Newly diagnosed - straight to Tysabri?!?

[caringcanuck]

Hello,  I have been very newly (June 6th) diagnosed with RRMS, based primarily on brain and spine lesions with only one round of numbness 4 years ago however with cerebral spinal fluid showing an overwhelmingly positive result for MS.  My neurologist has held off recommending any drug treatment over these last 4 years that he has been following me on the basis that there were no further neurological episodes and there still isn't anything dramatic - just some fatigue, etc.   Now, based on the last MRI, he has officially diagnosed me and is recommending that I go on Tysabri infusions.   From what I can tell on this forum, it seems like he's hitting an ant with a sledgehammer.  It seems very unusual for people to be prescribed Tysabri right off the bat.    I am very confused as to what drug to go on, if any.   His first choice for me is Tysabri, followed by Gilenya, followed by Copoxone.    I have a Naturopath (who actually has MS) who is vehemently against all of the drugs and questions their efficacy.    The neurologist says it's my decision but I feel completely unqualified to make such an important decision.    Any opinions from those of you who have lived with this longer than me and have more knowledge and wisdom than me would be so greatly appreciated.   Thank you.

[Corriel]

This heat is nasty for sure, I am glad you have a decision for your treatment so best of luck!

Corrie

[caringcanuck]

Hi everybody!  I've been away in Nevada and Arizona in 110+ temperatures for the last two weeks and for the first time ever felt  the effects of heat.  now back in greater Toronto area and they're calling for it to be the hottest week so far this summer!   Anyway, I wanted to give you all the update on the drug decision.  I decided to go on Tysabri but now can't because the JC test came back positive and the titre test came back too high so the neuro advised against Tysabri now.   So now I'm moving on to Gilenya (1) because it's a pill not a needle and (2) because it have a significantly higher efficacy rate than the other dmd's.  I know Gilenya has it's own set of risks and issues but from I can tell, all the drugs do.  Any thoughts on Gilenya?  good or bad?   thanks, Jil

[Lulu54]

LDN is low dose naltrexone - a drug used to treat opoid dependency.  It appears LDN may help with symptoms but it does not treat the disease like the  DMDs.   You can read more at -

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/complementary--alternative-medicine/low-dose-naltrexone/index.aspx

St Barnabus needs to be investigated for charging that price. My infusion center costs are covered 100% by my insurance, but if it didn't the billing from the University medical center I have it done through is only for about $600.  The amount you are billied is horrible.

Laura

[Antalya]

What is LDN?  

My United Health Care secondary is from AT&T and is lousy.  It pays for basically nothing - I have like a $6,000 deductible - in network.  Out of network something like $13,000 or more.  It's so much I don't even pay attention.  

Medicare is pretty good - but the problem w/ Tysabri is that  St. Barnabas Hospital charged about $6,000 to administer the infusion!  And as I mentioned, I only paid $10 for the actual Tysabri.  Outrageous.  Infuriating.

Yes, definitely was having my chain jerked - and then they tried to strangle me with it.

[caringcanuck]

Thanks to all of you that have responded and especially those with direct experience with Tysabri.  I really appreciate the input.   I went yesterday for the JC assay test so we'll see if I'm negative or positive and go from there.  I spoke to the nurse at the MS Clinic and she said that I am fine to go on any of the drugs and it is truly my choice.  She said the neuro recommended Tysabri  simply because it is proving to be the most effective drug on the market right now and said that if you are JC negative, the risk is quite low.  So based on all the research I've done I'm leaning toward Tysabri as long as I'm JC negative.  I'll know in a couple of weeks and go from there.   Thanks for all the support!

[Guitar_grrrl]

More and more, Tysabri is used as a first line DMD, as long as you're JCV negative.

http://www.medscape.com/viewarticle/778104

I'm one of the lucky folks who is JCV negative, and I've been really happy with Tysabri in the 3 years I've taken it.  No major flares, very mild, slow increase in disability.

I also feel a little more energetic on a Wahl's style diet, but that's just me - YMMV.

Good luck with your decision.

