terrified of tysabri...what to do?

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terrified of tysabri...what to do?

Postby mrsfish » Tue Nov 11, 2008 8:15 am

Hi...my husband was diagnosed with MS about 2 years ago. He tried Rebif and had horrible side effects. He switched to Avonex and did better, but it wasn't clear what was worse: the disease or the treatments. His doctor told us about Tysabri and told us to think about it. He's been off all meds for 3 months and is doing so well. He's like a new man...every now and then his leg gets weak, but nowhere near the severity...The thought of him getting PML terrifies me. What should we do? Should we risk the odds and go on Tysabri? It seems like too big a risk for me. What if he stayed off all meds for a while? I don't know. Can anyone help me?
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Postby chrishasms » Tue Nov 11, 2008 8:28 am

I would talk to your Doctor about Copaxone first. Copaxone is the only one of the CRABS that doesn't screw with the immune system.

Also Copaxone has shown that in very early cases of MS, before severe disability has really set in, it may be the one to go with. Plus I had my GP RX me LDN and I had great success with the combination. I stopped taking the LDN and Copaxone for one month to try to get into a trial and I went to hell in a hand basket so I know they work. I also used LDN w/o Copaxone for awhile ad had success as well.

I know Copaxone is a daily shot but it isn't that bad and it may do the trick just as well.
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Postby patientx » Tue Nov 11, 2008 11:07 am

I'll second what Chris said. While Copaxone is a daily shot, and has some discomfort associated with it, there are no flu like symptoms. I'm suprised your doctor would mention Tysabri before Copaxone.
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Postby daverestonvirginia » Tue Nov 11, 2008 12:55 pm

I also agree, I would try copaxone before Tysabri. Tysabri also terrifies me. But, I would do something, at least try some natural methods like the Best Bet Diet. I do not think it is good to do nothing, because MS is not going to go away on it's own. I believe it is better to fight back early while things are not that bad, if you wait with a treatment it might be too late to really help. But, of course everyone has do what they feel is best for themselfs.
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Postby cheerleader » Tue Nov 11, 2008 1:38 pm

I'm going to echo the above, mrs. fish. Your wifely instincts are right. Copaxone is first line (especially for men) Do some research and ask your husband's neuro. I would also look into lifestyle, nutritional supplements and diet. There's been so much research about vitamin D deficiencies in MS, as well as B12, zinc, magnesium, and antioxidants. Check out the regimens section on the boards....lots of great info. Look into the Swank and Best Bet diets...we've been eating Swank as a family for almost two years, and everybody's healthier.

I know it's all a bit overwhelming, but you will get your balance...together.
wishing you the best,
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Thank you!

Postby mrsfish » Wed Nov 12, 2008 6:44 am

Thank you all for responding. We talked to my husband's neurologist yesterday and went over all of our options. The doctor said that he wouldn't recommend Tysabri just yet, since he seems to be stable. We may have to address the issue again in the future, but Copaxone will likely be the next choice if he gets worse. Thanks for the advice and support!
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Postby patientx » Wed Nov 12, 2008 7:27 am

I haven't been at this very long, so I'm far from an expert. But again, it seems strange that your husband's doctor wouldn't recommend the copaxone now, rather than waiting until things get worse. It seems the conventional wisdom is to try to prevent damage from happening, and that's the purpose of the DMDs.

But, then again, everyone is different, and I think the first rule is that this disease affects everyone differently.
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Postby yeb4432 » Tue Nov 25, 2008 8:37 pm

The first line second line b.s. paradigm about treating ms has to end. I would rather take Tysabri which is proven safe for me, as an immune competent person.

Switching between the ABCRs you are not moving up in effectiveness by switching, Ultimately you are getting the same thing folks, obviously in a different package. Bottom line is that all injectables are ONLY BOUT 30% EFFECTIVE!
brain
Given the status of my lesions through m spinal cord and brain I'll take Tysabri 29999 out of 30000 times. That ratio is going WAY up next year too.

After Copaxone, Tysabri is the safest MS med. and TYsabri is almost 3x more effective than copaxone by itself.

