Have injection therapies improved your MS?

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Have injection therapies improved your MS?

Postby surfbird » Wed Sep 15, 2010 2:33 pm

Forgive me if this has already been discussed...I tried to search the boards and didn't come up with anything (perhaps I'm not using the search properly).

In reading some of the forum posts, I see a some people saying that injection therapies don't really work. Is there anyone out there that feels their injection therapy DOES make a positive difference?

I agreed to do my therapy realizing it is for long term benefits and I won't see any short term improvements. It's difficult for me to even gauge if they are working because aside from minor back pain and a flashing light in my left eye, I am totally symptom free. Hopefully I stay that way, but at what point would it be safe to get off the drugs if that's the case? My doctor said I'll have to take the injections until they find a cure for MS. I know it's possible that I'll have flare-ups on the medication - so how do I know if it's really doing anything?

I want to do everything I can to prevent this from getting worse, but at the same time, don't want to needlessly put myself through pain and pump drugs into my body. I'd love to learn more about CCSVI as well, but I don't know if that is even appropriate for me since I've only technically had one flare up and am without symptoms.
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Postby flautenmusik » Wed Sep 15, 2010 5:04 pm

*shrugs*

I don't know if anyone can honestly answer since MS is a person-to-person disease. How do we know if lack of progression is from DMDs or just the course of the disease?
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Postby patientx » Wed Sep 15, 2010 5:18 pm

You hit on the million dollar question there. And, unfortunately, there's not a good answer. (I think it goes to how little is known about MS, despite all the man-hours and dollars spent on research.)

It's true with the DMD's you're not going to really know if they're making a difference. You could inject Betaseron for the next 20 years and not have another relapse. But, at the end of those 20 years, you won't really be able to say if it was the Betaseron that did the trick. Some people decide not to take a DMD and do just fine. The problem is, without a way to look into the future, you won't know if you're one of those people.

Many decide against using one of the injectables, and the reasons vary. Some have looked at the data and decided that the data just isn't strong enough to justify their use. Others suffer bad side effects or complications. Some still have relapses and get worse even while taking a DMD. And, sadly, some just can't afford them.

If none of the above apply in your particular case, maybe it's worth trying the Betaseron. All of the DMD's do have clinical data showing a reduction in relapses (even if it is pretty underwhelming). And you can always decide to opt out later. True, these drugs are meant to be used indefinitely. But, one way to look at it, is your buying time until something better comes along. CCSVI might be it. But there are other possibilities, too. Campath is well into its phase 3 trial and has shown good results (though not in everyone). And the protocol used in the these trials is 2 infusions, spaced a year apart - not an indefinite infusion schedule.

I'd say try everything you can to keep the MS at bay until a better answer comes along. This might include not only a DMD, but also vitamin D, diet, antioxidants, etc.

Of course, this is only my 2 cents, which might only be worth half that...
Last edited by patientx on Thu Sep 16, 2010 10:23 am, edited 1 time in total.
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Postby MrSuccess » Wed Sep 15, 2010 5:42 pm

good explanation PX . I agree with all you say.

Lot's of ways to go .....




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Postby Bubba » Wed Sep 15, 2010 6:34 pm

patientx wrote:It's true with the DMD's you're not going to really know if they're making a difference. You could inject Betaseron for the next 20 years and not have another relapse. But, at the end of those 20 years, you won't really be able to say if it was the Betaseron that did the trick. Some people decide not to take a DMD and do just fine. The problem is, without a way to look into the future, you won't know if you're one of those people.


I'd say try everything you can to keep the MS at bay until a better answer comes aloing. This might include not only a DMD, but also vitamin D, diet, antioxidants, etc.




BANG! Well said! It is a "maybe your damned if you do and damned if you don't" We just dont know....
Personally.... I decided on Rebif and I havent had any more relapses. Is it because of the Rebif? Dontknow. Natural progression? Dont know?
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Postby swelves » Wed Sep 15, 2010 8:55 pm

BELIEF - learn to believe injection works on me.

I've been on Rebif for a year right after having ON and dx with MS. Whenever I felt not well, I thought it's from injection. After 2 mths of injection, I had numbness, stiffness & weakness on my feet. It lasted for 2 mths. I told myself if I chose injection, so no more negative thoughts on such. I'm ok since then.

