Drugs or no drugs? It's more difficult than I thought.

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Drugs or no drugs? It's more difficult than I thought.

Postby luckyme » Mon Oct 17, 2016 4:53 pm

This very question has been ruling my mind as of late. Iv read posts on both. Done a lot of research on the drugs available to me. I'm still on the fence with this one. It seems some of the side effects sound worse than how I'm feeling. And how is a drug approved by the FDA when they can't even say how it works? Some will say they've been on a certain drug for 10 yrs and no lesions or attacks. Others say been this drug and only got worse. Some say been on this special diet for 10 yrs and I'm healthy as can be! Others say don't be a fool to treat with diet. Then I think the nature of this damn disease is so unpredictable that it may be possible to be on a FDA approved drug for ms for yrs with so called great results but how do we know it's actually the drugs that have kept the disease at bay? Could it be that the course of the disease just has decided to lye dormant for all those years? I can't help but to notice so many people on both sides of the fence have had to change medications or diet after a period of time claiming it's not working anymore. So how does a medication that so called works for years just suddenly not work? Or is it just that it never really worked in the first place perhaps the disease went dormant. I know there's studies on all of this but can the studies all be trusted? Can they be wrong? Of course they can. Where are all of these studies coming from? Not to be biased on drugs or the diet. Because you could also say the same for the diets as well. There's studies saying they work too. I think question lingers in my mind simply due to the fact that no one can tell me that here's is the solution. This will help you 100% of the time. On to the drugs.... These are no baby drugs! These are serious drugs! Drugs that beat the shit out of your body. Some warn that they can cause death. For those of you who dont wanna belive that, why is it re commended you have certain test while on the drug? Some will say well I take this and my liver tests are fine. To that I say yeah... For now. Truth is IMO is if it says it may cause liver problems then it's tough on your liver. We are told to take these things by our drs but the risks are great especially the longer you are on them. For me the risks are greater for I am jcv positive which is no joke either. And the side effects, some of which sound worse than the disease. I'm just thinkin if I do not choose a drug will my quality of life be better? Or will I choose a drug and loose time from my life cause of adverse affects? No one knows. I could go blind tomorrow. There's no reason for me to believe that will happen but it could. I guess this is all a game of chance. I don't wanna play this game anymore!!!
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby Kiyaan » Mon Oct 17, 2016 6:20 pm

Hey Luckme,

The issue your describing is faced by most, if not all MS patients. All of the points you made are essentially underpinned by uncertainty; either about how the drug works, whether it will work for you, whether another drug may be a better option or to take a drug at all - more importantly, we don't even know what causes the disease!

There is no getting around this, but this is not novel. Our entire existence, and experience of this existence is uncertain (I don't want to get too philosophical here, and I think the point that there is no absolute truth/100% certainty is self-evident). Most of us handle this uncertainty very well in our day to day lives (e.g. you don't seriously worry about the world ending, or something catastrophic happening), though the possibility is there.

All the work that goes into developing drugs, scrutinizing the pathology of the disease blah blah blah is done by looking at patterns which may be evident in the data that is being collected by the researchers; but, remember, these are just patterns which may have shown up by chance. We have statistical methods to measure the probability of something being due to chance, and that's as close as we can get to certainty. If an observation (e.g Vitamin D3 intake reducing relapse rates) has a .05 percent chance of happening due to chance, then it probably didn't happen by chance alone. Note, this is still uncertain by definition. Not to mention the fact that there are competing theories, and contradictory findings by different researchers and fears about bias and financial motive etc.; but, what does this all mean for you?

I don't think anyone is in a place to tell you what to think, or what to do, precisely because of all the uncertainty. It's all a crapshoot and you should focus on developing routines and practices which work for you (e.g. make you feel better); your doctors would be making educated guesses (but guesses nevertheless) too. This is also why a lot of patients adopt a "shut gun" approach, where they'll try everything they can to try and stave off the progression of the disease. Personally, and unsurprisingly, I advocate for this approach. I changed my lifestyle to be more healthy in general (e.g. diet/exercise), and initially decided to follow a pescatarian, very low saturated diet as suggested by Dr. Roy Swank, and more recently, Dr. George Jelinek. I continued to do research, and I realized that Swank's work doesn't actually explain any of the genetic findings regarding multiple sclerosis, and as such, it is probably not likely that saturated fats are causally involved in MS. I started mediating. I took things ranging from Vitamin D3 (4000-10000 IUs daily), fish oil, magnesium, copper, lipoic acid, Complex vitamin Bs, started fasting intermittently, started meditating and a longer list of things that I won't bother mentioning because they are probably more irrelevant to MS than all the things that I did list).

