New, DX, very confused about first time treatment options

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New, DX, very confused about first time treatment options

Postby 4LFC » Fri Aug 09, 2013 7:29 pm

8O

Hello, very happy to be a part of this wonderful community. I finally registered after weeks of doing research on here. I am desperate for tips and advice, and specific questions I should be asking my neurologist.

I was diagnosed 1 week ago, but haven't been extremely satisfied with the answers i'm getting, even though my neurologist's office is supposedly one of the best in Ohio.

Any tips or advice would be greatly appreciated. Thank you so much.

I am confused right now. I am confused why they want to start me on Tysabri and not one of the other treatments available like Copaxone or Avonex. I haven't been satisfied with the response at the neurologist's office, but with lack of funds i'm unable to seek a second/third/fourth opinion. I am so desperate to get back to work, which is why i'm almost ready to just say yes to Tysabri without even knowing what could happen to me in the future as there is no data available(?).

I saw a neurologist Dr. at Dayton Center for Neurological Disorders by Southview Hospital 1 time, he sent me for my testing and the next phone call was from the infusion nurse at the office telling me there were lesions on my spine/neck and brain and that they wanted me to come in for a 3 day steroid treatment. I asked if it was MS and she said, "The Certified Phy. Assistant will talk to you more tomorrow but it's looking very possible. I can't say anymore".
When I went in for my first steroid infusion the infusion nurse (not the doctor or assistant) handed me a Tysabri pamphlet and told me they wanted to get me started with that right away. She then asked me if i'd be able to inject myself, I said "probably not, is there a simpler option?" She said, "yes, with Tysabri you'll come in once/month for injections."

After my first infusion I saw the Certified Phy. Assistant. She was the first person to tell me that I do in fact have MS. She was so quick with everything though... it was like, "you have MS, I want to start you on Tysabri, you'll be back to work in a couple weeks and with this drug won't have another relapse for awhile or at least that's the plan, sign this TOUCH paperwork, bye bye, see the infusion nurse tomorrow for your next steroid injection and come see me the end of September".

She never mentioned another drug/option but now that my fiance and I have done our own extensive research, we're seeing that Tysabri is a secondary treatment(?) for those who fail with other treatments such as other injections or oral drugs. It even says in this long information/warning pamphlet I received in my TOUCH program "welcome" package that it's "ordinarily prescribed to people as a secondary treatment". It also says in the pamphlet from TOUCH, in so many words, that it's not safe to take past the 3 year mark. So, why not start me on a less risky drug that won't cause permanent liver/immune system damage and switch over to Tysabri if the other treatments don't do anything? I know it's a great drug and will probably stop all my symptoms, but surely I can start out with something less risky.......

I am JVC virus negative.

I asked this question to the infusion nurse who first gave me the Tysabri pamphlet and she said they suggest Tysabri to stop all the symptoms and to prevent any other damage, mainly because I have lesions on my spine/neck. She never told me what type of MS I have either.

With everything you've heard, would it be wise to get a second opinion? Would you recommend that people newly diagnosed start on something less risky?

I am scared to jump into a drug like Tysabri. I'm reading that in the 100,000(?) people who have taken this drug since it was re-introduced, there is no data available showing what happens, if anything, once you're on it past the 4 year mark. Will it cause liver failure in my future, will it weaken my immune system beyond repair? This all makes me nervous and after all this reading, giving a shot to myself once a week sounds easy-peasy! Haha! I don't know! I am confused and scared.

I asked what would happen if I started on Tysabri and then wanted to switch to something else, she said it wouldn't be a problem at all..... so why not try something less risky first? Does this make sense? :/

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Re: New, DX, very confused about first time treatment option

Postby NHE » Sat Aug 10, 2013 12:48 am

Welcome to ThisIsMS. I believe that you are correct to be concerned about Tysabri. While you may be JCV negative now, the JC virus is rather prevalent in the general population (about 85% are carriers if I remember correctly) and you may not stay JCV negative. Furthermore, you are correct in your interpretation of the literature that Tysabri is not typically used as a first choice in medication. The risk of PML is very real. While it is true that only a small percentage of Tysabri users have been diagnosed with PML, 87% of those who survive become moderately to severely disabled from it with 42% of that group requiring custodial care. tysabri-antegren-or-natalizumab-f11/topic18045-15.html#p183025 Moreover, the risk of PML increases with the duration of exposure to Tysabri.

I understand the feelings of urgency that you might have, i.e., just diagnosed and dealing with new symptoms. However, I'm not certain that there's a need to rush and jump onto a treatment protocol, DMD, without first doing thorough research. In addition to reading the patient information sheets for the various medications, you should also be reading the doctor's prescribing information pamphlets. These present a summary of the studies that led to FDA approval for a particular drug and include the incidence of the various side effects associated with that medication. Give the IV steroids a chance to work. They'll likely greatly reduce your symptoms. Once you're on more level ground, then make a decision about a possible DMD.