I hope you do well with your injection too :)
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Postby Wonderfulworld » Thu Sep 16, 2010 2:25 am

Hi Surfbird
I know I've posted before about this but I will go through it again for you - I was considered 'worsening RR-MS', I was having 4 relapses a year on Rebif and getting worse - I think my MS was actually more active on Rebif than off. My neurologist felt Copaxone would not be strong enough and advocated mitoxantrone. I wanted children so I refused and tried Copaxone. My MS is firmly back in RR-MS after 5 years on Copaxone. I feel very good (MS is still there and sometimes active but not as bad as it used to be) all things considered as I'm 12 years after diagnosis now.

It is impossible to know what improved my MS. Around the same time that I started on Copaxone I gave up smoking and found out I was a coeliac (went on gluten-free diet for life) so it's hard to tell what thing helped, or maybe all of them together?

That said I'm slow to move from Copaxone, becuase I've done so well on it with my EDSS even reduced. It hasn't all been without a cost. My legs and behind are covered in lipoatrophy but the way I see it, my legs are still walking. I can walk for an indefinite amount of time now, 6 years ago I could not because of spasticity. So for me I think Copaxone has helped.
HTH and good luck with your decision.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby jgkarob » Thu Sep 16, 2010 3:04 am

I'm with patientx on this.
I'm lucky in that since my first odd 'event' in 1993, that I haven't progressed much at all.
I've been on Rebif since 2000, but from 1998 - 2000, I was constantly ill with odd things, every 6 or 8 weeks or so.
I'm guessing that these were relapses.
Since Rebif, I've had 5 relapses in 10 years, one without Rebif, as I'd run out after moving to Spain.
I'm still RRMS. There's a theory that if you are still RRMS after this many years, then the MS may not progress and to be honest, it hasn't.

The injectible won't 'improve' the MS, but if you have RRMS it may slow down your relapse rate.
What I don't understand is, that the statistics are often quoted as a reason for whatever drug not being worth trying (only works in 30% of cases to cut relapses by 30%).
It's cut my relapse rate by more than 60% - possibly 80%.
I have never had bad side-effects. Again, lucky.

Saludos,
jg
Regime Rebif44, LDN, Vitamin D3, Omega 3 fish oils, Gluten/pulse free diet and exercise.
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Postby surfbird » Thu Sep 16, 2010 8:15 am

Wow, thanks everyone! This all just drives home the point that I can't tell what is going to happen and I have to do everything I can to prevent my MS from progressing...even if it's kind of a shot in the dark (or in my stomach :D ). Patientx, you are absolutely right in that I can always opt out later.

I'm glad there are even options for me to consider, as I know that there was a time in MS when the only solution was to..well, do nothing I suppose. Gotta keep my eyes on the bright side. I am really glad to hear some positive stories regarding these injectables. Thanks again.
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Postby patientx » Thu Sep 16, 2010 10:30 am

jgkarob wrote:What I don't understand is, that the statistics are often quoted as a reason for whatever drug not being worth trying (only works in 30% of cases to cut relapses by 30%).
It's cut my relapse rate by more than 60% - possibly 80%.

I brought this up to a neurologist, and he had a good point. That oft-quoted 30% reduction in relapses is the number averaged over all those patients receiving the medicine (as compared to those on placebo). For some people, the medicine didn't work as well, and they continued having relapses. But many showed far fewer relapses, much like yourself. The averaging would tend to hide this.
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Postby patientx » Thu Sep 16, 2010 10:35 am

Bubba wrote:Personally.... I decided on Rebif and I havent had any more relapses. Is it because of the Rebif? Dontknow. Natural progression? Dont know?

Or is it the six-pack of Budweiser every day?
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Postby Bubba » Thu Sep 16, 2010 5:00 pm

You may be on to something there X! :D
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Postby stillfighting » Thu Sep 16, 2010 7:38 pm

I will say I am not sure we can say if it's working or not. Now that sounds very confusing.

One thing you will know.. is if it's not.
SO.. if your doing well on it.. stick with it.MS is holding its on. No bad side effects. Then it probably is doing it's job for you.
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Postby Punchy » Tue Sep 21, 2010 9:06 am

If you can afford it and if you tolerate it well, why not? I can do neither.

Once you have progressive MS it may be too late, so do what you can now.
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Postby koopico » Fri Sep 24, 2010 10:19 am

I've been on Avonex since 2001--about three months after my dx--and I have at least three or four flare-ups a year. Very tough to know if it's EVER worked--would I have had more flare-ups with NO meds? Or would it be just the same? No way to know.

I'm looking for a new neuro, so I'll talk to whoever I end up with about switching to something else. And as much as I would hate the idea of doing an injection every day (even though I hate the intra-muscular injections weekly!)--I would. I have co-pay assistance (my cost after insurance would be $839 a month)--or I couldn't afford it, for sure. So I'd have to be able to get that for a new med. So we'll see!



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