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

[SharleneMA]

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

[mary2010]

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

[mary2010]

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

[daisy.girl]

I messaged you with a few web links. Let me know what you think!

[twopack]

Excuse me Mary, I failed to read your original question carefully.  I notice now that you were seeking advise on how to convince your neuro to use a treatment you have already decided is best.  I have no suggestions regarding that.

As far as Wikipedia goes, I believe there are better authorities available.  If you really prefer it for research, take a look at what it says about LDN and chelation therapy.

I am glad to hear you are feeling well and returning to work.  I hope your treatment choice works well for you.

Mary

[mary2010]

I don't want to have to go to another neuro because my insurance won't cover that. If I go to any other doctor everything will come out of my pocket for consultation and for the LDN. I was trying to avoid that.

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 went to the other websites quoted on Wikipedia, the Cochrane Medical Review and Copaxones website as well to confirm what was quoted. If you want the links I can email them to you.

Mary