Cladrabine - Movectro

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby Lyon » Thu Jun 09, 2011 1:01 pm

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Postby Loobie » Thu Jun 09, 2011 1:35 pm

I just read this entire thread and it kind of cracks me up. I've seen some hair splitting in my time, but this thread takes the cake! But along the way, there were some actual, fact based snippets for the original poster to contemplate/research further.

So I hope the original poster got the the help he/she wanted!
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Postby euphoniaa » Thu Jun 09, 2011 2:23 pm

bromley wrote:For those who are interested in DMDs and may have to make a decision on which one to take... the following may be of interest (a bit techy, but a lot of information):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100222/

Wow. What a wild discussion. :D

Hi again, Becia, sorry there are so many detours in this thread when you asked such a simple question – about Cladribine. Some of the info that appeared here has actually been very helpful to my own research, so thank you for bringing it up - and then stepping aside (or ducking out of the way) while the topic itself was hashed, rehashed, expanded, dissected, morphed, slung, and hijacked... :)

So anyway, first I tried a “search” for more Cladribine personal performance posts for you, but it’s so new that most posts here are just news updates. And I can’t find the “full prescribing information” for Movectro – as noted before, it’s only available in Australia and Germany.

But...the review document that Bromley linked in his post (see above) is excellent reading (Development of oral immunomodulatory agents in the management of multiple sclerosis) and included Cladribine. Some info was “techie” but it really went into detailed comparisons of the pros/cons of both the new orals and the older injectable/infusable ones. It then extended into an informative section on “Patient-focused perspectives” with an overview of DMDs in general.

I’m a patient who is searching for legitimate, scientific references to offer my neuro at my next appointment when we discuss my med decision. She’s an excellent, compassionate doctor who is honestly concerned about my health and the deterioration of my MRI reports, and I promised I’d research meds like a grownup. If I decide once again to forgo MS meds, it will be due to a thorough evaluation of my own personal medical history and the cost/benefit to ME. I refuse to resort to the excuses of Big Bad Pharma Conspiracies, Evil Money-Grubbing Neuros, etc.

One more note about oral meds that may not be clear to all is that so far (correct me if I’m wrong):
Cladribine/Movectro is only approved in Australia and Germany (for Becia).
Gilenya (fingolimod) is the only oral med approved in the U.S.
BG-12 (dimethyl fumarate), Laquinimod, and Teriflunomide are not approved anywhere yet.


I would also suggest that, when possible, all patients should find the “full prescribing information” on any med you do. Although the review article was great, it turns out that Gilenya is not likely a good choice for me due to many contraindications that I found only in the prescribing info (i.e., my history of macular edema, & med interactions).

As Bromley said:
Please remember that all agents are associated with particular side-effects and other attributes; hence the decision on which one is more appropriate for a particular person will require some careful thought. Individualised Medicine!


I also plan to use my own version of rainer’s suggestion to figure this out for myself:
Would love to see percentages of the non-orals too. Have always thought we need a sabermeteric analysis of treatments. For you non North Americans - http://en.wikipedia.org/wiki/Sabermetrics


NHE, thanks for the info on dimethyl fumarate (I guess I initiated that wild detour by adding the names to the meds.)

jgkarob, please feel free to take your meds of choice and post about them as you wish. One of the things I’ve always liked about TIMS is the fact that everyone seemed free to make their own choices – using meds, using alternatives to meds, or good naturedly bitching about it all. Too bad it sometimes goes on and on and on and on. :D

Becia, I also agree with Loobie:
I hope the original poster got the the help he/she wanted!


