Experiences with Tysabri

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Postby HarryZ » Sun Nov 14, 2010 7:54 am

ven wrote:hello everyone hope ut doin well??
i did the ccsvi and didnt work at all and i was block 90%..
so now am thinking of taking Tysabri whats ur opion pls...
thanks for ur help


When it comes to treating MS, the amount of recovery a patient can get often depends on the amount of damage to the axons the person has already suffered. If one has had the disease for a long time or the damage attacks have done is severe, then it may not matter what kind of treatment you do, the best you can hope for is slowing the progression of the disease.

It varies widely from patient to patient and is yet another reason why this lousy disease is so difficult to treat.

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19 doses thus far

Postby Xandarr » Mon Jan 31, 2011 11:45 pm

I have had 19 doses of tysabri. The first 6 months or so were much like when I was first diagnosed with MS. Very little problems, everything seemed fairly normal. However after that things started going downhill. I have been sick pretty much continously since taking it. I do have two school age children so to be fair not matter how clean we try to be, runny noses happen. I have had mini relapses and they seem to be happening with more and more frequency as time goes on. I get treated at the VA, and they seem a bit slower to respond to certain things. I am JC virus positive and frankly I am really getting scared about continuing treatment. I sprouted a cellulitis that went up my leg from a bruise from falling about 3 months ago. No rhyme or reason for it. Now I have lesions that have formed on the outside of my skin again with no real reason as to why. I of course have gone to my doctors nonstop over this, and they are puzzles but neuro doesnt seem to wan to stop my next infusion yet. Because I am tied to the VA for treatment, (no health insurance to speak of and now im unemployed) I feel very pushed into doing what the doctor suggests. I am just not comfortable with where things are going anymore. I am running scared. Ive also been getting really dizzy when i stand up, not sure if anyone else has been experiencing this, It does not stay just when I initially stand up I have a real moment of dizziness and see starts for about 2-3 seconds then it goes away and im fine.
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Re: 19 doses thus far

Postby NHE » Tue Feb 01, 2011 3:43 am

Xandarr wrote:I have had 19 doses of tysabri. The first 6 months or so were much like when I was first diagnosed with MS. Very little problems, everything seemed fairly normal. However after that things started going downhill. I have been sick pretty much continously since taking it. I do have two school age children so to be fair not matter how clean we try to be, runny noses happen. I have had mini relapses and they seem to be happening with more and more frequency as time goes on. I get treated at the VA, and they seem a bit slower to respond to certain things. I am JC virus positive and frankly I am really getting scared about continuing treatment. I sprouted a cellulitis that went up my leg from a bruise from falling about 3 months ago. No rhyme or reason for it. Now I have lesions that have formed on the outside of my skin again with no real reason as to why. I of course have gone to my doctors nonstop over this, and they are puzzles but neuro doesnt seem to wan to stop my next infusion yet. Because I am tied to the VA for treatment, (no health insurance to speak of and now im unemployed) I feel very pushed into doing what the doctor suggests. I am just not comfortable with where things are going anymore. I am running scared. Ive also been getting really dizzy when i stand up, not sure if anyone else has been experiencing this, It does not stay just when I initially stand up I have a real moment of dizziness and see starts for about 2-3 seconds then it goes away and im fine.


In the end, it's your body not your neurologist's. In my non-medical opinion, you have given Tysabri more than a fair shake.

It may be time for a second opinion especially considering that you are JCV positive.

Biogen wrote:If you take TYSABRI, it is important to call your doctor right away if you have any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days.


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Re: 19 doses thus far

Postby sou » Tue Feb 01, 2011 4:39 am

NHE wrote:In the end, it's your body not your neurologist's. In my non-medical opinion, you have given Tysabri more than a fair shake.


Anyway, in what basis are neurologists considered qualified in manipulating the immune system? Are dentists, too?
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby JoD » Sun May 22, 2011 4:40 pm

Hello All "MSers" : )

I am new to this forum and would like to introduce myself...
I am a 48 yr old female. I was diagnosed with MS 16 yrs ago. I have tried Avonex and Rebif and have been using Tysabri for about 5 years now. I have NOT experienced ANY noticeable side affects from the Tysabri so far. However, I am a bit suspicious that it may be the reason behind my moderate hair loss and changes in my hair texture and also my finger/toe nails. ??? UNK at this point. I have recently realized that using any chemical to treat a disease is only to prolong "Quality" of life because at some point the Kidneys & Liver are most definitely going to protest, then I will no longer have "Quality" nor "Quantity" :( What's a person to do?
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Tysabri

Postby Kellie » Thu May 26, 2011 7:53 pm

I was just woundering how it makes you feel? Do you feel sick at all during or after the infusion? I maybe starting this drug in a few weeks. I currently take copaxone & it has done very little & my MS is very active & I have over 20 lessions in my head. I have only been diagnosed with MS for less than a year. Any and all advice is welcomed.

