EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: Sep 26, 2007 Posts: 135 Location: East Coast USA
Posted: Tue Nov 06, 2007 7:45 pm Post subject: Finally diagnosed...
Well yesterday at the second neurologist I was finally diagnosed with MS. Since I feel so good(other than my mostly healed optic neuritis in my left eye) I'm really not super upset or worried. They want me to go on either rebif or beta seron, depending on what my insurance covers. I was wondering if I should opt out and participate in the oral beta seron trial. I know I stand the risk of getting a placebo so do you think it's really worth it?
Posted: Tue Nov 06, 2007 9:26 pm Post subject: The ABC drugs
The Betaseron (3 years), Avonex (7 years), and Copaxone (1 year) did NOTHING for me except negative side effects. I continued to deteriorate during their use. Now I take no treatment but diet--NO carbohydrates (for 2 weeks). Since the interferons are designed to target the immune system and I do not think my MS is "autoimmune," I don't see how they could ever be effective--and they weren't with me.
I understand the need to feel that we are "doing something" in the search for answers. We can only examine our own situation and do what we feel is best for us.
Matt, sorry to hear about your diagnosis, but you sound pretty calm about it. I'm not part of a clinical trial. I take rebif. However, there are many members of this community who participate in clinical trials and I'm sure some of them will chime in with their experiences/opinions.
I think there's no easy answer to your question about whether entering a trial with a placebo arm is worth it -- it's up to you. Since I don't have anything helpful to say, I'll steal from somebody who does, so here's a comment from Muu that I think offers good advice:
Quote:
I like you have SPMS and was offered the opportunity last year to join the Lamotrigine trial at the National Hospital here in London. I've posted on the Drug Pipeline forum. One of the things I said there and I'll repeat here is that participation in a trial has to be within a "persons comfort zone". You may listen to the opinions of others but ultimately you need to believe it's the right thing for you.
When I was offered the chance to participate, my first reaction was YES!! GIVE ME THE DRUGS NOW!! After all, there didn't seem to be much else on offer for those of us at the SPMS stage apart from exercise and diet and hope. I didn't want to sit back and do nothing and wait to get worse. I then went back and thought about it less emotionally, weighing up the pros and cons, possible benefits compared to possible risks, the monitoring and support I would receive, the time commitment, tests necessary and so on. I spoke to my GP and also considered how I would feel if I discovered that I'd received the placebo as opposed to the real thing. Would it have affected my decision to participate? Would I feel duped? In my case there was also the bonus that Lamotrigine had been used for a while for other conditions.
Ultimately, I decided to go for it. I'm comfortable with what I did. But I have read of others whose nerve broke whilst on trials or could not accept the potential risks.
Posted: Wed Nov 07, 2007 1:03 am Post subject: Re: Finally diagnosed
MattB wrote:
They want me to go on either rebif or beta seron, depending on what my insurance covers.
My advice has been and will continue to be as follows. Get the doctors' prescribing information for any of the drugs you are considering. Next, get a medical dictionary. I happen to like Stedman's but there are others (and you can usually find these fairly inexpensively at a used book store or for free at your library, I bought an older used edition for about $7). Next, look up every word in the prescribing information that you're unfamiliar with and write it down. Once you've got a good understanding of the information that's being presented you can make a comparison between the available drugs. This is the path that I followed and, yes, it takes a little bit of effort but I feel it's worth it in the end.
You can read one of my recent comparisons in the following thread.
http://www.thisisms.com/ftopicp-31761-.html#31761
Note that in a prior post I attached some of the data plots for Avonex while in a later post I attached a data plot for Tysabri (it's on the next page in that thread).
As the above post indicates, I wound up choosing Avonex. One of the factors in making this decision was the lack of injection site reactions which are described as injection site tissue necrosis by the prescribing information for Betaseron. Another factor was the fact that Avonex is raised in mammalian cells and is identical to natural human interferon-beta so it has less tendency to elicit neutralizing antibodies.
Keep in my though that as those data plots illustrate, the current drugs have a limited efficacy. Therefore, you may want to consider using a complementary treatment such as diet, supplements, etc. many of which are discussed in the other forums. Lastly, ask a lot of questions and read references that others have found useful (you may want to take a look through the Reading Nook forum).