If newly diagnosed, the first thing I would do would be to get my diet, supplements and daily life in order first. Eliminate foods which are proinflammatory such as trans fat. Reduce long chain saturated fatty acids which are also proinflammatory. Refined sugar also has to go (diet-f9/topic19622.html). Start a diet enriched in fruits and veggies. Dr. Daniel Amen recommends that 75% of caloric intake be from fruit and vegetables. Secondly, find out what your current nutrient status is and supplement accordingly. For example, among other parameters, be sure to get your vitamin D3 levels tested. Don't accept being told that you're "normal." Normal just means that you fall into a large category which includes a lot of other people, some of which are also sick. Get a copy of the actual lab report. An optimal vitamin D3 level is about 150 nmol/L (60 ng/mL). If it's low, then take appropriate supplements to bump it up.

Here's something about vitamin D3 your neurologist probably won't tell you...

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%. http://www.ncbi.nlm.nih.gov/pubmed/22783368

Thus, a mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in a higher efficacy range than half of the drugs used for MS with a 41% reduction in relapses.

Be careful though. Vitamin D3 intake needs to be balanced with supporting minerals such as magnesium and zinc. For magnesium, try 400 mg/day of an absorbable form such as magnesium citrate or magnesium glycinate. With magnesium, take half with your vitamin D3 and half at some other time.

Exercise is also important. If you don't have one already, start a regular exercise regimen and stick to it. The more fun you have with the activity, the better you'll be able to keep at it. Exercise can be as simple or as complex as you want it to be. For example, you could go for vigorous walks every day, ride a bicycle, play a sport or work out in a gym. The important thing is to keep at it. MS is like a vicious cycle, i.e., it makes it hard to do things, therefore you do less, as a result, it's even harder to do things. Eventually, after getting caught up in this pattern for a while, it's like getting washed out to sea by a strong rip tide.

Lastly, everyone's experience with MS is a little different. Here's a summary of mine... avonex-f5/topic16456.html#p163704

Again, welcome to ThisIsMS.

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Re: New, DX, very confused about first time treatment option

Postby NHE » Sat Aug 10, 2013 12:58 am

Here are a couple of links to some interesting information on diet.

Dr. Fuhrman's phytochemical nutrient density line. Eat more foods from higher on the list.
diet-f9/topic17276-90.html#p174562

Fat, Sick and Nearly Dead
diet-f9/topic20493.html#p195787
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Re: New, DX, very confused about first time treatment option

Postby 4LFC » Sat Aug 10, 2013 10:49 am

Thank you for all of the information. I should've also listed my symptoms, which are pretty severe in my eyes, especially seeing as how I can't work and bring in an income. My main issue is the balance, which is due to the lesions on my spine. My neurologist wants to get me on something that's going to quiet these issues, which will be done with Tysabri i'm told. I can barely walk, i've fallen in my house a couple times as i'm trying to turn around or step over something, I completely lose my balance. It's a constant 24/7 struggle. I started to feed a lilttle better yesterday until I started cooking and moving around more, I quickly ran out of energy and it stayed like that the rest of the night. I also have double vision.
These symptoms have been going on since March of this year. It all started March of 2012 but everything went away through the winter of 2012 so my family doctor ruled out MS and said it was most likely allergies. Now they've come back with a vengeance.

My doctor said no exercise due to my severe lack of balance. The thought of riding a bike right now or walking down the street give me the chills, noway I could do something like that. The most I could do would be sit on the floor and stretch, which my fiance is begging me to do and I haven't yet. But you're right, the longer I wait the harder it will be.

A friend of mine is telling me to go "holistic" and stay away from these risky drugs, but then I have my neurologist telling me that with these lesions on my spine, if I don't do something I could be wheelchair bound a lot sooner than I think.

The worst part about all of this is the money. I can't work so I don't have the funds to seek a second opinion unless I can find a good doctor, or hopefully an MS specialist, who will see me for next to nothing.
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Re: New, DX, very confused about first time treatment option

Postby CaliReader » Sat Aug 10, 2013 11:48 am

Hi 4LFC,

Here are some thoughts in response to your post. I hope at least some of it is helpful.

Re Tysabri, here are a couple links to some information summaries about PML risk. You may have found these already, but
I'm posting on the chance you have not.

http://multiple-sclerosis-research.blog ... nuary.html

http://multiple-sclerosis-research.blog ... -2013.html

I am no medical provider. But your symptoms have gone away in the past, so there is a reasonable chance that
with the steroids they will go away fairly quickly. I hope you have Relapsing Remitting MS and you recover well from this attack.

