Here is my Tysabri update as shown in the following graphs. It is important to note that although these graphs may force a conclusion about Tysabri performance, the reality is that I need at least 25 infusions before anything statistical can be derived.

On a personal note, I feel as if my overall muscle stiffness has increase and if I do not stretch thoroughly several times per day, then I walk around like Frankenstein.

Generally, I am doing fine. The stiffness has been a growing problem, as have the recurrent UTI's. Maybe I should invest in the company that makes Cipro because it works wonders!

-Vic

Attached Thumbnails

 

Barb, I was trying to find the info on whether you need a MRI according to the TOUCH protocol (and didn't find it), but I did run across this information (that I think) you were asking about earlier in the thread:

Do not receive TYSABRI if you:

• have PML
• are allergic to TYSABRI

Allergic reactions including serious allergic reactions. Symptoms can include:

• hives
• chills
• itching
• rash
• trouble breathing
• nausea
• chest pain
• flushing of skin
• dizziness
• low blood pressure
• wheezing

• Serious allergic reactions usually happen within 2 hours of the start of the infusion, but they can happen at any time after receiving TYSABRI.

5.3 Hypersensitivity/Antibody Formation
Hypersensitivity reactions have occurred in patients receiving TYSABRI, including serious systemic reactions (e.g., anaphylaxis) which occurred at an incidence of <1%. These reactions usually occur within two hours of the start of the infusion. Symptoms associated with these reactions can include urticaria, dizziness, fever, rash, rigors, pruritus, nausea, flushing, hypotension, dyspnea, and chest pain. Generally, these reactions are associated with antibodies to TYSABRI.

If a hypersensitivity reaction occurs, discontinue administration of TYSABRI and initiate appropriate therapy. Patients who experience a hypersensitivity reaction should not be re-treated with TYSABRI. Hypersensitivity reactions were more frequent in patients with antibodies to TYSABRI compared to patients who did not develop antibodies to TYSABRI in both MS and CD studies. Therefore, the possibility of antibodies to TYSABRI should be considered in patients who have hypersensitivity reactions [see Adverse Reactions (6.2)].

Antibody testing: 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 six months) may be transient and disappear with continued dosing. Repeat testing at three 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.

Experience with monoclonal antibodies, including TYSABRI, suggests that patients who receive therapeutic monoclonal antibodies after an extended period without treatment may be at higher risk of hypersensitivity reactions than patients who received regularly scheduled treatment. Given that patients with persistent antibodies to TYSABRI experience reduced efficacy, and that hypersensitivity reactions are more common in such patients, consideration should be given to testing for the presence of antibodies in patients who wish to recommence therapy following a dose interruption. Following a period of dose interruption, patients testing negative for antibodies prior to re-dosing have a risk of antibody development with re-treatment that is similar to TYSABRI naïve patients [see Adverse Reactions (6.2)].

http://www.tysabri.com/tysbProject/t...uch/index.html
(found in the Patient Safety tab)

Cherie

I jsut heard from my neuro's nurse and she said my blood work came back positive for antibodies. He wants me to continue treatment for 3 more and then be retested because they said this could be temporary. Now I know why I was having reactions during my infusions. So i guess I will see how my infusion goes next Wednesday.

I am so upset right now; I can't stop crying. Since I have had problems with betaseron and copaxone too I am out of options.

Barb

I am in the same boat you are but I am not out of options. There are other treatments out there. Don't get so discouraged.

Cytoxin
Novantrone
IvIG

You might also look into applying for a clinical trial, which is exactly what I did.

Think positive...

Barb, This is not the end of your options!

First, there's a difference between persistent and transient antibodies. You absolutely may have either. Usual protocol is to continue to treat if benefits have been seen, despite a positive test, and re-assess after three months, and you state that you have seen positive benefits. Make sure that you pretreat with benadryl or claritin and make sure they are running the IV at a slower rate. In many folks it makes a HUGE difference. Tell your neuro you want the MRI at 6 months to see whether it shows improvement, to help you decide on your next move, because of the problems you have experienced.

Second, despite how you may feel now, as Av8rgirl stated, there are other options available. Investigation into MS treatment is continuing to move forward after being stalled for YEARS! More is known about MS today and there are more meds in the pipeline than ever before, some with excellent data coming out of the trials! Look at www.clinicaltrials.gov for more information on trials for MS.

There are many folks here who have been hearing "A cure in our lifetime" for years. This IS going to happen at some point. With the advances in science in the past decade, I truly believe we are closer than ever to figuring out the whats and whys of MS. I have an up and coming Neuroscience/Molecular Biology Masters candidate in my family and she has a personal stake in this fight. It's one of the reasons she has chosen the path she is on, as a researcher.

Until it's figured out, there will continue to be better treatments designed to delay progression and reduce relapses. That's what we have now and despite the drawbacks and flaws of each drug available, and the fact that they do not work for everyone the same way, we DO have options.

When the FDA posted that warning last month, we immediately contacted the neurologist. We were told that he had already done a baseline liver function test as part of my wife's blood work BEFORE starting her on Tysabri. He told us that routine liver function tests were part of his protocol and that he expected to have her tested on a regular basis. When we persisted, he ordered another liver function test immediately (this was after her 4th infusion).

He also assured us that this is old news - that the FDA finally got around to posting it - but that most neurologists had already been aware (for years) of Tysabri's stress on the liver.

JJ

For those of you who went to the original www.tysabri.com site and found NOTHING on it of benefit, please take a look at it now and comment please!

It's a work in progress, no information for Crohns patients yet, but it's FINALLY got SOMETHING on it!!!

Thank you everyone for your responses. I know that this response to tysabri may be transient. I just was feeling overwhelmed after getting the phone call from my neuro. I know that there are other meds out there that I can possibly try if I continue to present with antibodies.

My next infusion is on Wednesday. I am going to have a benadryl iv one half hour prior to the infusion and they are also going to slow it down.

Av8rgirl:

You mentioned in a previous post that you have access to information regarding location of TOUCH infusion centers. Would you be so kind as to point us in the right direction in locating other centers in our area?

Not that we're unhappy with the center we're using - but we'd like to see if there are any centers closer to home. We're in Pittsburgh, Pennsylvania.

Thanks.
JJ & LL

Let me see what I can find out for you.