Copaxone to LDN has anyone tried that?

[farmwife]

With the rising cost of the copaxone I often want to switch to LDN it since it is cheaper. I am feeling well with the copaxone but am alway worried about that ceiling on the insurance.

Has anyone tried it and had trouble. I feel like maybe I rushed into a treatment with out checking my options.


Farmwife

[lady_express_44]

What about cutting Copaxone in 1/2 and adding LDN? There are few small studies that indicate Copaxone is equally effective every second day anyway, and that would cut your costs in 1/2.

Then, if you find LDN helps you considerably, or if it is keeping you stable, drop the Copaxone (IF YOU CHOOSE at that time).

LDN does have some minor side-effects, but most people now-a-days start out at 1/3 the "normal" dosage for MS, @ 1.5mg. Most do not experience much at all in the way of side-effects at that dosage . . . but if you do, we can walk you through them.

If you order it from Skip's, very few people have problems from allergens due to fillers, etc. He's got the best "recipe" worked out, and it does need to be compounded correctly.

Cherie

[calcal]

With the rising cost of the copaxone I often want to switch to LDN it since it is cheaper. I am feeling well with the copaxone but am alway worried about that ceiling on the insurance.

Has anyone tried it and had trouble. I feel like maybe I rushed into a treatment with out checking my options.


Farmwife

If you are stable on copaxone, I would not stop taking it or reduce the dose. MS is a CHRONIC PROGRESSIVE illness that causes PERMANENT disabilities. Sometimes I think we forget that if we are doing well and are stable. But all it takes is 1 lesion in the wrong place to completely change your disability level and abilities. All it takes is removing what is keeping you stable to start a downward spiral that wreaks havoc with your life and health.

So if what you are doing is keeping you stable, I wouldn't change a thing.

Best to keep unproven treatments as a "last resort" for when medicines with evidence-based trial results of efficacy behind them fail to work.

I wouldn't change a thing if you are stable on it.

[gonnamakeit]

With the rising cost of the copaxone I often want to switch to LDN it since it is cheaper. I am feeling well with the copaxone but am alway worried about that ceiling on the insurance.

Has anyone tried it and had trouble. I feel like maybe I rushed into a treatment with out checking my options.


Farmwife

Another option for you is to check out whether you could get lower cost/no cost Copaxone if you can no longer afford it through your insurance. I don't know the resources for this info, but have seen others post links for the numbers to call.

gmi

[fahrmar]

With the rising cost of the copaxone I often want to switch to LDN it since it is cheaper. I am feeling well with the copaxone but am alway worried about that ceiling on the insurance.

Has anyone tried it and had trouble. I feel like maybe I rushed into a treatment with out checking my options.


Farmwife

I have financial assistance from the Chronic Disease Fund (Texas). They're contact info is on the Copaxone website, but I also found the contact info with a web search. I have a co-pay $20. Wothout CDF, it'd be almost $400.

And yes, LDN is being prescribed for people who are on Copaxone. There's an MS specialist about 90 miles from here who does so. My neuro is finally considering LDN for me, along with my Copaxone.

I'm sorry I don't have the contact info for CDF, but it's easy to find.

Good Luck!!!

*butterfly2

[farmwife]

I have gotten help from the CDF, I see that my insurance co is billed 2336.00 a month for my copaxone it is blue cross and I would think my insurance company should me making a deal to get some sort of discount price. I go through caremark and I was talking to another ms person on copaxone and she claims her company is only billed 1100.00 a month and her copaxone has gone down in price. Does any of this sound correct.


Famwife

[fahrmar]

I have gotten help from the CDF, I see that my insurance co is billed 2336.00 a month for my copaxone it is blue cross and I would think my insurance company should me making a deal to get some sort of discount price. I go through caremark and I was talking to another ms person on copaxone and she claims her company is only billed 1100.00 a month and her copaxone has gone down in price. Does any of this sound correct.


Famwife

I deal with Caremark, too, and am frequently frustrated by them. They lost a new prescription that I mailed in last month. I can't figure out how they price it. My bill said $4,000 something and then underneath that $1100 and change. That's two very different prices on the same invoice for one month of C, with no explanation why, only that the "patient" owes nothing.

Every single time I call for my monthly refill, I kid you not, they cannot find me in their computer system. I truly do not exagerate, every single time. That's faith building!

*ack

[farmwife]

I can not say I have had a problem with orders or delivery, I have had very ggod service. I just think that since I used the CDF the price seems to have taken a jump. The cdf people have left a messege on my machine to return a call but I do not know what to think. Something seems fishy to me.

I may call Blue Cross and check to see if another pharmacy could take over.


Farmwife

[kthkap]

I cannot afford to pay for Copaxone after I pay my health insurance premium. Let me know if you are able to get another pharmacy - I tried and was unsuccessful. BTW my monthly copaxone bill was $1600.

[Aiko]

I'll second what Cherie has suggested, only because that's what I'm currently doing :) which is taking C every other day (not for financial reasons but literally to save my bumpy and puckered hide after almost 9 years of injecting C)...

I added LDN to my regimen in early February. Its medical mechanism is completely different from C so I feel they complement each other.

At first, my neuro was dismissive of prescribing LDN but I gave him the information and online links to LDN clinical studies (one of which was done locally at UCSF MS Center), and he then added it to my prescription list.

The reason more clinical studies have not been done on LDN is that there is no profit motive for big pharma because Naltrexone is already available in generic form - there's no one to pay for the trials. The UCSF small-scale study trial was paid for by MS patients taking LDN who raised $30,000 to pay for the study themselves.

in wellness

Aiko