I'm generally well, but I can't tell you that I'm well because of all the things that I did do, or the drugs I took (I started with Copaxone, then Interferon's, and quickly changed to Gilenya because of research that came out of UBC (look up Helen Tremlett) which purported to show that, with respect to disease progression, interferon's don't seem to have a positive effect. Note, there are obvious limitations for this study, the main one being that it was not experimental (e.g. they didn't randomize a group to take interferons and another group to take nothing), and they relied on data collected by the MS clinics, which is, according to the neurologists who collected the data, unreliable and error prone). What I can tell you is that the process of trying to make myself better made me feel empowered (instead of helpless and depressed) and I can tell you that feeling, regardless of whether or not my actions actually changed the course of the disease, changed my life for the better.

The one line summary of all of the above: experiment, see what works for you, stand up for yourself, don't let anyone tell you you're wrong unless they can give you satisfactory evidence and most of all, accept the fact that life is uncertain, and it is made even more uncertain by this disease; do what you can, and accept that other than what you've done, you have no control over the situation and live your life. Please don't construe anything I've mentioned here as medical advice, find a physician you trust and is willing to work with you (e.g. doesn't suffer from God Syndrome) and take it from there.

Good luck my friend. I hope this helped.
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby ElliotB » Mon Oct 17, 2016 7:08 pm

It seems some of the side effects sound worse than how I'm feeling.


Not everyone experiences side effects, rarely all of them. I take a DMD and have no side effects.


And how is a drug approved by the FDA when they can't even say how it works

This is a good point. I take a DMD and know that it may not be doing anything. But I hope that it is. There is certainly no way of knowing for sure. I am not willing to take a chance.


Some will say they've been on a certain drug for 10 yrs and no lesions or attacks. Others say been this drug and only got worse.

This is also a very good point (all your comments are well thought out). No one knows the effect of the DMD on either of these types of individuals. The ones that had no lesions in 10 years might not have had none any anyway had they not gone on a DMD. People that have gotten worse on a DMD may have fared better without the drug or might have been much worse had it not been for the drug.

My two cents FWIW. IF there is a chance that a DMD works, it is worth taking - even 1 less relapse is a good thing. Also, DON"T rely on a DMD, be proactive in every way possible (diet, exercise, supplements, sleep, lifestyle changes), because you never know...
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby NHE » Mon Oct 17, 2016 10:36 pm

luckyme wrote:Some say been on this special diet for 10 yrs and I'm healthy as can be! Others say don't be a fool to treat with diet. Then I think the nature of this damn disease is so unpredictable that it may be possible to be on a FDA approved drug for ms for yrs with so called great results but how do we know it's actually the drugs that have kept the disease at bay?


Exactly! I was relapse and completely symptom free for 8 years between my first attack and my eventual diagnosis after my second attack. Had I been taking some drug or doing anything it would have been reasonable to conclude that the 8 year symptom free period was due to whatever I was doing. However, for me, it was just the natural course of the disease.
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby luckyme » Tue Oct 18, 2016 4:33 am

NHE wrote:Exactly! I was relapse and completely symptom free for 8 years between my first attack and my eventual diagnosis after my second attack. Had I been taking some drug or doing anything it would have been reasonable to conclude that the 8 year symptom free period was due to whatever I was doing. However, for me, it was just the natural course of the disease.


Hopefully, my case will be similar. My decision may change but I think I might not be so quick to listen to the doc who seems to push the dmd on me right away. I think my first goal shall be to get my body in check health wise and deficiency wise first. Being that deficient on things can't be makin me feel better for sure! Then I think I can make a better decision based truly on how I feel. The things vit d and b1 that I am low on May cause the symptoms I am feeling at this time. The drugs freakin scare me and I just think I would enjoy a non restrictive way of life for as long as possible. The more things are takin away from me the more I feel the disease has me. I.e you can't drink anymore while on this med. or you might have to rest for 3 days after your injection so do it on a weekend. I like to drink and my weekends are important to me! Just some examples.
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby luckyme » Tue Oct 18, 2016 4:50 am

