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What can I do to get my neurologist to try a less dangerous treatment?
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by mary2010, Mar 20, 2010
I am happy to say I am in full remission from my recent exacerbation, after having chelation therapy and will be back to work next week.  

My new neurologist who is now the third to diagnose me with MS, now wants to put me on Avonex to prevent relapses but I wanted to try a treatment called low dose naltrexone, but he refused. Avonex is very scary to me and I don't understand why he wont try this, since a lot of other MS patients have had incredible improvement from it, some who I know personally. Its a pill and not injected and is used in low doses so it doesnt have a lot of dangerous side effects like the CRAB drugs do.

According to Avonex pamphlet the doctor gave me :Avonex can cause serious liver damage, change in thyroid function, seizures,depression, heart problems, a drop in red or white blood cell levels.

The side effects are fever, chills, sweating etc. Not to mention injections are intramuscular which can be painful and frequent monitoring of your liver is necessary because the doctors know it can damage your liver.

How did this drug become approved by the FDA? It seems like my quality of life will go in the toilet if I go on this.

Does anyone have any suggestions as to how to approach a doctor who is rigidly set in deciding my treatment? He never even gave me an option as to which CRAB drug he would prescribe, trying to push Avonex off on me, never even told him I wanted a crab drug.

I am the patient, its my body and I should have the option to choose my treatment. The IV steroids given to me in the past caused fatty liver disease, which has been reversed, but I don't want to damage my liver again with any more harsh drugs.

My insurance company doesn't allow me to go to any neuro of my choice so I am stuck with this doctor and I want to be diplomatic but I don't know what to do to convince him to let me try LDN.

Any suggestions?


Mary
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Member Comments (25)
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by essdipity, Mar 20, 2010
First I want to say that Avonex is not dangerous. Every med out there has side effects, and you should know what they are, I agree. That does not mean that every patient will get them, or even one of them. It is required that any significant effects (more than placebo) be reported, but if you read these charts, you will find that relatively speaking, the incidence of effects is low.

Second, it is necessary to weigh the potential benefits against the negatives. For all of the CRAB drugs, the positives outweigh the negatives, in my opinion. Would you rather get manageable flu symptoms or be confined to a wheelchair? I know that's a pretty harsh assessment, but for some people, that's the reality.

Third, although liver function can be affected by the interferon class of DMDs (for a small minority) this can easily be monitored through blood tests. Very few patients have to be taken off the drug because of this, so that's not a reason not to give it a try. If necessary, the med can be stopped, and the patient can be switched to Copaxone. This is a rare occurence.

Fourth, LDN has not be shown to work against MS. It often makes people with various diseases feel better and have a better quality of life, which is a good thing, but it does not slow MS disease progression. The DMDs do. Your doctor is correct in not agreeing to this option.

Doctors have spent many years learning about all these factors. There is no reason to automatically assume a position of distrust. This is not to say that some docs aren't stinkers, because as we all know, there are plenty of those out there. But I urge you to rely on your doctor unless or until there is reason not to.

ess
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by Quixotic1Blank, Mar 20, 2010
I have to echo ess. Avonex is no more dangerous than Tylenol.  Both can cause liver problems, though Tylenol is far more associated with severe liver damage than any of the Interferons.  A very small minority on Avonex might see a modest drop in white cells.  In a tiny number the drop is enough to stop the drug.  Again, I regard Tylenol as far more dangerous - as a physician.

I'm puzzled when I see people focusing on the side effects of the drug, but ignoring the side effects of the disease.  If you ask yourself

What is the worst thing that could happen to me if I take Avonex? - the answer is there is a very low risk of seeing an elevation of liver enzymes (which would not have symptoms associated with it and that they would find as they monitored your blood test every 3 to 6 months)  Or a minor risk of dropping blood counts.  Both of these are reversable if the med is withdrawn.  I also might have achey muscles, a headache and such for a day or so after the shot.  These would likely get less and less as time wore on.

What is the worst thing if I don't take a treatment that is proven to help MS at least in a percentage?  My disease might march steadily on, and faster than on a med, and I could end up quite permanently crippled earlier in life.  The chance of the disease advancing is about 80%.  The chance of more severe but treatable side effects of Avonex are a few percent.  Seems like a no brainer.

LDN is highly touted by those that claim it has helped.  In the three real studies that have looked at LDN objectively it is not at all clear that LDN can improve MS at all.  In one test there was not even any clear evidence that it even improved the Quality of Life while letting the disease march on.   To my knowledge these are still the only truly evidence-based studies that have been concluded.   Here are summaries of those studies:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Low-Dose-Naltrexone-LDN---Three-Studies/show/1096?cid=36

If we are to believe what people "say" about what has helped them - Testimonial data - we would have to believe that you can cure MS with:

LDN
Antibiotics
Marshall Protocol
Diet - several different ones
Chocolate
Algae supplements
Detoxification
Magneto-electrical devices

All of these have wonderful testimonials form hordes of people claiming their disease was improved.  If all these people say they work, then they must work and why look farther?  The truth is, the therapies don't work.  Most of the people who have been improved merely went into remission, had a benign course anyway, or had a strong placebo effect.