Joined: May 04, 2006 Posts: 3456 Location: Mid-Michigan
Posted: Wed Nov 07, 2007 7:37 am Post subject:
I don't spend a lot of time considering the crab drugs, but I'm not familiar with an oral betaseron clinical trial being planned now or in the near future. Is there one?
As was mentioned above, it's great to get input from others, but ultimately entrance into a clinical trial has to be something you're comfortable with and, at least in your mind, has to offer the possibility of some meaningful benefit to you.
Although testing these treatments could later benefit others, none of us are entirely selfless creatures. I'd have to wonder what benefit you would find from an oral betaseron trial. Accepting the possibility of placebo to avoid needles? Doesn't seem worth it, at least not to me.
Yes, my wife is in a clinical trial and yes, her MS was even milder than yours. A week of mildly slurred speech has been her only MS experience so far. She had originally started out on Rebif, and I imagine she'd still be on it but her liver enzymes elevated and she was taken off.
In the interim period she decided giving herself shots all the time wasn't the lifestyle for her. I suppose I could have talked her into periodic infusions of Tysabri, but at that point I considered PML a risk.
I'd been reading about Tovaxin, which seemed to have a very favorable risk benefit ratio, and as fate would have it, the Tovaxin IIb clinical trial was announced within driving distance and the rest is history.
I think clinical trials are a considerable option, but it has to offer you some advantage and it has to be an educated decision.
Good luck in whatever you decide.
Bob _________________ Wife diagnosed with RRMS in Feb. 2006.
Joined: Sep 26, 2007 Posts: 135 Location: East Coast USA
Posted: Wed Nov 07, 2007 9:17 am Post subject:
The neuros at my hospital, Thomas Jefferson in Philadelphia, told me they have an oral beta seron trial going on when they were telling me there were currently no oral treatments on the market.
It's hard for me to be more than extra anxious since I feel so good other than a little blurriness in my left eye. If it weren't for MRI I would never know about the lesions. I'm definitely going to explore all of my options, including diet and such. Is that what your wife does?
Joined: Sep 23, 2007 Posts: 169 Location: Lexington, KY
Posted: Wed Nov 07, 2007 10:04 am Post subject:
When I was diagnosed in August, 2006 I was pretty devastated but my husband said something to me which made me think differently...He said that there are so many possible treatments in the works right now that I could just go on the crabs and know in 5 or so years there will be better more effective treatments or I could go into a clinical trial for something I truly believed could make a difference. Either way, he thought I would be okay. I chose to try the Tovaxin IIB trial which came to be right when I was diagnosed. I know there's a 33% chance that I'm getting placebo but I figured that one more year hopefully won't make a big difference in the grand scheme of things. If I had gone along with my gp, I would still be waiting to see if what was wrong with me was going to go away on it's own. (He thought it was all in my head and prescribed me Xanax.) Go with what your gut tells you to try. If you try something and don't think it's worth it then try something else.
Whatever you choose, there are a lot of people on this site that can give you feedback on their experiences with it. And if you decide to venture out on your own and try something that's not mainstream please let us all know how it's working out for you.
Don't allow yourself to get too stressed over it and good luck with whatever decision you make.
Marcia[/u] _________________ DX'd 08/2006, RRMS, contemplating post Tovaxin therapies
We all make decisions based on our particular circumstances. What works for one person may not work for another. That's what is so great about this site. Each person can post about their experiences and what they've decided to do and no one will judge them.
You can always decide to proceed with the trial and if you find it necessary you can change your mind then. You don't have to be locked in long term. And even if the researchers want you to commit you have to have your own best interests in mind first. So do what feels right for now, knowing that you can change course later if you need/want to.
Joined: May 04, 2006 Posts: 3456 Location: Mid-Michigan
Posted: Wed Nov 07, 2007 4:09 pm Post subject:
MattB wrote:
The neuros at my hospital, Thomas Jefferson in Philadelphia, told me they have an oral beta seron trial going on when they were telling me there were currently no oral treatments on the market.
It's hard for me to be more than extra anxious since I feel so good other than a little blurriness in my left eye. If it weren't for MRI I would never know about the lesions.
That's good, even though I've seen studies showing that a good attitude doesn't affect progression, there also isn't any benefit in running yourself through the mill. Regardless of the fact that I don't have much respect for the crabs, this time right now is about holding off progression to the highest degree possible until better treatments come along and if you have insurance, you might want to consider getting on some kind of treatment, if for no other reason than not being able to kick yourself in the butt in the future for not doing something.