Why weould anyone not want the best to treat an illness that xcan screw you up so much and steal everything,,,,,,
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Re: terrified of tysabri...what to do?

Postby NHE » Tue Nov 25, 2008 11:53 pm

yeb4432 wrote:Switching between the ABCRs you are not moving up in effectiveness by switching, Ultimately you are getting the same thing folks, obviously in a different package. Bottom line is that all injectables are ONLY BOUT 30% EFFECTIVE!


I don't believe that this statement is correct. There are differences between the CRAB medications. First off, there's Copaxone vs. the Ifn-B's. In addition, even between the different interferons there are important differences. For example, Betaseron is produced in bacteria. As a result, the interferon-B protein IS NOT glycosylated, i.e., it does not have any sugar groups attached to it. In contrast, Avonex and Rebif are produced in mammalian cells. As such, the protein IS glycosylated which makes it identical to the interferon-B naturally produced in our bodies. The lack of glycosylation in Betaseron increases the immunogenicty of the protein and makes it more likely that one would produce neutralizing antibodies against it diminishing its effectiveness. The incidence of neutralizing antibodies is much lower in Avonex.

Another difference lies in the injection method. Both Betaseron and Rebif are delivered via a subcutaneous injection while Avonex is given via an intramuscular injection. When I was first diagnosed in 1999, the doctor's prescribing information for Betaseron described the injection site reactions as "injection site tissue necrosis". After 8.5 years of Avonex, I have only experienced some minor bruising probably less then half a dozen times and the bruises usually clear up after a few days. The absorption is also higher with a intramuscular injection then a subcutaneous injection, i.e., about 80% vs. 40%; information which must be taken into account when comparing the dosage differences between the different formulations.

In addition, the doctor's prescribing information for Copaxone stated that it was found to be clastogenic in a mutagenesis assay. This means that it caused breaks in the DNA of the test cells. It is my belief that this action might be related to the lipoatrophy problems which are often seen in people using Copaxone. It may be the case that the subdermal fat tissue is sensitive to Copaxone and that DNA damage is inducing the cells to go into apoptosis.

After Copaxone, Tysabri is the safest MS med.


Again, I don't believe that this is correct. While I have not done an exhaustive literature search, I have yet to read about a case of PML in anyone that was on Ifn-B as their sole treatment.

Lastly, I will agree with you that none of the CRAB drugs are an ideal solution as their effectiveness is limited. However, as I have noted, there are important differences between them.

NHE
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Postby cheerleader » Wed Nov 26, 2008 9:50 am

NHE-
Copaxone was found to be clastogenic in vitro, not vivo...and it was on human lymphocytes, which is what I thought it was supposed to be doing...changing natural killer t-cells and retraining naive t-cells so they do not attack the myelin in the CNS.

Glatiramer acetate was clastogenic in two separate in vitro chromosomal aberration assays in cultured human lymphocytes; it was not clastogenic in an in vivo mousebone marrow micronucleus assay.


The lipography/DNA is pure conjecture, NHE. But I do agree that some people are better Copaxone "responders." Jeff's neuro stated that men with his presentation did well, and she was correct. He has been flare and progression free for almost two years, without enhancing lesions or allergic incident.

And Yeb is, sadly, correct. The injectables have about a 30%, give or take, effectiveness. This could be due to many factors. I do not think tysabri's numbers are any better. The main point of this discussion is that everyone needs to do their research, consider what is tolerable, and proceed.

Our personal opinions are purely subjective. And the science is still inconclusive. Welcome to MS....
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby yeb4432 » Wed Nov 26, 2008 11:31 pm

Yes you point out obvious chemical and class differences which doesn;t mean anything to me either as an MS patient or to me as a provider for MS patients at a large MS clinic.

When I see a patient with firmly established MS who has broken through on Avonex therapy or had a reaction to it, I will not switch them to another ABCR med, why? Same effectiveness, and numerous studies for each injectable have consistantly shown this, as has my experience in the clinic.
PreCISe Study 2008 AAN2008

Neurol 2002 Apr; 51:481-90.
Source: Lancet. 2007;370:389-397

PRISMS Study Group. Randomized double-blind placebo-controlled study of interferon β-a in relapsing-remitting multiple sclerosis. Lancet 1998;352:1498-1504

BEYOND Study the Betaferon/Betaseron Efficacy Yielding Outcomes of a New Dose (Lancet. 2007;370:389-397)


As a patient, I dont care if m medication is derived from bacteria or synthesized in the lab. I care about two things in this order; 1 does the med work and 2 is it safe and what side effects can I expect.