[Luna143]

There are many ways to treat MS and everyone reacts differently to to the treatments.  When I was dx I was adamant about not starting any med right off the bat - but fear and a persuasive husband convinced me to take Avonex.  After 6 months I was done - the side effects were brutal for me...like having the flu 5 days a week, 2 almost normal days and then injection day and the cycle would repeat.  I am currently on LDN and a focused diet. My neuro would prefer I be on Copaxone, but my last MRI was stellar and he was supportive of my decision to forgo traditional meds - at least for now.  I opt for nutritional meds as opposed to traditional meds - it is working for me.  Do you research and ask lots of questions. The consensus on medhelp is for traditional meds, I am in the minority.

[Hibbles]

Hi there, it's nice to meet you.
My MS specialist recommended Tysabri for me for several reasons, which was going to be my first DMD. However, I elected to not take it because I am JC virus positive.
However, I have really paid for not treating the MS as quickly as possible. Doctors typically want to start treatment as soon as possible, and if you can try Tysabri, go ahead and get a second opinion if you want, but please get on something. I was too scared to treat everything right off the bat and I think I have permanent MS hug now.
You may like this part, because he also recommends 2,000 IUs of vitamin D daily.I am no doctor whatsoever, but I think you should go ahead and try Tysabri or something, and make sure to keep your D levels high. Establish a relationship with a doctor you trust, but, trust me..time is of the essence.

[SarahL2491]

ojibajo is so right and many times money is the issue.  My Tysabri cost me nothing but the other drugs would cost me more than I could afford.

[Ojibajo]

It can't hurt to get a second opinion. My doctor always told me that if a doctor gets upset because you want a second opinion than that's not a doctor that you want to go to anyway.

I have also always been told the Tysabri was one of the drugs you go on when you fail on the others, but that being said everyone's MS is different as is their experience with DMDs.

I started on Avonex and had no side-effects.I felt that it was the most aggressive in keeping relapses away. which is one of the reasons that I chose it. My neuro thinks that all DMDs are pretty much the same it just depends how often you want to inject. So I don't know.

I don't think that you should feel pushed to try one med over another. You should definitely do you research as well and feel comfortable with your choice.

[SarahL2491]

each of us has different problems with any DMD

I have medicare and united health care and my Tysabri costs me nothing.  It's an outpatient procedure.  Someone is jerking your chain

Medicare and united health will send you statements (slowly) showing what the drug cost and what the divisions were with medicare and united health care....................then if you are billed by physician (don't pay anything til you get a BILL for all 3 places........more than medicare says, you don't have to pay and can file a dispute with medicare......

I had problems for about 6 months and neuro and I worked thru each of them and my last year have not had any problems with side effects.  Your fatigue could be caused by MS

Tysabri does not do away with the little nuisance problems, only help protect against future flares........sometimes its common to have flares the first year til it really kicks in........I can tell now that my flares are slowing down............

[Antalya]

Hi - I just wanted you to get input from someone who had a bad experience with Tysabri.  I would NOT start with this.  In the United States it doesn't give you the most bang for your buck - my copay for Avonex for 3 months was something like $60.  My Tysabri cost, after Medicare and United Health Care AND getting Tysabri assistance for the drug (I could get it for $10) ended up being over $600 PER INFUSION.  I asked and asked and asked what the charge would be before I started - and they said after insurance probably $50-60. They would NOT give me a number. They didn't bill me for the first infusion until I had gotten 3.  Therefore owing almost $2,000.  HORRORS for someone on disability.  Fighting it.
Plus, I stopped taking it.  After 3 infusions, got a UTI.  Exhausted - fell asleep while driving - wasn't diagnosed with UTI until month 5.  Skipped a month.  One more infusion.  One more UTI.  Scary --- because of the MS I couldn't tell I had one.  If you miss the UTI, can go to your bladder and be very dangerous.  
Fagettaboughtit.  Avonex is once a week, very effective and much more convenient.  Once a month infusions take like 4 hours and wipe you out.  Yes, Avonex has side effects, but they do get much better and is just more manageable.  If you hate the needle, try to find someone to give it to you.  That's what I did.  
Good luck, but I think Tysabri is only after none of the other meds work.  I'm on Tecfidera now.  A PILL after 15 years of INJECTIONS.  Very happy.  No side effects.
-------Marcia

[SarahL2491]

I started with Tysabri as my first DMD and I believe your neuro can write an override letter requesting it.

