your marriage!!!! I'm so happy for you, and it's great your fatigue let you enjoy it.. awesome.
Lauren thank you so much for your detailed reply! I am still working my way through all the info.. it's much appreciated. I feel like I have something new to be hopeful about.
Thank you for the congrats-- yes we should keep each other posted-- i am still looking into LDN too but so far tysabri seems more effective.
Lauren-- i too need more time to go through the links and check out the info but thank you for all the info so far.. do you have no use of your legs at all? can you work? do they know if it can "fix back" my mom's friend with MS was in a wheelchair for 5 years and then he walked again and now is doing great 15 years later
Hi Zoe and Shar,
Both of you take your time reading all the info that you can regarding Tysabri.
I hope you both had a wonderful holiday.
Zoe, you ask, "do you have no use of your legs at all? can you work? do they know if it can "fix back" my mom's friend with MS was in a wheelchair for 5 years and then he walked again and now is doing great 15 years later"...,
No Zoe, I don't - the severe relapses that I had in June 2005 left me wheelchair-bound, and my legs are pretty much useless... but they worked perfect from 1976 to 2005! I can't work anymore either, I retired from being a certified paralegal for 26 years in 2001... so I can't really complain.
I do not know whether or not the damage left by my relapses from 2005 through October 16, 2006 (when I was able to restart Tysabri) is permanent or temporary. I am praying its temporary and I'm staying hopeful that I'll see some improvement with continued Tysabri treatments. But so far, I'm not getting any worse so that's a good thing! (Oops- I sounded just like Martha Stewart- heehee).
I do physical therapy exercises three times a day to try and strengthen my leg muscles. I really hate the exercises because my caregiver has to stretch the tendon in the back of each leg so that my legs don't become atrophied, and when he does this - I get severe muscle cramps in my legs (like charlie horses- owie), but I do the p.t. anyway ... With the hope that I'll walk again someday.
I just wish that Tysabri had been available for me (and others) so many years ago....the needless pain, suffering, and disabilities from the relapses we've had to endure could've been avoided.
Ah well, what happened, happened - we can't go back in time and change our circumstances - So for me, it's all good... I'm pretty much a happy camper -
Take care you two,
(((((((((( hugs )))))))))))
Post Edited (msladyinca) : 7/5/2007 2:18:40 PM (GMT-6)