Copaxone

[LisaJF]

Well, my new Neurologist was sitting on the fence with the MS diagnosis (probable) -- until the rectal spasms, bladder spasms, paresthesia in both legs (since January 11 - 24/7, everyday until today but still hopeful that they will go away), fecal incontinence x 5 (short bout of it but it hasn't happened again thank god, and a crossed knee adductor response (wtf is that) he finally hopped off the fence and gave me the definitive diagnosis of MS.

He called shared solutions and filled out the paperwork for Copaxone 40mg injectables.  Unfortunately, my medicaid health insurance denied the order (3x's a week) and approved of the Copaxone 20mg daily injections. They told me yesterday after a year to see the response and if it meets their requirements, they will allow me to move to the 3 x's a week (40mg Copaxone).  How nice of them.

So my question is, anyone on the daily injections?  How is it?

PS - I did receive my autoinject "2" (at least that is what it says on the box. Looks like a cheap plastic thing let me tell you.

Lisa

[LisaJF]

I told him a month after using the Neurontin, that the "buzzing" intensity went from a "10" level to a "2-3" level, which was acceptable for me.  But then last month it started to increase in intensity so I asked if I could go higher and that was his response.  I know the dosage can go up to 3600mg/day and I thought one more 300mg = 1200mg/day wouldnt be asking for much.  

He had a hard time giving me zanaflex prescription for muscle spasms.  Then wrote the order for less than what I used to take.  

Could he be wrong about my diagnosis? Could be -- I wonder that myself at times, but then I can't think what else it could be.

@Kelly:  I got the autoinjector 2 weeks ago and yet to receive the copaxone.  I will  have a RN come out and teach me, since I have not been practicing as a nurse for four years. One thing to deliver it, its another giving it to myself. LOL.

I'll let you know :)

Thanks again everyone

Lisa

[anon07072023]

Let us know how it goes. I guess they'll probably send someone out to teach you how to use the auto injector or are you going to just do the straight needles by yourself without the injector?

[essdipity]

Hi, Lisa.

Just want to say that 900 mg/day is NOT a high dose. The max is 3600, and I'm on a total of 2700, which cuts down on things but doesn't eliminate them.

I'm wondering whether this neuro is really knowledgeable. Since he is totally wrong about Neurontin (feel free to Google), what else is he wrong about?

So many people are on inadequate doses of this med, which they then abandon, thinking it doesn't help. There are those who react well to the lower levels or who are very sensitive to this and other meds, but there are also those who need very high dosages. Everyone is different.

In any case, slow tapering on and off is essential.

ess

[LisaJF]

THank you everyone for responding. LOL.

A delayed grateful response huh? I had to go a few pages back. I was like, "Where is it?" I found it.

@Dagun:  Yes he initially said MS and was talking of different drugs of what he DIDNT like versus what he thought was safe and effective.  Then the next visit he practically retracted his diagnosis and the visit after he went back to it.  

@Laura/LuLu:

Even when I got the diagnosis, I again question if I do or don't.  It's either denial or afraid that I pushed the Neuro too hard? I don't know.  

All I do know, is that my symptoms have been going on since 2010.  I continue to have the paresthesias in both my feet and sometimes entire legs since Jan 11th (every day 24/7).  I do hope that will eventually go away.

I am on Neurontin for it, but it only calmed the buzzing and its still there. I can tell when the Neurontin is wearing off because the buzzing intensity increases a two fold.  I asked my Neuro if I could increase my dose (on 900mg/day) and he said I'm on a high dose already.....

Anyways, Finally TEVA called the CareMed Pharmacy along with my Neurologist on line and gave a verbal order on Friday.  My Neuro sent me the script for Copaxone..which TEVA stated that its useless so they called my Neuro then did a 3 way convo with the pharmacy.  

Teva said I should be getting it on Monday (today which is Memorial day...highly doubt it) and I have not heard from Caremed at all.

Lisa

[Dagun]

Yes it sure is great that the neuro fell off his fence and saw the light, finally! But he did diagnose you some weeks ago, didn´t he? I thought I remembered being so happy for you finally having answers.

But at least you have some medication now and hopefully this amount of Copaxone will help. This insurance system in the USA is faulted.

My best wishes,
Dagun

[Lulu54]

Woo hoo!!! You have MS!!!  oh, sorry, that does sound celebratory, doesn't it?   I am just so happy this doctor finally got off the fence and called it - you have suffered and waited long enough.

Stinky for the insurance company to not approve the three times weekly dosing - it has been proven and for right now it is absolutely the same cost as the daily copaxone.  TEVA set it up that way to be able to switch patients to the new dosing - too bad your insurance balks at that and perhaps your neurologist needs to be more assertive.

Seriously,
i am sorry you have MS but we figured that for quite some time.  Now with the treatment you should find a way to be out among your photo subjects and not suffer so badly.   Welcome to the club no one wants to belong to.
hugs, Laura

[babybear2200]

Im happy for you to finally have a definitive name. I don't know about you, but not being able to name what was wrong with me was far worse than learning the name. I've had my moments lately, as I'm sure we all have, but all in all I feel much better knowing. It is like knowing for sure allowed me to switch from it defining me to now its just a small part of who I am; what makes me Me. I can't answer your questions as I will be starting Rebif soon but I wish you the best of luck with your DMD. :)

Kelly, thanks for the tip! I have read Rebif has the same injection site issues.  

[anon07072023]

I'm glad that you finally have a definitive diagnosis Lisa. :-)  It seems like it took a long time.  

The injections sting a lot afterwards and with me will leave large swollen areas. I heat up my skin first, then I inject, then I put ice on the injection spot.
Hugs!

[HVAC]

I did not have any problem with the once a day. It stung for a few minutes but I did it before bed and would be watching television to distract me.

Alex