Sincerely,
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Tysabri

Postby JoD » Sun May 29, 2011 9:08 am

Kellie:

Tysabri doesn't make me feel sick at all or any post infusion aches & pains! I take a large bottle of water with me to drink during the infusion to help keep my blood pressure up* & to help flush my kidneys.

*I take 50,000 IU of vitamin D weekly~Vit D lowers blood pressure as well as replentish the Vit D lost (People with MS have been found to have low levels of Vit D)

I like Tysabri above Avonex and Rebif because the lack of side/after affects.

Good luck with your Tysabri infusions :)

I just noticed you are in Billings, MT~Me too! Dr. O'Brien is my neurologist, who do you see? I am the only patient getting Tysabri infusions at the Billings Clinic & it would be nice to have company!
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Re: Experiences with Tysabri

Postby leetz » Thu Apr 05, 2012 10:30 pm

HELLO, everybody...been absent for awhile....just doing a check in to let you know whats been going on...okay did Wheldon protocol for like 8 months (this was promising, but while experimenting I got worse). I had only 2 lesions on my spinal-cord...didn't get MRI for about a year and change, then got one and had to stop Wheldon protocol. My Neuro informed me that I had countless lesions on my spinal-cord. I now use a wheel- chair inside the house as well as out-side...once in a blue I use walker to get to bathroom...other than that, I had my first Tysabri infusion last month and am due another one on the 17th of April...I did test JC Virus negative Amen!...so that was cool...Miss you guys and wanted to let you know what has been going on with me...BTW when I was on Wheldon protocol, I was under an enormous amount of stress (personal life) so I am unsure if the protocol was working or not...but with all the new lesions I was left with the option of Tysabri...very little side effects so far...just a little wiped out after (think the benedryl was making me tired). Gotta get up slowly (low blood pressure)...so that's all for now! Didn't forget about u all...much love!

Leetz
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Experiences with Tysabri

Postby euphoniaa » Fri Apr 06, 2012 5:48 am

leetz wrote:HELLO, everybody...been absent for awhile....just doing a check in to let you know whats been going on...okay did Wheldon protocol for like 8 months (this was promising, but while experimenting I got worse). I had only 2 lesions on my spinal-cord...didn't get MRI for about a year and change, then got one and had to stop Wheldon protocol. My Neuro informed me that I had countless lesions on my spinal-cord. I now use a wheel- chair inside the house as well as out-side...once in a blue I use walker to get to bathroom...other than that, I had my first Tysabri infusion last month and am due another one on the 17th of April...I did test JC Virus negative Amen!...so that was cool...Miss you guys and wanted to let you know what has been going on with me...BTW when I was on Wheldon protocol, I was under an enormous amount of stress (personal life) so I am unsure if the protocol was working or not...but with all the new lesions I was left with the option of Tysabri...very little side effects so far...just a little wiped out after (think the benedryl was making me tired). Gotta get up slowly (low blood pressure)...so that's all for now! Didn't forget about u all...much love!

Leetz


Hi leetz - it's good to see you back posting at TIMS, but not to hear of your trials & tribulations in the meantime! I hope you'll post about all your experiences on a separate thread (or more than one), because this post will just get lost in yet another of the giant, cumbersome threads here, and many posters seldom venture out of their favorite sub-forums. :smile: You may get lots of input on the Antibiotics forum.

It sounds like you have lots to talk about, and I hope the Ty works out for you. Personally, it freaks me out that they so often give Benadryl with it, since that would only mask a severe allergic reaction to Tysabri, and, like you say, it seems to have its own side effects to confuse and confound your Ty results. It would be like me drinking a bottle of Benadryl so I could finally go eat shellfish (my main allergy) at Red Lobster with my friends without ending up in the ER. :smile: Please keep alert to that! Plus, my past experience suggests a possible allergy to antihistamines in general, so that makes it even a dumber idea for me.

Best to you, and I wish you much improvement. :smile:
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Experiences with Tysabri

Postby clivemilton51 » Wed Sep 26, 2012 7:21 am

From personal involvement with the clinical trial for Tysabri, my wife was in the trial, I discovered through extensive research that the common denominator between Tysabri, Rituxan and docataxel with PML is POLYSORBATE 80. It is the only chemical common to all three drugs and all three have been categorically linked to PML. However, no one is listening, especially Biogen Idec, Inc. the makers of both Tysabri and Rituxan.

Polysorbate 80 (PS80) and its derivatives facilitate drugs in crossing the blood brain barrier (BBB) resulting in additional lesions in the brain. Ergo PS80 by itself can breach the BBB and cause damage. The JCVirus, recumbent in the liver is released into the bloodstream when PS80 is present leading to PML.

