Would you take a MS treatment you knew made no difference?
University of Alabama at Birmingham, Stanford researchers announce major discovery on multiple sclerosis
A groundbreaking study by UAB and Stanford University researchers has revealed that the incurable neurological disease multiple sclerosis has two distinct forms.
One form appears to respond to the common drug used to try to slow the progression of the disease, beta-interferon. The other does not, or may actually be worsened by the drug.
Looks like it will just need a blood test to determine which form of the disease you have, they reckon 30 percent of people taking beta intaferon do not respond to the drug.
Personally I would love to know whether these drugs actually do what they claim before I started taking them, why inject something into your body that does absolutely nothing and could possibly make things worse!
http://blog.al.com/spotnews/2010/03/post_524.html
;o)
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Please Note: Any advice given on OzMS must not be taken as medical advice, it's merely advice given by members from their own experiences of living with Multiple Sclerosis. Always check with your GP or Neurologist or other medical professionals, it's the smart thing to do and only logical! If you have something to contribute please do so, everybody has something to offer.
Comments
copaxone
i wonder if that applies to copaxone?
Interesting Darin, I've found
Interesting Darin,
I've found a further article which goes into the issue in more depth.
It's good news and bad news - they say that "someday" there will be a test that can distinguish between who it will work for and who it won't. At this point in time it is not known - so Darin's question is pertinent? It might end up being a case of "suck it and see", if you keep relapsing then I guess the answer will be in the negative.
As to where this places Copaxone, I'd like to see how they configured the research on the animal model, I recall that copaxone has used the same model in its research. The fact that they looked at beta seron in the research makes me wonder if the research was funded by a drug company.
http://insciences.org/article.php?article_id=8624
This is big news though!
Helen.
and wait there's more
Gee, how cynical am I that the answer would be found in the business pages!!! Always follow the money trail!
http://www.businessweek.com/news/2010-03-28/test-predicts-which-patients...
Helen.
Copaxone caused me a lot of grief
I'm still suffering long term effects from Copaxone. Have to see an Oral Maxiafacial specialist every 6 months because of it.
It has caused bony lesions to grow everywhere in my gums, roof of mouth and under tongue. Had none of this prior. Had great strong white teeth - not one filling. Still do not have any fillings. I had a mouth guard specially made (for something separate) 2 years before taking Copaxone that proves I had no such problem with any bony lesions in my gums.
When I started using Copaxone my gums swelled and bled constantly. Was told that this was common and should settle within the first few months. Six months on still happening. Was told a few people fall into the 12 months category. 15 months comes and still no change.
It wasn't until I stopped the drug and my gums stopped bleeding and swelling that I noticed all these hard bones pushing out all over the place in my mouth. Have found out since that Copaxone can cause gum abnolmaties and gum disease!!! If I had have known this I would have discontinued it in the early days, but was told it was nothing to be concerned with. Was told this by the drug co themselves!
So anyone using it should pay special attention to their pearly whites and gums. Any changes could well be a direct cause from Copaxone.
As to answer Darin's question, I certainly wouldn't take medication if I knew it would make no difference.
If what they're saying is true, it would certainly explain the fact of what the drug co's say, as in percentage wise the drug only works in 23-28% of cases. Very interesting I think!!
If they have discovered these markers I would imagine it shouldn't take too long for a blood test to become available. That's just my thoughts on it.
Yes I Would......
Well, the same question could be applied to those who are participating in the drug trials for future MSers to take. During the trials, some participants take a placebo and some participants take the actual drug being trialled.
When and if I am accepted into the Teroflunomide oral drug trial (find out next month), I could very well be taking something that is absolutely useless to me, however, the data will be beneficial to all of us. So my answer, is yes, I would take a drug knowing that it may have not any benefit to my MS at all, but could benefit MSers around Australia.
Just my two cents worth.
Nobody will ever win the battle of the sexes.
There's too much fraternizing with the enemy.