Good luck with your decision! And everyone, keep smiling. :D
(6-11-11 Edited to fix typos, add chemical names)
Last edited by euphoniaa on Sat Jun 11, 2011 4:41 am, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Lyon » Thu Jun 09, 2011 2:51 pm

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Postby euphoniaa » Thu Jun 09, 2011 4:19 pm

Lyon wrote:euphoniaa,

I think this one might have been posted elsewhere but seems pertinent here, although in the past 9 or 10 days Becia might have already decided
Becia wrote:thinking swap from copaxone to C but need more information.please help
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed



Yes, Lyon, you're right. That's the exact link that Bromley posted, that I reposted in the post I just made (right above yours), and then I went on and on about it (see below). :D And now I'm reposting it again (see below). I liked it. And I don't recall ever seeing a thread that wandered the way this one has, with so little attention to what was previously posted... :D

bromley wrote:
For those who are interested in DMDs and may have to make a decision on which one to take... the following may be of interest (a bit techy, but a lot of information):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3100222/



euphoniaa wrote:
But...the review document that Bromley linked in his post (see above) is excellent reading (Development of oral immunomodulatory agents in the management of multiple sclerosis) and included Cladribine. Some info was “techie” but it really went into detailed comparisons of the pros/cons of both the new orals and the older injectable/infusable ones. It then extended into an informative section on “Patient-focused perspectives” with an overview of DMDs in general.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby Lyon » Thu Jun 09, 2011 4:40 pm

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Postby CVfactor » Thu Jun 09, 2011 6:26 pm

This thread is really amazing. It sounds as though this forum was once a more reasonable place to come for people who don't know what to do when they first are shocked with the fact that they have MS. Now it seams there are people who are reluctant to post in support because it may start a firestorm as is evident from this thread. And that's really too bad.

Lyon,
Just wanted to let you know I'm in the metro Detroit area also. My doctor is a professor of neurology at WSU and I am very fortunate to be able to see him. I think if I had to rely on input from TIMS I would be lost.
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Postby HarryZ » Thu Jun 09, 2011 7:57 pm

You're a hard man HarryZ. You admit that you've evidently spend a bit of time corresponding with Ian, likely trying to gain his confidence. I had you pegged as the kind of guy who found the good in everyone.


Nah, not a hard man at all...once you get to know me :D And BTW, it was Ian who first e-mailed me to explain his posts.

You tell me.....out of the entire history of thisisms who else other than Ian are you aware of sending fine chocolates to friend and foe alike? Can you proclaim better evidence of a kind heart?


The kindest heart in existence one day and not so kind the next...it can happen to the best of us.

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Postby Lyon » Thu Jun 09, 2011 8:44 pm

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Postby HappyPoet » Fri Jun 10, 2011 7:14 am

The first reason for my post: The link to this thread was given to me by a pwMS who was too scared to post about the fine paid by Merck.

The second reason for my post: None of bromley's friends cared about bromley.

The third reason for my post: NHE deserved thanks for his contribution.

The fourth reason for my post: Both jgkarob's DMD working for him and Harry's contributions deserved acknowledgment.

Evidently, according to Lyon, this general forum has had problems long before this thread was ever started, but hopefully, the OP received valuable input and bromley will be back soon in good spirits.
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Postby jgkarob » Sat Jun 11, 2011 1:40 am

Okay, well I'm going to ignore all the emotional stuff above and address the OP.
I have a good e-pal in Australia who is on her third day of Cladribine.
I can ask her to relay her progress, but she was quite adamant that after her experiences on here, that she's never posting again.
This is a very, very confrontational website, with the exceptions of the various drug boards, (not Tysabri, as Harry Z stirs things up there). The CCSVI forum is way too scary and this board is pretty bad at times.

Let me just explain something. I was in the UK at the start of the risk-sharing scheme, which was abadoned due to the abysmal record-keeping of the various neurology departments NOT because the drugs failed to work and also because the MSS in the UK wanted people with aggressive MS to have better access to the newer drugs (Tysabri and Campath).
Back when the risk-sharing scheme was big news - people were posting with great joy at finally having 'evidence' that the DMDs don't work.

I was brave and corrected this view, only to have NHE taking offence at what I posted. Hardly objective - but this places him, Cheerleader and various others in the anti-drug camp. She's quite open about this - but to be honest, Joan, brave CCSVI advocate that she is - and I mean that very sincerely, should stick to CCSVI.

Fine - but no one thought about how all this glee and schadenfreuden affected those people who were fine taking their DMDs and if you have non-progressive RRMS, relapse reduction is paramount.

We had to fight very hard to get access to the DMDs.
You try living in the worst country in the western world for MS. It's now the second-worst. Wow.