It is high time that the FDA investigated this issue, but when I testified at the public hearing when Tysabri was removed from the market my comments were immediately dismissed because I am not a doctor. However, I am a very concerned husband who's wife was severely injured during the clinical trial simply because there was no allergen testing for each of the components in the protocol. On top of that the lead physician did not report the appearance of rashes to either my wife or MedWatch and did not remove her from the study. He re-infused her 3 times making things much worse, so bad she ended up in the ER and she has suffered from these intensely painful rashes for 10 years and is now permanently hypersensitive to Polysorbate 80. PS80 is thousands of products including ice cream and shampoo. It is an emulsifier and causes the release of histamines which results in rashes and itching. In fact many OTC drugs like Bendryl, an antihistamine, is coated with PS80.

If my wife eats any food that has PS80 in it then she gets the rashes back and they can be debilitating. Of course eating out is like playing Russian Roulette.

I would be interested in hearing from anyone who is interested in learning more about Polysorbate and PML or would like to share their experiences with me. Now that there have been 202 cases of PML and 44 deaths I think it is time for the FDA to open an investigation.
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Re: Experiences with Tysabri

Postby leetz » Tue Jan 15, 2013 2:25 pm

thank you all for your input! God Bless :)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: Experiences with Tysabri

Postby HarryZ » Tue Jan 15, 2013 3:10 pm

However, no one is listening, especially Biogen Idec, Inc. the makers of both Tysabri and Rituxan.


Unfortunately, that's nothing new for Biogen and how they operate. For years I've been saying that Biogen is interested in only one thing....$$$$. Yours is but one of several stories I have heard over the years involving this company and it isn't going to change.

I've now learned that their data on BG 12 (new unapproved as yet oral drug) is starting to show some alarming problems that will probably get swept under the proverbial carpet.

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Re: Experiences with Tysabri

Postby joannanyc » Mon Jul 29, 2013 7:42 am

My daughter has had MS for 11 and a half years, since 15. From 15 to 18 she was on Betaseron, and then Rebif for a few years, though not consistently, as she would get flu symptoms and avoid taking it as often as she could get away with it. She was taking Copaxone for 3 years, until 2012, which seemed to do nothing. I had wanted the doctor to try something effective for several years, but her neuro at this time was clueless, not even treating exacerbations, unless so bad as to require hospitalization. For a few of those years, daughter was feeling OK and didn't really start deteriorating until 2011, so she just went along.

Last year, she began Tysabri, after we sought out a new neurologist. Having done the research, we insisted on a JC virus test, but they were ahead of us. Apparently the company manages everything now, coordinating with the doctor to get the patient tested and setting up where infusions will be given. She had infusions monthly the first 6 months, then changed to every 6 weeks. There have been no major flareups in the last 12 months and she has been feeling stronger and having more energy most of the time.
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Re: Experiences with Tysabri

Postby HarryZ » Mon Jul 29, 2013 9:18 am

Last year, she began Tysabri, after we sought out a new neurologist. Having done the research, we insisted on a JC virus test, but they were ahead of us. Apparently the company manages everything now, coordinating with the doctor to get the patient tested and setting up where infusions will be given. She had infusions monthly the first 6 months, then changed to every 6 weeks. There have been no major flareups in the last 12 months and she has been feeling stronger and having more energy most of the time.


The CRAB drugs, which your daughter was on for several years, have perfromed much better in the sales department than they have for MS patients' health! Some people wonder how drugs like these continue to be used on MS patients. In the UK, they did a study on these drugs' long term benefits and were willing to pay the companies who made them based on their effectiveness. The study concluded that the drug companies would have to pay the government for the patients to use them!!

I'm glad to hear that your daughter is doing better on Tysabri. But remember, this is one powerful drug that really plays with your immune system. Long term use is a big concern these days. I hope your daughter does well in the long run...she is so young to be suffering from this lousy disease.

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Re: Experiences with Tysabri

Postby leetz » Fri Aug 02, 2013 10:54 pm

Hi everyone... I got Tysabri for 14 months and decided to stop taking the infusions as I did not feel the little bit of "lift" it once gave me. My EDSS is 5.5 and I have RRMS. I have been in a wheel chair for about 2 years now, can still stand and walk baby steps in the bathroom with assistance an make it down the stairs 5 of them with assistance...not up them most of the time. Unfortunately, Tysabri didn't do very much as far as getting better and I had about 2-3 relapses while on it, it may have kept me here this I do not know. It was a personal choice to be off of it as it gets frustrating not seeing progress in a good way.

Ok, been off of Tysabri with-out any Multiple Sclerosis medication for about 2 months now (my Doc. wanted my system to be clear of Tysabri before trying another med, and has been watching me closely)...so far so good Thank God!

While I was on Tysabri the "little-lift" I would get was like the fatigue was not as bad, nor muscle tremors (they still happened but not as often). I would be extra tired for the first day or two after tysabri and it was strange because I could feel my body needing it about a week before my infusion was due. By needing it, I mean the "little-lift" would dissipate as well as more tremors. I hope this help's anyone reading this...any questions feel free to ask :)
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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