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.
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.
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:
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:
Diet - several different ones
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.
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.
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.
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.
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.
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
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.
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.
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 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  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, 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.
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.
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.
Hi Mary. I'm not on any of the DMD's at the moment but I have been in the past. The cost is prohibitive.
I truly believe that all neurologists prescribe the DMD's with the best interest of their patients in mind. Absolutely-without a doubt. The DMD's don't cure MS but they are proven to slow MS progression in most patients. Whether we want to believe that or not is another story. You can be fairly certain your neuro suggested Avonex for you based on his experience.
I can understand your frustration. You may be hard pressed to find a doctor to prescribe LDN as a treatment for MS. Symptomatic relief yes, but not as a substitute for one of the CRABs. Neurologists have seen up close the damage MS can do. Right or wrong, they believe the DMD's are the best choice and often will not entertain anything less.
>>... 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.
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.
"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.
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.
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.
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.
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:
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.
A further note about doctors prescribing expensive drugs.
Doctors do not, and are not allowed by Federal Law to, benefit from the meds they choose to prescribe. What they do get is problems from the insurance companies for using more costly drugs when there is a good less expensive one shown to have the same effect. The patients also complain about the high cost of meds and ask to use a lower cost one.
Do drug reps lobby for their drugs?? Absolutely. However, the majority of the lobbying takes place with lunches or dinners. In my case, they brought us in pizza for lunch to talk to us about their meds. I guess a good ?? Domino's slice will buy my loyalty.
While I commonly rant about doctors that don't know enough about MS to diagnose or treat it, I would never go after a profession wholesale. That's ridiculous. There is not one profession that is corrupt throughout. I actually believe that the vast majority of doctors and neurologists are smart and honorable. Some maybe more arrogant than others.....
I think it is pretty obvious who Mary was directing that quote to and I find it to be totally disrespectful and if you feel the way you do then why are you even wanting our responses??
You obviously have it all worked out so why don't you just go with your decision and in the meantime, don't knock others for making informed choices about using the DMDs.
And just for the record, Quix is one of the most caring, helpful DRs I know. She has integrity and holds more knowledge about MS than anyone I know.
She obviously cares about others that have MS and wants them to recieve the best care possible to slow the progress of this disease.
You obviously think you are more enlightened on this subject and I am pleased for you . Good luck with your decision on the LDN.
I am fairly new here, so I don't know the dynamics between posters yet....or if there is a history of disagreements.
I thought the purpose of these forums was be there for each other...whether or not we agree on every issue.
I don't understand why someone who just wants her doctor to try a different medication is looked so down on...I did not take what she was saying as doctor bashing. It truely is no different then the many of the posts I have read here where you all do not agree with the Neurologist that states symptoms may be caused from stress and/or depression. I read that someone called their Neurologist an idiot.....and no one called that doctor bashing, in fact, all of you agreed.
In fact, it seemed more like you all came together to bully her. I really don't understand that??
I did check the link to the official copaxone site, and it does say:
"Copaxone does NOT have an indication for reducing the progression of disability"
I don't know if that is out of date info or not....but I would thik that if it were, it would have been removed by now from their website.
Also, I don't think it is fair to put Naltrexone in the same catagory as chocolate, algae, diet, etc.
Naltrexone is a FDA approved drug, that is being used off-label to treat auto-immune diseases. It is a very common practice...and there are thousands of FDA drugs that are used off-label, to successfully treat many diseases and illinesses. All without proven clinical trials for that purpose.
I am in know way trying to cause strife....I think MS gives each of us enough stress and strife ....and we all need support no matter what drug we choose, or whether we chose any at all, and no matter if we are frustrated with our doctor, for whatever reason. I think we have all been there at one time or another.
I want to know that if I post something that you all do not agree with....that I am still going to have support and not be looked down on because I don't agree with the majority.
I just wanted you all to see this from my opinion/perception. Not sure if this is because I am new to MS (just dx in Jan) or not.....but this is how it appears to me.
Rely - you are correct that feelings have run high on this issue. This is an unusual direction for a post to take. Though I feel that there was a wholesail attack on an entire profession, I will let it be.
What appeared to be ganging up was also the pointing out that most of the evidence being put forth was poor evidence and needed to point out that.
The Copaxone statement has been explained. The data that Copaxone IS effective against accrual of disability has been presented along with the prediction that the FDA will follow it with an indication for this.
No one here would argue against a poster's choice of LDN, but we certainly can point out that so-called evidence of it's usefulness is quite faulty. Pointing this out is a service to others looking to get the whole story.
Her question was how to convince her doctor to use a less dangerous treatment. For all those who have chosen and are taking Copaxone, it was quite within our duty to point out two things. A doctor has a right to refuse to prescribe a med in which he no confidence and that Copaxone is NOT dangerous.
Yes, the discussion did get heated and I was partly responsible for this. As a member of the medical profession I did take exception to the blanket statement that physicians choose which drugs to prescribe only to line their own pockets.
So the discussion moved beyond support. I tried in all of my early posts to support her desire to get LDN by suggesting places that she could approach to find it. I did this three times. But, I also feel an obligation to counter her statements that LDN is proven successful, that Copaxone is dangerous, and that physicians make money by prescribing expensive drugs. Other people read this forum for information.
Yes, all posters deserve support, but they also bear a responsibility not to bring untruths to the forum. There is also a difference between ganging up and disagreeing with a person's "facts" and opinions.
I will refrain from further posting here as I have made my points.
Mary, Rely, I am sorry if you feel ganged up on. You have every right to desire to use chelation, LDN and whatever else to treat your disease. I hope you make use of the suggestions I gave you for finding a prescribing provider to give you LDN. As I mentioned before I know it is not hard as we have had several people try this med. I hope they will post or contact you to tell you how they found the provider.
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