The article
Here is the abstract of the article:
Interferon-b (IFN-b) is the major treatment for multiple sclerosis. However, this treatment is not always effective. Here we have found congruence in outcome between responses to IFN-b in experimental autoimmune encephalomyelitis (EAE) and relapsing-remitting multiple sclerosis (RRMS). IFN-b was effective in reducing EAE symptoms induced by T helper type 1 (TH1) cells but exacerbated disease induced by TH17 cells. Effective treatment in TH1-induced EAE correlated with increased interleukin-10 (IL-10) production by splenocytes. In TH17-induced disease, the amount of IL-10 was unaltered by treatment, although, unexpectedly, IFN-b treatment still reduced IL-17 production without benefit. Both inhibition of IL-17 and induction of IL-10 depended on IFN-g. In the absence of IFN-g signaling, IFN-b therapy was ineffective in EAE. In RRMS patients, IFN-b nonresponders had higher IL-17F concentrations in serum compared to responders. Nonresponders had worse disease with more steroid usage and more relapses than did responders. Hence, IFN-b is proinflammatory in TH17-induced EAE. Moreover, a high IL-17F concentration in the serum of people with RRMS is associated with nonresponsiveness to therapy with IFN-b.
Karen, you need to read the article properly and stop scaring the newbies, as not many people have huge issues with Copaxone!
Cheers,
Jodi.
"Don’t judge each day by the harvest you reap, but by the seeds you plant" Robert Louis Stevenson.
Deanna
This is very different to a drug trial, these are drugs that they prescribe now as a treatment for Multiple Sclerosis in particular Betaferon/Betaseron, but lets pretend for a minute that the blood test will cover all treatments or at least the ABCR's. Now if the Neuro did the blood test and it came back as:
Because of the type/form of MS Deanna has, it would appear that none of the ABCR's will have any effect in helping her MS in anyway, would you still want to take one of these drugs if you could still get access to it?
If as the study suggests that 30 percent of MSers that take Betaferon/Betaseron are basically wasting their time or that it could actually make things worse, then this to me is quite groundbreaking indeed.
Let's face it there are many people who take the drugs expecting to get some benefit from them, but we know that there is a percentage who are in fact wasting there time. It's a waste of money, it gives people false hope, it gives people other problems.
Treatments shouldn't be a lottery, they should do what they say they do. Most drug treatments do exactly that, apart from the odd hiccup of course, the odd hiccup is to be expected, but 30 percent could not be classed as the odd hiccup. With MS we are just a part of this huge lottery in every step and stage and treatment of the disease.
If I knew without a doubt that these drugs did what they claim to do, I would be less hesitant and would probably have been taking them long ago, but I don't like maybes, I want an assertion that I will get some benefit, sorry that's just me, I can't help it.
By the way I just got sent literature on two drug trials to look over, I will consider doing one of them, but I know full well that there is absolutely no guarantees of success, I would do it because it just needs to be done, plus I can get a free feed at the clinic lol. Hopefully something good would come out of the trial but being a "trial" there are no guarantees and no promises of success.
Of course a stage three trial would suggest that a drug most probably does do what it is intended to do, now it's just a matter of checking for unforseen problems with a larger cross section of "guinea pigs". I am all for trials and truly believe that we should do them. as it's needed and is the way forward for research to hopefully find an answer.
Anyway this is off topic ;o)
Multiple Sclerosis Portal | Australian MS Info
not really off topic
Deanna,
You get what that article is about and how ground breaking it will be in respect of future treatment for MS when the appropriate blood tests have been developed. There will be some clarity surrounding the prescription of interferons = and eek horror that might effect drug sales.
What you say about the new possible trials that you are considering is just the first step in the process - look how long the interferons have been around for them to get to the point in working out that some of them don't work on some people. It's baby steps. What does the proverb say - 'a journey of a thousand miles begins with a single step'.
Helen.
Response to Darin & Helen
Hey Darin
I was just responding to the original posted question 'Would you take a MS treatment you knew made no difference?'
I'm sorry if you felt it was off topic but, to me, this is applicable to all MS drugs whether their in the CRAB group or not. The articles posted, will certainly make the drug takers on this site (gee, that sounds bad doesn't it LOL) who may or may not be taking a beta intaferon think about their treatment, and how effective it really is.
HELEN
You're exactly right when you said look how long the interferons have been around, and how they've just made this new discovery now. To me, diseases and the medications that treat them, are a continual learning process. The lesson is only complete once a cure is found.
Nobody will ever win the battle of the sexes.
There's too much fraternizing with the enemy.
Deanna, I think it's great
Deanna, I think it's great for anyone who wants to participate in drug trials to see if something may or may not work. But that's not for me. I'm not keen in playing russian roulette, and that's what it'd be for me with the drug sensitivities I have. But I applaud those people who do.
But basically I would not take a drug on the market if I knew it wouldn't benefit me, why would I? BUT if there was a test to show that without a doubt I would benefit, well that's a totally different story. So it will be great if such a test can be performed. It would take away a lot of heartache for people because we would know one way or another if it was going to help.
