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Is anyone on Tysabri or LDN?

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Posted 7/6/2007 12:32 AM (GMT 0)
I'm so glad that Tysabri is out there, but it looks like at this time it is not going to be an option for me. They called today and said my insurance, who said I would be covered, now says I am not because it is not yet a "schedule something or other drug" with the government. The Tysabri people are still trying to figure out what happened with the false information.

I talked to a nurse at my MS clinic, and she said there is only one person there that is currently on Tysabri, because most plans will not yet cover it. Turns out this lady pays for it herself! Ouch! It's like $40,000 a year!

Anyway, I hope in the near future they will approve it, and in the meantime I am doing okay with the Betaseron, I think. I was just enrolled in a research study on Betaseron and cognitive changes, I'm looking forward to seeing where I'm at, because I feel a decline in my functioning.

Shar
Posted 7/6/2007 1:38 AM (GMT 0)
This is a typical insurance ploy Shar, as they are trying to avoid paying for this efficious drug... the "government" is Medicare, and Medicare pays 100% for Tysabri under part D (drug prescription) or 80% under part B (outpatient procedure/infusion).

Furthermore, if the treating doctor recommends that you need Tysabri (Natalizumab), and it is not on the insurance company's drug Formulary plan, most plans will make an exception, and cover it, or you can appeal the decision and they usually cave when that happens too. By the way, most insurance companies are covering Tysabri fully... Also, if the insurance plan is a Major Medical plan, most infusions are covered under a Major medical plan.

If patients are armed with correct information and the truth, we can effectively fight back as needed.

I believe that a patient should do this anyway, become their own Patient Advocate, no matter which therapy they choose. After all, it's our disease, our disability, our life, and we should have our choice of therapy.

This is also untrue, the cost of drug Tysabri for the entire year (13 infusions) is $28,400.06 ($2184.62 per month) ... see: http://www.elan.com/Products/united_states/tysabri_pricing.asp which is comparable to the monthly cost of each of the lesser effective ABCRs...plus we don't have to stick ourselves, LOL.

In my humble opinion, Tysabri is more than twice as effective for less than twice the cost!

Nevertheless Shar, all my very best wishes on your Betaseron therapy... I pray it keeps working!

To Gretchen:

Thanks so much dearheart for your very kind words, good luck to you with your Copaxone treatments and I pray they keep working for you too!

Alright all you Youngins, (smiling) I may be back later, take care now.
Posted 7/6/2007 11:20 AM (GMT 0)

Lauren

Thank you for sharing and answering all my questions-- My husband and I were talking last night cause of the issue of wanting to have kids or not (we aren't sure-- we are total dog people)  He agrees that either Tysabri or LDN is the way to go for me... My mom said to try LDN first and if it doesn't work then do Tysabri but I do not know-- i read that pregnant women with MS feel the best then-- wonder if this is true

Shar-- I am sorry to hear that your insurance denied your meds but I know it can be fought-- have done it in the past with hospital needs... feel free to ask any questions

Gretchen-- Hey there!  Hope your therapy is going well and you are doing good..

Hugs Hope and Peace

Zoe Butterfly3

Posted 7/6/2007 6:48 PM (GMT 0)

Lauren -- do you know anyone else on tysabri? 

Does anyone oknow anyone else on tysabri?

Posted 7/6/2007 10:09 PM (GMT 0)
LDN works to improve some symptoms of MS, but -- despite the advocates of the drug who will tell you otherwise -- there is no evidence to suggest that it does indeed do what Tysabri, or the other interferon drugs or Copaxone will do -- which is to slow the progression of the disease.

Some folks take the LDN along with some of the other disease-modifying drugs (apparently it can be taken with some of them, but not others..I don't know which). There is anecdotal evidence that it helps with bladder problems (which is what KIMC said), fatigue, and leg weakness,

but until the proper, double-blinded tests are completed (and the National MS society, among others, has funded some proper testing), I'd be wary of relying entirely and solely on it to slow progression of MS.
Posted 7/6/2007 10:18 PM (GMT 0)
Hi Lauren. Sorry, I forgot to mention I am in Canada...my bad. I guess it's different up here.
I checked out the link for the cost of Tysabri, unfortunately that is the wholesale cost. eyes

Thanks again for all your information, I can't wait until I can get on Tysabri.
Posted 7/6/2007 10:32 PM (GMT 0)

thank you for the info on LDN-- I hope they do fund studies soon-- if it turns out it helps like the others do it will be so nice to have a cheaper drug that is a pill--

i am leaning towards tysabri-- mostly concerned about the cost and if insurance will cover it not to mention i just got married and we don't know if we want to have kids-- tough decisions-- but if LDN improves all the symptoms said that would be awesome!

