Hi
IT is SCARY isnt it! I havent had the same experience with Copaxone, however I have not long started Gilenya, and the doc told me to take it every 2nd day due to side effects.

I thought long and hard about it, and in the end decided that I am not doing ANY treatment for the fun of it, I am doing it to get well. To me, if studies showed that Gilenya could be taken at half dose, or in your case copaxone could be taken at 3 times a week, would we have not done this from the start???? Sure as hell would have been easier!!!!

I am not telling you not to do what doc said, however maybe you could do some research yourself and see if it is common practice that when things are stable you reduce dose. Perhaps this has been studied.

One thing that I have learnt on this short journey I have had with MS is that sometimes you need to do your own homework, and use it as a guide. Ultimately, your doctor knows best, but it does not hurt doing some research into it yourself.

Sorry I havent been much help with your specific question!!

Take Care of You
Michelle

Maybe you could call Shared Solutions and see if this is an approved practice 1-800-887-8100. If they say no, I might have to think twice.

I don't know that I would be comfortable with it but I wouldn't rely on shared solutions to tell you it's ok to take less of their high dollar medicine either! Shared solutions won't even fess up to the few side effects that copaxone has! The nurse last week tried to tell me that she couldn't find anywhere that weight gain could be a side effect even though I've gained 20 lbs in the last 6 months since I've been on it even though I have been doing cardio every single day beginning 6 months ago. Not to mention the fact that weight gain is also now listed on my side effects warnings from the pharmacy for the last 2 months (wasn't on there before). So how shared solutions would not be aware of listed side effects I find to be odd! If your dr has experience with other patients reducing their dosage and no new activity I might consider it for awhile as long as I got frequent MRIs to check for progress

I hope you have better luck on the 3 days a week than I did. My doc gave me the option of continuing with Copaxone (been on it nearly 10 years) or stopping it and seeing what happens. I tried titering it down and I def saw a difference (don't know if it was fear based or real) but since I already look like the human pin cushion, marshmellow woman (from the site injection marks and bruising and puffiness) but can still walk and talk with mostly GI side effects from the damned disease, I decided to stay with it, at least for now. My guess is you can try it and see what happens. They are coming out with a double strength Copaxone to be taken every other day so maybe he/she is readying you for that? Good luck and may you NOT experience the lipo crap that I have had but then again it has been 10 years and I am truly running out of real estate so I am praying for something in its place!

Hi everyone,

Thanks for the feedback. Somethings to note. I have been doing my research to see how often this 3 day regimen is being uses and what type of results are seen. Unfortunately I have not found much other than what I get from my nuero. He is an MS specialist who has been in practice for more than 20 years with most of that time specializing in MS.

When calling Share Solutions their view is that the drug is to be taken daily. Of course I would not expect them to say anything different. They have a vesting interest in having patients stay on a daily path.



I feel okay about my nuero's recommending a different regimen, I like the fact that he is willing to "think out of the box" and try different thing. I don't want to risk having issues, but know I can always go back to daily if it I see big issues. I just would like to hear from others what their experiences have been.

I believe that Copaxone has a 72 hour half life, so 3x a week would keep the levels in your body consistent.

Since you've been on Copaxone for over a year, it has had enough time fully cross the Blood-Brain barrier and it is at it's full effectiveness.

I would say try it. If you have any issues you can always go back to daily, but wouldn't the break be nice? I am sure your neuro will be monitoring you more closely at the lower dosage.

I am currently on Betaseron and I'm REALLY REALLY bad about remembering to take my shot every other day but as long as I keep the serum level up in my body I think I am fine. I will often forget 2 days in a row and then take the next. I have not had a relapse since December.

I went off Copaxone several months ago. I kept getting softball sized welts that were nasty red and hot, sometimes itchy. They would last literally 4 days or more. It was terrible. However we don't know if it was the drug itself OR quite possibly the tainted alcohol wipes that were shipped out at the time. I had those in my shipments. I was not brave enough at the time to try it again. I did not mind the auto inject at all. I guess rotating andhaving to remember where to stick next is a pain in the ass fo rme, but I just have to focus on keeping it straight.
I switched to steriod IV treatment one day every 3 months as Im truely feeling fine and have nothing showing on my MRI's. It sometimes bothers me that Im not on anything, necessarily. Not a regular treatment by the more traditional sense. I do feel I h ave my life back too, even more than when I was on Avonex, which is what I started on when I was 1st DX'd.
I do wonder though, should I risk my health withthe steriods? They can be very damaging, and how long will I feel this good? Where do I turn if I relapse?
I think I'll talk to my doctor when I go back ina month or so about returnig to Copaxone, on an every other day or 3 day a week schedule. Ive read some, and they really do think that this is sufficient for treatment.
Thanks for reminding me of this. I guess Im one to forget those things when I feel great. And Im very lucky to feel as good as I do.

hello
I am not or have ever been on copaxone or any other crabs. But I have thought about going on copaxone and did ask my neuro if I could do 3 days a week and he was willing to give it a go. So I would do it if I were in your shoes. good luck

Hi all,

Well I am 2 weeks into my "3 day a week" trial. So far I have had no issues. I must say I am really enjoying not having to do injections every day. I am really early in this and having more 3 day weeks will give the best information. I will keep everyone posted.

They are testing a 3 day injection cycle but it's the same injection size just a stronger dose if that makes sense. From what I have been told it takes 48 hours for all traces of Copaxone to leave your body. That's why it is a daily shot to keep the same amount in your system all the time. Would stick with the on label dosing but that's just me. If you start playing around with it then you risk not being fully protected.

CWCRAWFORD,

I understand and thank you for the concern.

Both my nuero and I are aware of the testing that is being done with the higher dose. Since I have been stable this is a direction we decided to try. My nuero is an MS specialist and works very closely with the drug companies. He has taken this approach with many of his patients and has seen great results.

The great thing here is I can go back to daily injections at any point I feel I need to do so. So that plus my relationship with the nuero is of what makes me ok with the risk.

I just saw a new neuro for second time recently. She is an MS specialist and unlike my last one newly trained, up to date and thinks outside of the box. She has recommended copaxone 3 times a week because it has neuro-protective properties without side effects. I am in the secondary progressive phase - I can't walk, Not RRMS, so this is "off label" use. I am going to try it. I would suggest you ask your neuro WHY he/she is recommending 3 times a week.

If you decide to do less be sure you get a follow-up MRI fairly soon after (3-6 months) to be sure nothing new is happening. You can't be too careful. I have been researching this 3x a week idea and so far haven't found anything. I am doing 1month IV sterois too (first time).

Best of luck with this

Melanie