Jodi, I have a right to express what has happened to me personally from any drug I take from MS. I'm sorry if this bothers you but that is what has happened to me and ALL people on any drug should be made aware of what things may happen, and if something unusual is happening and the drug co's just say it's normal and will subside and it doesn't, they should then consider all options; that being whether the drug is causing other underlying issues or whether they should try another drug etc; and discuss this with their neuro's.
I get really ticked off when people only want to discuss the GOOD of everything and dismiss the bad. This is the real world and unfortunately it's not all pretty but it's what we make of it that counts!
There are some very nasty side effects with many drugs and personally if I was considering a new drug I would want to go in with my eyes wide open of any possible ramifications! Because of my experience with this so-called drug that has the 'least side effects', you won't get me near another MS drug unless it can be proven to me that I WILL benefit, not a maybe but a definite. Let me make it clear too that the bony lesions weren't the only issue but they are the worst! and cause me a lot of problems.
If you experienced what I have you would more than likely feel the same way. I'm not trying to scare anyone but expressing that anyone on the drug that notices these side effects should pay closer attention as MOST people would never associate a problem with their teeth or gums due to an injection in their body!
to take or not
Deanna & Darrin,
I think it is great that you are looking at going on trials. I was on one & yes didnt know if it was going to work or not but worth trying for the possibility of good to ms treatment in future. So yes, I guess going on trials counts as not knowing if they work or not but we do need guinea pigs too to test it out.
As for the crab's I was not properly informed of risks till after I was on them & think this is important.
Karen, I think it is great that you are prepared to sit down & write what happened to you, you are not scaring newbies, but just letting them know/making them aware that any drug has risks & not to ignore anything that happens when taking them. It is also hard for you to share some of this I am sure as you struggle with all your health issues.
I wish someone had warned me of some of the side effects before I started as I didnt know anything about them at all.
I agree that we should discuss the good & bad of any medications.
Breathing in, breathing out, I return to my own blessed center.
I am ready to receive miracles!
Hey Sue
Hey Sue
I totally agree with you about people sharing their experiences, both the good and the bad, about any MS medications, CRAB's or not. One of the reasons for this site, is to learn from each other. Darin and Helen's articles have certainly added another thing to think about if one is considering taking a beta intaferon, and is is this sharing of this information that can help someone make a some what informed decision on what drug to take, if any.
Nobody will ever win the battle of the sexes.
There's too much fraternizing with the enemy.
In answer to the original
In answer to the original question, I would have to look at 2 different scenario's.
If in the future it was proven (after many years of clinical trials) that this theory with the blood test proved correct, and I was in the group they found would not benefit at all from the meds, then no, I would not be taking them. But I think by that stage of the game, the doctors would not be allowed to prescribe them for that group, as they may not fit the right criteria anymore.
The 2nd scenario is the present time, where this is still a theory, so I would continue taking my DMD, even knowing that I may be in the group that wont respond. I would continue taking them, as this theory may not be proven for many years, if at all, and I do not want to run the risk of stopping meds and finding out I was one of the lucky ones after all who did respond to my meds, and possibly cause irreversible damage (remember, I am the eternal optimist, and I am hanging out for that cure or 100% effective treatment, and hopefully a drug that repairs damage, hehe).
I wonder, the 1/3 of the population who they say are not going to respond to DMD's, I wonder if there is any link between that, and their disease progression. Are these the people who are more likely to go onto to develop SPMS, or is there a link with PPMS I wonder? food for thought....
Cheers Kristy
Life is like a box of chocolates.... never know what your going to get
Kristy's last thought
Hi Kristy,
I must say that in relation to your last comment relating to the 1/3 that interferons don't suit, that they may well fall into PPMS, or those that are worst effected, but then again I have an Aunt who was diagnosed at 46, she's just had her 71 st birthday, when she was first diagnosed there were no drugs and when they did become available she chose not to go on them she pretty damn well, so yet again chalk it up to one of those many mysteries that is MS!
Helen.
Yes Helen, MS certainly has
Yes Helen, MS certainly has its mysteries hey!! Thats good about your aunt... hope I am as good 20 years from now
Life is like a box of chocolates.... never know what your going to get
Video link to Nature explaining interferon research
This is a short clip from the Nature magazine giving a brief and understandable summary of the ground breaking interferon research. The clip is spoken by the lead author of this study.
http://www.scientificamerican.com/video.cfm?id=74470522001
Helen.