What can I do to get my neurologist to try a less dangerous treatment?

[mary2010]

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

[essdipity]

Yes, it is important to correct erroneous information so that other members are not confused or put off. MS is confusing enough without this sort of thing.

ess

[Quixotic1]

Mary, you are mistaken about Copaxone not having shown a reduction or stabilitization of disability.  Just because the FDA has no yet given the indication, does NOT mean the evidence is not there.

A 15- year study of Copaxone which recently concluded shows that this med DOES slow disability.  It was reported in the CMSC (Consortium fo MS Clinics) one of the most esteemed and impartial scientific MS groups around with the last few months.  Here you can read the report:

http://www.mscare.org/cmsc/Informs-Copaxone-Demonstrates-Robust-Long-Term-Efficacy-and-Safety.html

As for the 7 year old Cochrane report - it is, as I said before - totally out of date.  Wikipedia is a sorry excuse for "evidence."  And the makers of Copaxone can't claim an "indication" for delay of disability until one is granted by the FDA.  That lack does NOT show anything except that the bureaucrats haven't moved on the evidence yet.

So, Mary, I doubt that any of this will change your mind, but realize that we do not buy into testimonials, old or incomplete data, or assumptions or blanket statements about conspiracy here on the forum.  Other places may.

We keep answering on this thread NOT to influence you.  I believe your mind is permanently made up, but to help people who do not understand what all is being said about LDN or any one of the dozens of other treatments that are "touted" as cures or effective treatments for MS.  Those are the ones we try to help.

Again, the people on the LDN forums will gladly agree with you and help you toward a doctor who will prescribe this med.

Quix

[jensequitur]

The support for LDN is anecdotal at best.  From the study at the University of California, they have found that LDN has very little effect on physical functioning.  It does seem to help the mental health of the study participants, but since the data was self-reported, it's hard to say how objective it is.  As Quix says, it's very difficult to separate the placebo effect from the actual effect.

All the people taking LDN in this study were on one of the DMDs.

http  ://ms.about.com/b/2010/03/02/ldn-study-results-published.htm

Copaxone has been shown to have no effect on disability.  However, it does help reduce the rate of atrophy, and also reduces relapses.  This was one of the reasons why I chose Copaxone over the others available.

http  ://www.drugs.com/clinical_trials/copaxone-significantly-reduced-brain-atrophy-tissue-loss-over-five-years-naive-relapsing-remitting-4019.html

Since we don't know yet how the disease process works, it would be a mistake (imo) to discount one of the DMDs in favor of a off-label application of a drug that doesn't 1) reduce relapse rate 2) reduce atrophy 3) reduce disease progression.

You'd be better off doing something that won't cost you anything, like one of the crazy diets out there.

Just my 2¢.

[ashleyPT]

"I guess there is basically nothing I can do then, because its hard to get a doctor to prescribe a drug thats SO cheap, after all, its like 30 dollars a month. Oh thats right, the doctor needs to pay off his 300k student loan and its faster if he prescribes a drug that costs two thousand instead. I think thats the reason he isnt going for the cheaper drug. I can't tell him that though it would not be too diplomatic however true it may be."

I find this comment shocking.  This sort of practice is illegal.  Most doctors I see and work with are extremely respectful of the cost of drugs and are willing to find appropriate alternative options when price becomes an issue.  Doctors have a lot on the line every day that they practice. They have to be able to support, defend, and stand behind their decisions 100% for insurance purposes and lawsuits.  I'm sorry you can't come to an agreement on the best treatment for you, but this doesn't automatically make the doctor a horrible person.

[Quixotic1]

It's pretty clear that you do not respect doctors (MDs) and believe that they all operate out of avariciousness.  With that view, I wouldn't accept anything from them either.  I have to wonder, tho, about the doctors whose patients with heart disease are only on aspirin (probably cheaper than water) and digoxin (an old med with a minimal cost.)  They are missing a huge opportunity to nail their patients for big bucks, assuming you believe that all doctors take kick-backs from the pharmaceutical companies.

I'm sure there is no chance that a physician would ever be caught be following his or her own conscience.  What a ridiculous thought!

The LDN communities can easily point you toward doctors that prescribe LDN - some after only a phone call.  People here who have taken LDN can tell you how they recieved their prescription.  It is clearly not impossible since there are all these people using it who claim it is the eighth wonder of the world.  They got it from someone.

Quix, MD

[Ufrustrated2]

>>... 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.

i finally was given copaxone and so far i don't mind at all and i have no clue if it is helping but,

days and weeks for me, over the years have been a "cr@p" shoot as to how i will feel physically and mentally. i went way too many years blaming myself for those "episodes/relapses/whatever" not knowing what was wrong though knowing something was.

this roller coaster ride has taken its toll but as Doc Q has told me, i'm still very fortunate after all these years to be on this roller coaster versus the whell chari or bed.

most nights i have gone to bed wondering if the next day will bring relief or another exasteration and how long will the exasperation last this time? a day, a week, months?

or, and this is the main reson i fought so hard for the medicine(s)/treatment, what if the relapse doesn't go awy this time?

i'm quite good at perseverance, but terrible at gambling, so i don't gamble per se.