A physician has every right to refuse to participate in the care of a patient who wishes to go a route of treatment with which they disagree.  It is a quite ethical stance.

There are neurologists around who do participate in using LDN, and you can find them through the LDN sites.

We have had about a dozen people here use LDN.  About a third have felt better, but seen their disease continue to progress.  About a third felt worse and stopped it.  And the rest were unsure whether or not it helped.  That's really not any better information  than the testimonial evidence on the internet, but it does show that some people actually do feel worse on LDN.

As for whether a med should have been approved, there is a very strong activist part of the MS community that has demanded that the therapies that have been shown to have the real, provable capability of helping change the disease course be released so that they could have access to them on an informed basis.  Tysabri is a major example.  It was withdrawn from the market when it appeared that about 1 in 1000 could suffer a fatal brain infection.  However, beings that it is given to people whose disease is taking them downhill fast, that 1 in 1000 risk had to be compared to the 100% risk of suffering further neurologic harm from their disease.  I see this as a no-brainer.  So did the rest of the MS world and it was returned to the market by demand of the people and docs in the field.  Tysabri can really turn bad MS around.

If you want to marvel at why things are approved, take a look at aspirin and even acetaminophen and you will wonder how they were EVER allowed to be used over the counter.  The side effects look just as bad as Avonex.

Many people focus only on the affects of the meds and not on the effects of the disease and refuse a DMD.  That is absolutely their right and it is your right.  But your doctor also has the right to refuse to prescribe any treatment he does not have confidence in and to ask you to find another doc if you insist.

If you insist that this is the route you want to go, my best advice would be to go the LDN Communities and find a doctor who prescribes it.  You should let your neuro know this.  And I hope that they know what they are doing.  One naturopath treated one of our members, Grannyhotwheels, but didn't bother to check her current meds which included heavy doses of narcotics.  The first dose of LDN threw her into such severe pain that she wound up in the ICU and subsequently had a stroke from the elevated blood pressure.  That should never have happened, but it did.  Even I knew that LDN couldn't be taken concurrently with a narcotic.

I wish you good luck, but don't know how you can convince a doc to treat you with something he has no faith in.  

Quix

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by Lulu54Blank, Mar 20, 2010
Mary,
There's nothing else to add to Ess and Q's reply, other than dealing with this disease is always going to be a cr ap shoot - I choose to roll the dice with the greatest odds that I've been given, and participate in my treatment with a DMD.

Please make an informed - it is your future you are deciding.

be well,
Lulu
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by daisy.girl, Mar 20, 2010
hi mary...
I am on LDN and feel strongly about using it over a CRAB too.

Here is a link of over 200 MS patients on LDN and their results over time.
http://ldndatabase.dabbledb.com/page/cancer-researchcopy/ddXxiaHj#

I have read numerous cases where LDN has modified the disease process using LDN.
Many have not had a relaspe in 6 years or more and have shown decrease in the amount of lesions and no further lesions on MRI......

Many of the CRABS  continue to have increase in the disease, increase in lesions seen on MRI. At best the CRABs show around a 29% of slowing down relaspes. Not to mention the need for blood work to monitor liver function on some of them.

If you cannot get your general practitioner or other doctors to prescribe LDN contact Crystal at the email below, she may know of a LDN doc in your area or one willing to do a phone consultation.

email: ***@****

Hope this helps....everyones decision is personal, and I believe each of us need to make an educated and informed choice of what is best for us individually.
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by twopack, Mar 20, 2010
Hi Mary,

Before being diagnosed, I spouted off frequently that the diagnosis wouldn't make much difference to me because I was already pretty successful in treating my symptoms and didn't think the DMD side effects were worth tolerating.

Once the diagnosis was established my neuro gave me some time to think about it.  About that same time, Lulu told a story about a wall, an electrical wire, and a gun.  The moral of the story was that there's no way to predict which "bullet" whizzing around in your CNS is going to find a vital target.  And you can't know when - no matter how lucky you're feeling at the moment.  It got my attention.

To seal things up, within 24 hours I read about a woman (much like me) who had done pretty well for 20 years and then 'out of the blue' developed a speedy downhill disease course.  I decided I couldn't say DMDs didn't work for me if I never tried any.  I could always discontinue treatment later if my own experience showed they weren't a good fit for me.

It is a hard thing to contemplate injecting yourself with a substance that can cause you to feel bad on good days and worse on bad days.  If you end up feeling good, how will you know it's the drug working or just your good fortune to be in a long natural remission?  You won't for sure.  But if you choose not to start a DMD, when the next relapse comes (and it will come) how will you know if it could have been prevented?  You won't.  But you will have lost precious time and opportunity to delay MS's attack on your CNS.  Hopefully, you would again be able to return to full function and remission.