I also have lesions on my brain and spine. I am on Gilenya, one of the riskier drugs, that neurologists say is more effective than the injectables. There have only been two reported cases of PML with Gilenya, compared to nearly 300 for Tysabri.
Another issue you should think about when making plans about Tysabri is 'rebound effect'. I also have to worry about this
with Gilenya.

Getting used to the idea you have a serious illness takes time. If you are like most people, shock and fear will change the way you think and make decisions for about a year. I would encourage you to hang in there and try to find whatever people or things that make you happier. You will adapt, but it takes time.

About choice of drugs. The neurologist works for you. It is your disease, your health and your choice what treatment to take.
You don't need a second opinion to say you'd really rather take a different drug.
I found this short article helpful. The author has ms.
http://www.kevinmd.com/blog/2013/08/6-t ... ffice.html

Good luck. You're not alone.
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Re: New, DX, very confused about first time treatment option

Postby DrGeoff » Tue Aug 13, 2013 2:18 pm

I think that at the very least, you are entitled to a clear explanation of why they want to start you on a second-line drug.
As for DMDs in general, the earlier you start, the earlier the medication works to reduce the rate of relapses - and that is all they do. personally, I believe that if I had started on Copaxone when I was first offered a DMD, then I would have had several fewer relapses, and probably not need two sticks to walk. The same decision doed not, of course, have to apply to you.
The only thing that steroids will do, is to bring down inflammation and thus reduce the impact of a single relapse. They will not affect what the relapse has caused.

The summary is that steroids will get you over a hump; a DMD will, on average, reduce the nomber of humps.

There are several forms of exercise that you can do without any effect from your balance. Apart from upper body exercises on a weight machine (you are seated, so no problem there), modern treadmills have a bar to hold on to, and arms down the sides, and a slow walk should be no problem, then there are several static exercises that any neuro-trained physiotherapist should be able to show you. So, don't give up on exercise.
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Re: New, DX, very confused about first time treatment option

Postby want2bike » Tue Aug 13, 2013 4:42 pm

Nutrition is the only real way to treat MS. Dr. Bergman can explain it. The drug companies pay the Doctors to prescribe the drugs. The drug company who pays the most gets their drug prescribed. The drugs may help in the short term but in the long term they will destroy your liver. It is not a good thing to destroy your immune system just for temporary relief. Study the information and make it your decision. Don't let the doctors scare you. They are telling you a lie when they tell you drugs are the only way. Evidence show the drugs do not work.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.nytimes.com/2012/07/18/healt ... html?_r=3&

http://www.greenliveforever.com/healthy ... tion-claim
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Re: New, DX, very confused about first time treatment option

Postby DrGeoff » Thu Aug 15, 2013 2:21 pm

You can get some very clear information on DMDs from www.msdecisions.org.uk
Just do not let anyone put you off taking a DMD by scare stories about what drugs will do to your liver.
I had my bloods results come back yesterday - all perfectly OK for all the liver function tests, as well as everything else. And that is after 2 years on Copaxone, 4 years on Gabapentin, and 15 years on a cocktail of medication for my heart.
There are some second-line DMDs that I would think long and hard about, but that is a trade-off involving quality of life versus life expectancy - and that will be different for everyone of us. This is a case where one size really does not fit all.
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Re: New, DX, very confused about first time treatment option

Postby aredmosquito » Thu Aug 15, 2013 5:08 pm

I am on Rebif, one of the interferons, and have had a smooth ride with it so far.

When I was in the hospital for a week, at the time I was diagnosed, the attending neurologist told me to take as much time as I needed researching all possible treatment options. I did so much reading I thought my eyes would fall out! I ended up deciding on Rebif. Rebif is one that they definitely check liver function with, and mine has been stellar in all of my labs. I would for sure ask why they want to start off with Tysabri.

Remember, when doing any research, that people are less likely to share an experience with ANYTHING unless it is a negative one.
Symptoms as far back as 2007
Diagnosed with RRMS March 2013
Started Rebif May 2013
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Re: New, DX, very confused about first time treatment option

Postby want2bike » Mon Aug 19, 2013 4:44 pm

Many will tell you the drugs are good because their doctors and the drug companies have convince them. The facts are doctors with their drugs were the third leading cause of death in my country reported in JAMA in July 2000. Dead people do not talk. Drugs may help you feel better in the short term but drugs are toxic to your body. They will destroy your immune system and your liver. Long ago it was said "Let your food be your medicine and your medicine be your food". Nothing has changed. You put the good things in your body you get better. Forget the drug peddlers and do something which will make a difference. Better to give diet a try before you poison yourself with the drugs.

http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.greenliveforever.com/healthy ... tion-claim

http://www.naturalnews.com/001298.html

http://www.nytimes.com/2012/07/18/healt ... .html?_r=2

http://articles.mercola.com/sites/artic ... L_artNew_2
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