MattB wrote:
I'm definitely going to explore all of my options, including diet and such. Is that what your wife does?
Actually, we go to the clinical trial appointments and she puts MS out of her mind the rest of the time. That isn't a sales pitch for Tovaxin but, like yours, her MS seems mild and so far she's been spared any "rude awakenings". Whether it's the Tovaxin or the natural course of her MS, I can't say.
Bob _________________ Wife diagnosed with RRMS in Feb. 2006.
Joined: Jul 26, 2004 Posts: 118 Location: Sunnydale, USA
Posted: Wed Nov 07, 2007 5:19 pm Post subject:
My symptoms were very mild too, and easily could have ignored them. but I didnt' and had the MRI and was diagnosed. when I was deciding what course to take, I decided to try an interferon because of some research (it was actually copaxone research--not an interferon) that suggests it's better to treat early rather than wait.
if I'd had the oral betaseron clinical trial option, I wonder what I would have done. I might have gone for it. But it'd be nervewracking, especially if symptoms returned while on it.
best of luck. and if you do participate in the trial, thank you from the rest of us who really would prefer to take a pill rather than stick ourselves.
Their title clearly summarizes their research department’s analysis of the study. Another review of the same data from the UK presents and interprets the results quite differently and comes to a different conclusion.
As you would expect, not many people accumulated fixed disability during the three years on the BENEFIT study. After all, these are basically well people at the earliest stage of multiple sclerosis. The numbers hitting the disability marker were 42/292 from the early group and 40/176 in the delayed treatment arm. From these figures emerges the “40% reduction in risk of disability” headline. Another way of expressing the same data is the number needed to treat with interferon early, rather than late, to avoid one person acquiring fixed disability over three years is 12.
In the end, we have to decide whether BENEFIT is sufficiently robust to radically alter our approach to clinically isolated syndromes. I suggest not. Not because the trial was poorly performed or badly analysed, but it was just too complicated and too small.
Different opinions seem to be the norm in MS. However in this case the second analysis (well worth reading in its entirety I think) certainly raises questions in my mind about the credibility and impartiality of the NMSS research department's report on early treatment with betaseron. As you try to decide on a course of action I think multiple sources of data analysis and research are important in helping you (or anyone) make better-informed decisions.
Best wishes--no matter what you ultimately decide.
I forgot to get the literature on the trial but I'm entirely sure they told me about it and offered me the literature as well. I can't say why it wouldn't be on the site. Next time I talk to my neuro I will ask them to send me the information and I'll let you know.
Joined: Jul 26, 2004 Posts: 118 Location: Sunnydale, USA
Posted: Thu Nov 08, 2007 9:54 am Post subject:
now I remember a little more clearly. the "study" I was referring to was actually just an analysis from long term data of copaxone users (not the betaseron trial discussed above). I saw this data analysis in my neuro's office, who had worked with a university statistician to analyze these long term data so that you could see the legacy of starting early. (my neuro's a math hobbyist). I don't think the data had been published that way, and so the analysis didn't go through peer review. anyway, it was copaxone, but since I didn't think my easily bruised flesh would tolerate the every day stick, I went with rebif. right or wrong, it was a factor that weighed into my decision.
Posted: Thu Nov 08, 2007 7:28 pm Post subject: URLs
Matt
Sorry about the links—they’re working on my end and since I’m not an IT wizard all I can do is give you the web addresses (these are also links that are working on my end.)
Web address for the current issue of the journal Advances in Clinical Neuroscience and Rehabilitation which is where that review was published: http://www.acnr.co.uk/contents.htm If you scroll down and click on Journal Reviews you will also find the same review on interferons. I primarily posted the link to the journal as a reference.
Hope that helps and that one or the other of the these works for you. If not, maybe someone else can advise or I can try to copy and paste the entire review.
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
We encourage you to also visit our Multiple Sclerosis story and support community on Experience Project.
Experience Project is a vast and powerful community where people connect anonymously through life experiences. It's made by the same people who built This is MS,
on the premise that no one life experience-- like having MS-- defines a person. It now covers over 2 million life stories. Find and share yours!
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
