I don't get it

[Red7172]

I am confused and I have a few questions.
My doc told me I was progressive (didn't say anything more then progressive). I just had another MRI about a month ago or so and he decided that copaxone was not doing anything and he told me I had to switch.

I don't understand what he means to switch sense --to my knowledge--there isn't anything that is approved for any progressive ms.

I am on medicare and most part d plans in Calif do not cover any of the meds he suggestted (gilenya, extavia, rebif)

I just really had to say this out loud more then anything. (Family and BF are not understanding what I say when I tell them I am just gonna finish my copaxone and then I am done with dmd)

[jbell2435]

I just got diagnosed with PPMS 4 wks ago and they started me on Ampyra right away. I've been on it for only a week or so, but I clocked 2 sec better on a 25 ft walk last week, not great but better than I was. Problem is they don't know if it was the med or better shoes... Luckily I have PPO insurance and it was covered under my plan as it is very expensive. It was FDA approved 1/2010 and drs are hoping it might slow progression and help with walking. I have foot drop as well.

[Redwings]

I'm sorry that your doctor couldn't be more helpful. When there aren't any solid solutions, "switch" might be as helpful as he could be, with "switch" meaning that maybe it's better to be on something than on nothing.

Gilenya is said to have a particular characteristic about the way it works that might make it beneficial with progressive forms of MS (don't ask me the details of what that is ). It's currently in clinical trials for PPMS.

If you're interested in Gilenya -- and willing to accept the risks of the drug in exchange for the benefits it might supply -- you can contact the manufacturer and see if they can help you with their patient assistance program: http://www.gilenya.com/info/support/...go-program.jsp Although most of the Part D plans in California don't cover Gilenya, their advisers might be able to help to find one that does.

[Seasha]

I just really had to say this out loud more then anything. (Family and BF are not understanding what I say when I tell them I am just gonna finish my copaxone and then I am done with dmd)

Hi Red, I was on copaxone for quite a few years and when I was told that the MS had progressed to SP, I did what you are thinking of doing. I finished it off and was done with any DMD. My neuro said they weren't helping me anymore. I didn't take anything for a year until Ampyra was FDA approved. I feel good about being on it. My walking hasn't significantly improved, but I don't feel as fatigued and my brain fog is easing up

I'm sorry that you family isn't all that understanding, but You know, it's ultimately up to you. Wishing you well on you decisions!!

[Redwings]

It was FDA approved 1/2010 and drs are hoping it might slow progression and help with walking.

Doctors who are hoping that Ampyra might slow the progression of MS are scientifically misinformed and unrealistically optimistic. Ampyra is not a DMD, and it has no characteristics that can affect the progression of the underlying disease.

Ampyra is a good suggestion for symptomatic relief, though.

[jbell2435]

Ah, well that bursts that bubble. I guess I can hope for better walking then, which would be welcome anytime. Thanks.

[Red7172]

Thanks all

You all were helpful. I think I'll call the people at Gilenya to see what they have to say. (That seems to be the drug of choice ...LOL)

I don't know what I would do without this board.--everyone is very helpful in calming me down.

[onlyairfare]

Although the FDA might approve a drug only for a specific purpose or disease (DMD's for RRMS for example), doctors can prescribe it for other reasons if they think it will be helpful. Sometimes there is research showing that a drug will likely help, but not enough to prove that to the FDA - which is a very expensive process. So the "approved indications" list may be pretty small, even though a drug may be useful for other diseases.

Insurers limit their coverage (what they pay for) for two reasons -1) patient safety, as a drug may have bad side effects and should only be used when the benefit outweighs the risk; and 2) because they want to reduce expenses, so if they can find a reason not to cover an expensive prescription, they will do so to save money.

If Gilenya might help you and your insurance won't cover it but you would like to try it, I hope you can get it through the Gilenya patient assistance program.

[inmoni5]

What about LDN????

You cannot say there is nothing for progressive forms of MS. You just have to "think outside the box". You have to find a doc that will think that way too.

There are options for us progressive individuals.

LDN has been shown to slow progression of ms.

Everyone has to be their own advocate in their treatment. You have to research other treatment options that your doc doesn't disclose to you.

Not saying LDN will help every individual...but....for many it has helped. It's a slow progress but it does help.