I became eager to start fighting MS with Copaxone.  Yet when the day came - I had trouble getting the injection done.  I wasn't afraid of the needle.  I had injected myself before.  I was terrified of the sting, itch, pain, lumps, burn, and weeks of reaction at each site I would create daily.  I had heard it all here - and on other online places.  Finally, I did it and.....

nearly nothing!  I do get a minor version of the anticipated reactions but NO ITCH.  Oddly, that is what I dreaded most.  Maybe I'm just fortunate.  Still, I wanted to mention that for at least one person, using a DMD has not been a huge life adjustment.  (And, oh yeah, I'm very grateful because I've got enough other complications going on right now.)

I think that our perceptions and expectations can get skewed here.  We are a GREAT support for one another but the nature of the forum is to highlight questions (and therefore very often) problems, complications, fears, etc.  We put MS under a microscope here to understand it and try to make sense of something that makes no sense.  Things can look bigger than they are.  When things are going well we can forget to mention that.  So just in case anyone missed it in this long ramble........

I'M VERY PLEASED WITH COPAXONE AND HAVE FOUND THE ADJUSTMENT TO DAILY SELF INJECTIONS HAS BEEN FAR EASIER THAN I ANTICIPATED.  IT IS INDEED POSSIBLE TO TAKE A DMD AND NOT EXPERIENCE THE MANY POSSIBLE REACTIONS.

I hope your neuro will agree to explain why he thinks Avonex is best for you.  I also hope you can re-establish a relationship that allows you to work together against MS instead of each other.

That's a pocket's worth of change (about 2 cents) on this from another
Mary
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by Deb61, Mar 20, 2010
There's also the option of Copaxone that you may want to talk to your doctor about.  It has fewer side effects than Avonex.  I've been on this drug for two years and I'm glad I chose it.  

Before I started my medicine I made the comment to my neurologist--something to the effect of that I would wait to ensure that he had a correct diagnosis, especially because the side effects of the MS medicines were so potent.  His comment to me was that the side effects are so minimal in comparison to what the disease of MS does.  He said that if you have MS, you should be on a DMD.  He has reiterated this when I go in for visits.  For me, he says the Copaxone has helped to halt the disease activity and allowed my brain the opportunity to even begin healing.  I know from good hard evidence that I went from nearly wheelchair bound to walking without too much difficulty.  I saw evidence in my brain MRI--lesions even disappearing.  Lesions not getting bigger and multiplying.  

I know how scary it is before starting a DMD.  I went through the same thing.  Doubt creeps in--probably as the result of being in the acceptance phase somewhere.  We're with you, sweetie.  I am certain that all of us that are on DMDs have gone through this process.  It's not too thrilling to think about having to give yourself shots and to think about the possible side effects that the drug may cause.  However, I now tell myself when I give myself shots, that I'm fighting off this disease and it helps me.

Just remember that we'll be with you, girl, no matter what you decide to do.  

Deb

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by SharleneMA, Mar 21, 2010
Boy, am I glad I read this thread.  While I'm not on any of the mentioned drugs, I am on Cellcept for my PPMS and have been for about 8 weeks.  Recently I've been feeling more uncomfortable with the side effects of Cellcept, particularly the increased risk of skin cancer and lymphom.  I still plan to discuss this with my neuro but I am not as anxious as I was before reading this thread.  

Thanks, all.  

Sharlene
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by mary2010, Mar 21, 2010
Thanks for your very informative post. I really appreciate the info you provided.

I used to work in a pharmacy and I am no dummy when it comes to serious side effects.

I am going to try to find a doctor who will prescribe LDN, its worth a shot.


Mary
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by mary2010, Mar 21, 2010
Yeah its very scary having to deal with giving myself a shot and the possible serious as well as uncomfortable side effects to contend with as well. I used to work in a pharmacy and I am very aware of drug reactions and side effects. I am a critical thinker and do not take what "people" or every "doctor" tells me at face value, I research and analyze information and then make an informed decision.

Its also difficult for me to buy into the CRAB drugs because I have been going to MS support groups in various cities throughout the years and the people who are using these drugs are in wheelchairs or continually progressing and I have not personally met a person at any of the groups that could tell me they were any better from using the CRAB drugs.  I have read hundreds of drug reviews on various websites by unbiased individuals(not influenced by any medical establishment) and I have done research on Copaxone and found the following info about Copaxone on Wikipedia: (in quotations)

"However, a 2004 Cochrane Medical review[8] pointed out that "Glatiramer acetate did not show any beneficial effect on the main outcome measures in MS, i.e. disease progression, and it does not substantially affect the risk of clinical relapses."

In its pivotal trial [9] of 251 patients, after 2 years Copaxone failed to show any advantage in halting disability progression (78% of treated patients were Progression-free versus 75% Progression-free on placebo).

As a result[10], the FDA marketing label for Copaxone does not have an indication for reducing the progression of disability."

I looked at Copaxones official website and at the very bottom of the page it says that Copaxone does NOT have an indication for reducing the progression of disability.

I don't understand why a doctor would tell a patient that it reduces the progression, if the makers of Copaxone THEMSELVES admit that it does NOT have an indication for reducing the progression of disability.

I think the billion dollar drug companies are eager to make a buck, as these drugs cost a fortune while they are lining their pockets with the misfortune of others it appears.  


Mary