Copaxone is safer and better tolerated than the interferons and its mechanism of action truly represents a cure for MS, unfortunately, it has only about a 30% effectiveness. It is very effective in patients in the early stage of the disease, before it is seeded with mylein fragments.

Unquestionably, I strongly recommend EVERYONE newly diagnosed to start on this. Low side effects and if it is effective I see it desensitizing the immune system. The key is starting treatment early.

Tysabri is unquestionably more effective than any of the ABCRs and save for Copaxone is probably safer.
Natalizumab plus interferon beta-1a for relapsing multiple sclerosis.
New England Journal of Medicine 2006; 354(9): 911-923.

A randomized, placebo-controlled trial of natalizumab for relapsing multiple sclerosis.
New England Journal of Medicine 2006; 354(9): 899-910.

Quantitative risk-benefit analysis of natalizumab.
Neurology 2008; 71(5): 357-364.


Of course the choice to start a medication is entirely the patients but what breaks my hear is when patients want to do things that down right risky to their future with MS by doing things like getting envolved in trials that may not work or do things like Bee Sting or elctro shock therapy.

Bottom line is that the risks of under treated MS FAR outweigh the potential effects of the damage under treated MS can do. Treating early and aggressively is the way to prevent future disability
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Re: terrified of tysabri

Postby NHE » Thu Nov 27, 2008 5:08 am

cheerleader wrote:The lipography/DNA is pure conjecture

Actually, I consider it to more of a hypothesis (much like many of the hypotheses that float around on this site). DNA damage is known to induce cells to enter apoptosis, the process of programmed cell death. Moreover, personal correspondence from a doctor at Teva to a MS patient suffering from copaxone induced lipoatrophy suggests possible treatments for the lipoatrophy. The nature of these treatments indicate that the lipoatrophy is likely related to activation of an apoptotic pathway. Scroll down to the part that discusses the co-injection of dexamethasone.

NHE
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Postby yeb4432 » Sat Nov 29, 2008 9:58 pm

hypothesis? Did you take time to read any of the studies that i referenced? hypotheses are things like that certain diets, vit D, bee stings, supplements ect alter the coarse of this utterly devastating disease. Facts are that disease modifying medications without question alter this disease, substantiated through studies.

Listen, I am not knocking alternative treatments. I think that they have their place, but to rely on these as sole treatment is dangerous and very risky because effectiveness is absolutely not substantiated. The same goes any "study" drugs. They might be great at some point, but ask the people that got Lmphoma from the early Rituxan trials or other serious serious problems from it, or the people that were so high on Rituxan.....

MS must be treated early and aggressively. Anything less is irresponsible and dangerous. Tysabri is extremely effective and safe, or at least much safer the potential risks of under treated MS.
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Re: terrified of tysabri... what to do?

Postby NHE » Sat Nov 29, 2008 10:14 pm

yeb4432 wrote:Listen, I am not knocking alternative treatments. I think that they have their place, but to rely on these as sole treatment is dangerous and very risky because effectiveness is absolutely not substantiated.

I don't know who or what you are addressing with this statement. I said nothing of alternative treatments in my posts to this thread. My hypothesis is that the lipoatrophy seen in some people using copaxone may be related to copaxone's clastogenic activity inducing apoptosis.

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Postby yeb4432 » Sat Nov 29, 2008 10:38 pm

listen, i am not knocking you or anyone else. alternative treatments have a place in treating MS. I guess I was confused to your statement about
lipoatrophy seen in some people using copaxone may be related to copaxone's clastogenic activity inducing apoptosis
I apologize. Copaxone is a fantastic med for early diagnosed patients, even with the potential lipoatrophy. I'll take lipoatrophy over active MS any day.

I am sorry if you took it another way.
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