Zoe Butterfly

Posted 7/6/2007 11:34 PM (GMT 0)
I happen to agree with uppitycats, as LDN is not FDA approved for MS and needs to be in a controlled study group....as I said before, it works for some and not for others. What concerns me most though is that MS disease activity still occurs while patients are deciding whether or not to go on LDN, and if they do but receive no benefits from it, this is time that they wasted, as MS is a progressive disease. Just my humble opinion though.

Lauren -- do you know anyone else on tysabri?

Yep, I sure do... too many to count as a matter of fact, because many MS patients have been e-mailing me regularly (since 6/06) with their Tysabri experiences and questions.

Tysabri Patient Progress Reports can also be found at: http://www.mspatientsforchoice.org/, and these reports are sent in monthly by the patients themselves, voluntarily.

To Shar, okay you're in Canada which makes sense as to why you are having trouble accessing Tysabri. As far as I know, Ontario is the only Providence were Tysabri is paid for by your NHS.

And the price that is listed on the website that I gave you is for the U.S. in U.S. currency. That website does not provide a list for the cost of Tysabri which was submitted to other countries.

Please note though that NICE for England and Wales' recently REVERSED their negative appraisal report of Tysabri, and are now recommending Tysabri to their NHS. Tysabri is the ONLY DMD for MS which has EVER been recommended to the NHS smile and it will be costing approximately 14,000 pounds per year per patient.

This favorable decision will most likely help other MS patients in countries with socialized medicine. For example, the SMC for Scotland that previously denied Tysabri is in the process of reversing it's decision, and that's due out in August 2007 (as has been reported by the media).

I hope this information is of help to all of you.
Posted 7/7/2007 1:45 PM (GMT 0)

Lauren-- ok i am really getting convinced -- i mean everyone seems to think it is almost a cure-- truthfully since i was unable to find any-- have you ever known anyone with negative experiences with tysabri-- i would like to know-- not that it will stop me but i feel like i need to hear it all

thank you so much

pain is bad today my ms hug is in my whole torso front an dback--ouchy!!

Zoe Butterfly3

Posted 7/7/2007 8:37 PM (GMT 0)
Yes of course I have, I would be remiss to say that I haven't, but out of the approximate 13,000 patients that have currently received Tysabri, and from the hundreds that have written to me personally, my best guesstimate would be that approximately 10 patients have reported to me the following: 1 severe allergic reaction to Tysabri so they can't take it anymore; a couple of slight skin rashes that have cleared up and they have continued to receive Tysabri infusions; headaches shortly after the infusion, which have also cleared up a day or two after the infusion; a couple of cases of diarrhea that these patients initially attributed to receiving Tysabri, however, it was later determined that these bouts of diarrhea occurred during the flu season and had nothing to do with Tysabri, and which those patients continued to receive Tysabri therapy, and so on...

I hope this information helps!

As to your increasing MS symptoms (MS hug, pain, etc.), do you happen to live where the heat/humidity has been rather high lately? Where I live, it's been in the triple digits lately, and needless to say, I've been staying inside where it's cool so that my MS symptoms don't become aggravated.

Take care now, (((((((hugs ))))))
Posted 7/7/2007 9:13 PM (GMT 0)
Lauren

I figured there had to be some patients who had trouble but that is a good count.

As for my symptoms, which go up and down right now, I live in western NY -- which has been unusually hot and humid for this area. The humidity actually seems to bother me more than the heat-- humid days are the worst--they actually make my copaxone sites get all irritated again. I stay inside as much as I can but with an energetic dog that is hard-- plus we have a one bedroom smallish apartment so i get stir crazy and it gets hot in here too--
Posted 7/7/2007 9:36 PM (GMT 0)
Apparently, it seems to be causing your MS to flareup was well... sounds like you might need a cooling vest, a cooling scarve, and cooling wristbands as well. They really do help when the heat and humidity can cause pseudo-exacerbations...,

The Multiple Sclerosis Association of America (MSAA) will provide them to you for free... just call their toll free phone number at (800) 532-7667. If I'm not mistaken, it takes a couple of weeks for you to receive them in the mail, therefore I would suggest you not wait.
Posted 7/8/2007 2:05 AM (GMT 0)
My wife just completed her 3rd Tysabri infusion. She had been taking the CRAB injections for 10 years and had been getting progressively worse.

The absence of the side effects of Betaseron alone has helped her feel better. The infusion center is seeing more patients weekly taking Tysabri. She's due for an MRI as she is her doctor's first patient taking this med.
Posted 7/8/2007 12:38 PM (GMT 0)
Lauren

Thank you for the tip-- I will call them and see what I can get-- supposed to be 90 today and humid that is hot up here in western NY who is know for our cold and snowy winters-- Had a great day yesterday (weekends are easier for me-- without having to work) we were at my mother in laws and running the puppy around the field -- i was actually able to run then my hubby gave me a massage-- it was helpful but he said he could feel the lesion on my spine--