Food for thought:
100 patients took a dmd for 10 yrs. 50 of them had no relapses. 50 of the had relapses at some point. The 50% who had relapses are 100% sure that the drug did not work. The 50% that did not have relapses can't be 100% sure that it was the drug that kept them from relapse!
Ps: this is only a hypothetical made up study so don't hold me to it but I think the point is solid.
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby jimmylegs » Tue Oct 18, 2016 10:15 am

more food for thought - alcohol places another drain on the body's nutritional status. so in different scenarios you might be looking at one a day vitamins for healthy average joe, extra strength for active people, or those with restrictive dietary habits, or those who might be feeling under the weather, another extra boost for those who also like to drink alcohol, and so on. a very general basic introductory way of thinking about such things, but still a potentially useful bit of info.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby Snoopy » Tue Oct 18, 2016 12:02 pm

Hi luckyme,

I think question lingers in my mind simply due to the fact that no one can tell me that here's is the solution.


This quote from you stuck out more, for me, than anything else in your post. If there was a solution we would have a cure for Multiple Sclerosis, unfortunately Multiple Sclerosis is still an incurable disease :sad: You can find a wide variety of personal experiences on what those with MS believe has helped or hurt their journey with MS.

I strongly believe in exercise. When I was diagnosed my mobility was severely effected as well as numerous other symptoms all pointing to spinal cord involvement. My MRIs were clear at the time of my diagnosis. Had I not followed my Neurologist's recommendation to walk as a way to regain my mobility I most certainly believe I would have been in a wheelchair very early on. To this day I exercise --- I weight train (4-station weight machine), use an Elliptical and a balance pad. I have worked with Physical Therapists 3 different times and continue to use the exercises learned.

At the time I was diagnosed (1985) there were no DMDs. The first DMD became available (Betaseron) to the general MS population in 1993, by lottery. I had a lottery number but when my number was close to coming up my Neurologist and I had conversation. It was mutually agreed to wait and not start Betaseron. It was the first medication of it's kind with many unknowns. My decision has remained through the years...I have never used a DMD.

My exacerbations, one in each year:

1985 - severe
1986 - severe
1994 - severe
2001 - mild
2002 - mild
2014 - mild

If I was taking a DMD at the time of the exacerbations it would have been assumed the DMD wasn't working and another DMD would have been tried. All of those years in between that I was exacerbation free would have been considered due to the DMD. Since there never was a DMD it's simply been the natural course of the disease. Lesion load (more or less) can happen regardless if the person is using a DMD or not.

There is absolutely no guarantees regardless of what you do or don't do. Your decision should be based on what you feel is best for you and your comfort zone. If you choose to not use a DMD and the MS gets worse or you have an exacerbation would you have regrets that you didn't use a DMD? If you would have regrets then your choice should be a DMD. If you wouldn't have regrets then going without a DMD could be the answer for you.
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby centenarian100 » Tue Oct 18, 2016 2:44 pm

luckyme: I think you are putting too much pressure on yourself and overthinking the decision. Why don't you just ask your doctor what s/he would recommend? If a particular drug is recommended, do some research on the data regarding the efficacy of the drug and the side effects. If you message me, I can link you phase III trials comparing the drug you are considering versus placebo. Obviously, the effect of a drug in an individual impossible to know, but the average effect over a large group of people and the potential side effects are well known and well studied. Just look at the data and decide if you think the potential benefit would be worth the potential side effects.

You can do lifestyle/dietary interventions regardless of whether or not you take a medication as other people have suggested.

-cent
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Re: Drugs or no drugs? It's more difficult than I thought.

Postby luckyme » Wed Oct 19, 2016 4:10 am

centenarian100 wrote:luckyme: I think you are putting too much pressure on yourself and overthinking the decision. Why don't you just ask your doctor what s/he would recommend? If a particular drug is recommended, do some research on the data regarding the efficacy of the drug and the side effects.


Nah. I just like to bitch and complain about this crap. I think it helps me cope in some way. Thanks to all for your 2 cents. Weather we agree or not it's still all good stuff and I need to hear from both sides. Iv done the research on all of them that are available for me. I don't like any of them to be honest. I have decent insurance. I wonder what these drugs will cost out of pocket? I called the drug benefits co and they wouldn't tell me what it costs until they have a script from the dr. I thought that was a little strange unless they needed a specific dose amount first. Or the poor lady I talked to just didn't feel like listening to me flip my lid!!!
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