Those of us who are 'burned' here, generally retire and don't come back - ever.
Which is pretty sad news for Arron.

Here's a question for you all.
Just how many pro-DMD (CRAB) posters post here?
Can you find any except for me?
I'm not a drug rep, just a person who feels extremely fortunate that Rebif actually worked and without fluey side-effects. I'm an idiot for posting this, but it's time that someone wrote how this board affects them.

Incidentally, I'm not well because of Rebif. I'm well now, through a strict diet, LDN, Vitamin D3 and B12 and a lot of exercise and also because I had to move to a country with less humidity. I left my family behind to keep my mobility. We live in extraordinary poverty, but at least I can walk down the street here, without losing my balance and focus, which would happen in less than 5 minutes in the UK.
There, I was housebound. Here, I'm not.
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Re: Cladrabine - Movectro

Postby NHE » Sat Jun 11, 2011 3:12 am

jgkarob wrote:I was brave and corrected this view, only to have NHE taking offence at what I posted.


It's best not to make assumptions. I took no offense at anything you posted. My reply was due to confusion as you had chosen not to quote the original text you were commenting on making it difficult to determine which post you were referencing.

Fine - but no one thought about how all this glee and schadenfreuden affected those people who were fine taking their DMDs and if you have non-progressive RRMS, relapse reduction is paramount.


I doubt that anyone here at ThisIsMS honestly takes pleasure in the misfortunes of others. We are all here since we have to fight a common enemy, MS, and hopefully not each other.

I'm not a drug rep, just a person who feels extremely fortunate that Rebif actually worked and without fluey side-effects. I'm an idiot for posting this, but it's time that someone wrote how this board affects them.

Incidentally, I'm not well because of Rebif. I'm well now, through a strict diet, LDN, Vitamin D3 and B12 and a lot of exercise and also because I had to move to a country with less humidity. I left my family behind to keep my mobility. We live in extraordinary poverty, but at least I can walk down the street here, without losing my balance and focus, which would happen in less than 5 minutes in the UK.
There, I was housebound. Here, I'm not.


I'm honestly happy to hear that you're doing better. With so many variables to consider, it would be difficult to narrow down your improvements to any one specific element. Sometimes though, we have to throw everything we can at this disease in order to make any progress.


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Postby HarryZ » Sat Jun 11, 2011 6:22 am

Fine - but no one thought about how all this glee and schadenfreuden affected those people who were fine taking their DMDs and if you have non-progressive RRMS, relapse reduction is paramount.


I'm not sure that I would agree with you on that statement. I (don't have MS but my wife did for 35 years) and many others have lived through the development, release and subsequent general use of the DMDs. While highly touted when they first came out, their (CRABs)overall effectiveness has greatly diminished. Even the experienced MS docs will tell you that. But that doesn't mean that they don't work for some people. They do but for a small minority.

Stating this doesn't mean a person doesn't have any feelings for MS patients using the CRABs. The DMD user has a right to hear all sides of the argument re: these drugs and then make his/her own decision on whether to use them. Same goes for Tysabri and the new orals.

Following threads on ThisIsMs will subject the reader to various opinions. In some instances, and this happens on EVERY MS forum I've participated, the discussions will become rather heated and unfortunately, sometimes nasty. What people say and how some interpret that gets misunderstood which is exactly what has happened in this thread. That's when a moderator will hopefully step in and cool things down.

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Postby Lyon » Sat Jun 11, 2011 6:42 am

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Postby Tiffany » Sat Jun 11, 2011 9:11 am

The second reason for my post: None of bromley's friends cared about bromley.


Awww I care! Even though his original post nearly caused my early demise when I choked on my cup of tea.... :o

To be honest I think a lot on this thread has been taken out of context and hence has blown way out of proportion to what was ever intended - just my opinion!

As to the OP, you only have to read back through the thread to see he/she has not really come back to join in :oops:

Life really is too short and sometimes it is best just to let a thing go.

Bromley's choccies are too die for - does this post qualify me for my very own box? Robin/Raven rationed his out to one a day which was extremely mean!!! No! I have no dignity or self respect when it comes trying to blag free choccies!! :wink:

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