New Poster (horrible with screen names) -- Thank you for posting about your wife-- I was hoping to hear about more people on tysabri-- Does she experience any side effects from it? I know how she feels (about betaseron) I feel better just not having the side effects of copaxone-- although 3 weeks later those pesky sites still give me trouble in the heat and i have tissue damage in some spots... i am not currently on any meds-- flushing out so i can do tysabri i hope-- so she has seem reslults ---I would love to hear more

Hope Hug and Peace

Zoe Butterfly
Posted 7/8/2007 8:12 PM (GMT 0)
My wife is much more tolerant of heat since starting the Tysabri. I have noticed that she seems less ill and more motivated. This is strictly anecdotal. She has no side effects from Tysabri, and even looks to go out and do things immediately after the infusion.
Posted 7/8/2007 8:27 PM (GMT 0)
i would love to be tolerate of the heat... it sounds like she is doing well-- glad to hear she is more motivated-- if you don't mind me asking when was she dianosed and what were her current or persistent symptoms and have any improved??

Posted 7/8/2007 9:20 PM (GMT 0)
Yep, I'll bet it does make her feel a whole lot better not be injecting the interferon anymore... it is my understanding that they are adding approximately 300 patients a week to the Touch program for Tysabri as the patients are switching their therapies.

Again it's just wonderful to hear that your wife is doing well on Tysabri.

Zoe: I'm glad you are going to call for the cooling items... I really hope they help you in the heat.
Posted 7/9/2007 11:04 AM (GMT 0)
lauren-- i am calling today-- 3 days of a high of 90 and humid-- yuck!! thanks for the tip again--i hope that you are doing ok in the heat over there-- luckily we have a wind thing going on to which does n't make it seem as hot-- today i will be at work i am very tired from all the activity with family being here from the wedding (some are still here) but at least it is air conditioned in there -- as long as being on the puter doesn't bug me i should be ok--

take care

hugs hope and peace

zoe butterfly
Posted 7/9/2007 1:58 PM (GMT 0)
Wife DX'd in 1991. She had tingling in extremities. She said that she had similar tingling for a period 9 years earlier.

Her walking and balance are compromised by a bulging disc. She uses a walker and had done so as an RN while working.

I'm amazed by how many healthcare professionals are stuck with this disease! I can also tell you that my wife is an inspiration to everyone who knows her, strangers have stopped and told me the same.
Posted 7/9/2007 2:18 PM (GMT 0)
sounds like a similare story to mine-- is she still working
Posted 7/10/2007 4:42 PM (GMT 0)
does anyone take b12 supplements?


malachy-- sorry i reread your last message and see your wife is an RN--

I would love to hear from her too..



To all who post here and this site in general-- what a blessing i have come upon-- you all give such great feedback, support and advice -- i have felt better just not feeling so alone in this -- so thank you all
Posted 7/11/2007 2:11 AM (GMT 0)
Zoe, wife took a disability 3 years ago. If I pushed her she would work. She may be better now than when she stopped working. I don't know?

She's a bad girl when it comes to structured physical therapy. Shopping therapy is another story.
Posted 7/12/2007 10:43 PM (GMT 0)

Hi, I'm new to this site, so bear with me.

I've been taking tysabri for 5 months, and I feel gradual improvement. It's little things, like using my cane less, and having better balance. I hadn't made the connection of greater tolerance to heat, but the fact that i survived a 97 degree day yesterday makes me think that has improved as well.

I have a question - over the past few months I've had periods of dizziness and a 'seasick' feeling. It's not all the time, but it lasts for several hours, a few days a month. has anyone else on Tysabri had these side effects? It could be something else. I am getting tested for antibodies next week.

Posted 7/13/2007 2:05 AM (GMT 0)
not on tysabri yet but i have that feeling from my disease-- sounds like the tysabri is helping though-- hope you feel better and tests go well
Posted 7/13/2007 3:08 AM (GMT 0)
Hi Stace...

I'm not a doctor, but the dizziness and nausea you are feeling could quite possibly be "hypersensitivity reactions/infusion-related reactions", and are listed on the Tysabri Patient Medication Information Guide/Label (see page 15): http://www.biogenidec.com/site/TYSABRI-PI-MedGuide.pdf

"Infusion-related reactions most often associated with persistent antibody-positivity included urticaria, rigors, nausea, vomiting, headache, flushing, dizziness, pruritus, tremor, feeling cold, and pyrexia. Additional adverse events more common in persistently antibody-positive patients included myalgia, hypertension, dyspnea, anxiety, and tachycardia."

Stace, take special note if you haven't already - also on page 15: "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".

Are you pre-treating for 30 minutes prior to your infusions with Benadryl? I pre-treat with Claritin approximately 30 minutes before each infusion, as Benadryl does nothing for me, and I've had zero side effects.

A few others have had some of those side effects too Stace, but once they pre-treat with Benadryl or Claritin, and/or slowed the drip down to an hour and a half (instead of the regular hour), they no longer had any of these problems that you're experiencing.

I'm sure your neuro knows what he/she's doing. And hang in there dearheart,

Lauren
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