Medication Dosages and CRABS . . .
 

We all talk about our tolerances for medications and different types and dosages. I have been wondering about this for quite some time now and even have been a bad girl sometimes with my C.

I cannot tolerate baclofen and valium even at the lowest recommended dose. It is far too much for me. I am on an extremely low dose of Neurontin and there is question about the dosage (lowest dose) of Celexa that I am on for the time being.

Knowing how sensitive I am to meds, I have often wondered if the dosage of the C is too high for me and if the dosage of any of CRABs is too low or too high for others. They have a set dosage and that's it. It is not like other meds that you can go up/down in dosage to obtain the correct dosage for YOU. But I wonder if coming up with the correct dosage based on you would be more beneficial and lessen the nasty side effects. (Just a thought here.)

I go through periods of feeling like there is something "toxic" in my body. It is during those times that I don't take a full shot of C. I do 1/2 shot for a week and start feeling better. I've been doing this for quite some time now and have had no changes on my brain MRI in over 2 years. So there is no progression at all in the disease process. (Mind you, I do have spinal lesions but they rarely ever do MRIs on my spine so I don't know if there are changes and have had a few spinal lesion flares during the past 2 years).

So this morning I thought I would just throw this out there for discussion purposes and see what you all thought.

I think that is an interesting point. Definitely think it might be benefical for research to look into the dose adjustments since we're all a little different.

An example would be the neurotin. I take one 300mg pill in the morning to help with my "zaps". I can take up to 2 more pills during the day if they get out of hand. Neuro agrees as long as I take the one pill so the body stays used to the med, it's cool.

I just did a copaxone holiday, but before hand I was feeling saturated with it. I felt like it was coming out every pore in my body. I would take another shot, and I swear, it was just like if I was a lemon and you squeezed me, I would squirt copaxone.

It is supposed to be something our bodies make already (4 amino acids) with a sugar or mannitol base to it. I too have considered either every other day or half shots. When I spoke to the MD about feeling saturated he gave me the "pirate look" you know, when they lean their head to one side, one eye squinted, and and corner of their mouth draws up? that "what are you talking about face." He said he had never heard that complaint before. He would start asking others, and on my next check up we would discuss it again.

Nice to know I am not alone. btw, I too am sensitive to drugs.

LOL Very good description.

Absolutely......the CRABS cannot be a "one size fits all" medication. I believe you should listen to your body and do what feels right for you. Just because one person is on a full dose doesn't necessarily mean that dosage is right for everyone. If it feels bad, tweak it till it feels better. If a full dose gives you terrible sx then lower the dose until the sx are tolerable. MS is bad enough without the medications causing more problems.

Even with something as minute as LDN, people have differences in efficacy and tolerance. It really stands to reason that they would with most any drug.

However, the problem is that these drugs don't really have a way to measure their effectiveness. If a person dropped to 1/2, how would they know if this had a negative impact on efficacy?

Copaxone has undergone 2 small studies at 1/2 dosage, and was proven equally effective ... and Rebif is basically just twice the dosage of Avonex, with statistically EQUAL efficacy rates. It wouldn't surprise me if 1/4 or 2 times the dosage would give a similar efficacy rates, to be honest.

It's always just a crap shoot, isn't it?

Cherie

I've been wondering about dosage, frequency, etc. for Copaxone but can't really find any info except from the manufacturer, and opinions on message boards.

The only "advice" I've gotten from my neuro is, "Well, I wouldn't skip any."

Or WHAT?? If I skip a day or a week, does it evaporate from my system and I have to start over? If I shoot six times a week instead of five, will it totally negate the benefit of it?

It's very frustrating to give myself a shot every day with the philosophy of "can't hurt, might help" when it might not even be true. *sigh*

I'd also like to know more about who decided the one-size-fits-all dosage, how that was determined. Thanks for starting this thread.

Of course the manufacturer is going to advise you to take a full dose. The more you use the more you have to refill!

Like Cherie said.......it's just a crap shoot. It might work. It might not. I just got tired of being a guinea pig for big pharma. :rolleyes:

Great comment B2Y. Who does determine this? And is there a way they can test to make sure you are at YOUR optimal dose. I would think something would show in your blood work chemistry.

Cherie - Thanks for your post. I haven't heard about those small studies that were done. Do you have a link of where you read this or saw this? I have a neuro appt in a couple of weeks and may bring that up. It would be great if I could share the small study results with her.

Good post, my twin sistah of a different mother!

I'm on the other side of the coin, with a very high tolerance for side effects and that stuff. I had lots of practice in my younger years with recreational "pursuits". For the most part, I don't have side effects. I watch for them, but nothing happens-USUALLY!

I cannot take flexeril. It leaves me drooling on the couch even at a very low dose, not that that side effect is a bad thing at certain times, like when you have been struggling with pain and agony for a lengthy period of time. I just don't want to be that way every time I take a pill. I have none of the reactions that others report with baclofen. I never did. I even questioned whether it was working, until the first time I tried to skip it completely. It works, and works well for me when I need it to.

The drug companies use a dose that has proved to work well across the spectrum of patients trialed. It does not mean it's the correct dose for everyone and there will always be people with a more noted reaction than others. I think I am just lucky that I am at the tolerant end.