I've been on it for a year and a half AND tested JC+ from the beginning.  After getting used to it, I love my Tysabri and will stay
on it until my CSF proves not safe

[Lulu54]

I didn't go straight to Tysabri but my neuro said recently that if the JCV Virus assay test had been available at the time, he would have put me on it.  Of all the DMD's it has the highest efficacy rate.

As for treating your MS, only you can make that decision. But please consider that you are being offered the best chance to keep this disease quiet and doing the least amount of damage.  We can go a long time between relapses with RRMS and you might not be so happy with yourself down the road it you don't take treatment now.  

Good luck with this next step in making a decision -  and welcome to the forum. best, Laura

[caringcanuck]

Thanks Kyle!  Good to know that I'm not the only one to go straight to Tysabri.  It was freaking me out a little.  And yes, you're bang on re: the CIS thing.  And double true re: me and needles....the less the better ;-)  

[kwarendorf]

Hi CC - Welcome to our little group.

As everyone's MS is unique, so to is there approach to dealing with it. It sounds to me that your neurologist wanted to make sure you first episode wasn't Clinically Isolated Syndrome, CIS. CIS can be exactly like MS, except that it goes away and never comes back. If it does return, as it did in your case, it can be relabeled MS.

As to hitting an ant with a sledgehammer, my first and only DMD has been Tysabri. My neuro told me before I started that Tysabri was the most potent treatment available. He reiterated that point yesterday. There are pluses and minuses to all MS meds. For me a big Tysabri plus is that I only have to deal with it once every 4 weeks. The thought of daily or weekly self injections was not all that appealing to me.

Right before I saw my neuro yesterday I saw my naturopathic doc. Her office is two doors down from his, in the  same MS practice. They work together and each is aware of what is being discussed with the other. My naturopathic doc is very clear that the work I do with her supports the treatment I'm getting from my neuro. It does not replace it. My opinion; I would not want to try and deal with MS without traditional medical treatment.

The bad news is you have MS. The good news is you have MS! At least you know what you're fighting, however you choose to fight :-)

Kyle

[immisceo]

I'd have a candid conversation with my neurologist about his approach. If I still had questions after discussing things with him, I'd go for a second opinion - not necessarily to debate my diagnosis, but to come up with a treatment plan I was comfortable with.

As for the naturopath, they have a fast and loose relationship with science and facts. I'd swiftly pass go and collect the $200 I'd save by not going to them.

[caringcanuck]

Thanks Corrie!  I'm told Tysabri is often not covered by drug plans (both private and provincial) unless you've been on one of the DMD's prior and that is why it is not usually given as an initial drug.   I guess I'm lucky in that my husband's plan allows me to go straight to Tysabri or Gilenya without having to try one of the other DMD's.  

My neuro definitely says it's my choice for sure but he says Tysabri has the greatest efficacy rate and therefore "more bang for your buck" so to speak.

I'd love to hear from anyone out there that was put on Tysabri from the start (or from anyone who has an opinion on it;-).

Thanks so much!

[Corriel]

Hi there and welcome to the forum! I agree that this does sound like overkill.  I am newly diagnosed in Canada too and my neuro only recommended Avonex, Copaxone, Betaseron, Rebif (Tecfidera was not yet available at the time of my RRMS dx). I chose Rebif.

Based on the information on the MS Society of Canada's website, Tysabri is usually presribed when other DMD's are not tolerated or don't work for an individual.

I know that there are several here on the forum who are on Tysabri and maybe they could shed some light, but I am confused as to why your neuro would jump on that one first.

My neuro had no preference for a DMD and wanted me to make an informed decision based on my lifestyle and the ease of maintaining treatment.  

I'm sorry I can't offer anything on Tysabri, but best of luck on deciding on a therapy, I understand where the naturopath is coming from but everyone is different when making this particular decision for their MS.  I wanted anything I could use to fight and I don't want to rely solely on medicine or natural/alternative medicines.

Take care,
Corrie