Lunasin cost...

[CarolSue]

I am considering taking Lunasin. I went to their website and apparently they are a multi-level marketing company which kind of turned me off, but hey if it works, right?

I've done my searches on the forum on Lunasin and am probably more confused now than before. I asked the distributer about the cost and to quote me the monthly cost of the same that is given in the trial. They quoted $570 monthly. But I also read where someone was getting the same thing on Amazon for much cheaper. Can anyone advise me on where to get it and how much it costs?

Another thing, if anyone could please give me their opinion on this....I was injecting B-12 Methylcobalamin 25 mg daily for 3 months. Didn't notice any difference in progression one way or another. The only thing I noticed was the twitching slowed down while on it. I quit taking it about 6 weeks ago and the twitching has come back with a vengeance. Do you think the B-12 injections were doing more than I thought? Would you go back on the injections or try Lunasin?

I value all your opinions. Please help!

CarolSue

 

[diagnosed2016]

I've read costs anywhere from 400-750 so I am also confused as to the difference. I know for the lowest price you have to become a distributor but not sure what all that entails. I, too, wish it weren't mlm. It takes away from the legitimacy of it for me. My husband is on the b12 shots. He says he feels better when he takes them and has been on for 3 months. I have read that results were favorable with 6-12 months worth so he has decided to stay on it for that long at least

 

[KimT]

I found a distributor willing to give all PALS a 30% discount. I bought my first batch on e-Bay but will order from this lady if I can tolerate the protocol.

Mod note: please contact Kim directly (eg. PM) for this info

 

[azgirl]

First I would like to say that although I am one of the people on this forum Who are reporting positive changes since starting Lunasin, I am in no way trying to say it is a miracle treatment or cure. It is only in the trial stage, so there is no scientific evidence yet that it works. It seems and almost equal number of people trying it are not seeing a benefit, so like anything else with ALS, Who knows why or how it's working, or if the positive changes we are experiencing will hold.

I also was uncomfortable with the MLM nature of the product. But when Dr bedlack thought it was worthy of a trial I became interested. It is most expensive if you buy it from their website, slightly less expensive on Amazon, and cheaper if you buy from a distributor who is willing to give you a discount like kim said. I believe the distributor I used was the daughter of the one Kim stated. My cost the first month was $390, but she miss calculated the number of capsules needed. I paid $460 for the second month which seems to be the correct amount of product. If anyone wants to try it I would recommend following the protocol from the trial.

 

[gooseberry]

Drugs range in cost depending on what the margin is the company is trying to meet and profit for the middleman. Steve took a coiple meds that were 1000 dollars before insurance via cvs. Insurance said 200 dollars was our copay. VA gave him the same length script and pill count for 2.34...yes two dollars 34 cents. It is all about profit and negotiating power with pharmaceuticals

 

[azgirl]

Lunasin is a supplement, not covered by any insurance

 

[gooseberry]

I understood that�� but clinics may still prescribe a supplement. Steve was prescribed vitamin d for example...fish oil, etc. If you have a prescription, sometimes you can use fsa for it , possible tax write off, etc.

My point really was that prices are different wherever you go. It is worth checking around...kim gives some good info on how to reduce the cost.

 

[lgelb]

Steph, the difference w/ fish oil and Vit D is they have recognized medical indications for use (research-supported, mentioned in guidelines by professional associations, listed on formularies). Lunasin, not so much.

CarolSue, B12 has a longer track record on benefit vs. risk and the only way to know if is helping is to renew it. So if the twitching keeps you from things or bothers you a lot, I'd try B12 again ahead of Lunasin, if you have to choose.

Best,
Laurie

 

[KimT]

Any time your doctor prescribes (or agrees that you should be taking a supplement) get them to write it on an Rx. It will then be tax deductible (subject to total medical expenses exceeding 10% of your AGI.) Keep records of all medical expenses (including mileage to and from doctors) because out-of-pocket expenses add up.

My service dog has many expenses (food, vet appointments, health insurance premiums, etc.) Because I have an Rx of medical necessity to have a (service) dog, ALL his expenses are deductible....including food.)

 

[CarolSue]

Thanks for all the responses...Laurie, I'm really torn between the two. I can do one or the other but doubt I would do both at the same time. That would be a little costly.

I think I will take your advice and go back to the B-12 at least for a while and see what the twitching does. I was at the ALS Clinic last Monday and the Neuro there thought it was a coincidence that the twitching amped up when I quit the shots. I'm not so sure.

The Lunasin is tempting because of the possibility of it reversing at least some function. I'm still on my feet, but balance is gone and I have to wear my braces or risk another fall/ER visit/sprained foot. I am lucky that was all the damage I had. Right hand is affected and progressing. If I can slow it down like everyone else hopes for that would be prayers answered.

I will order my b-12 again and try another month and see what happens, then go from there.

Another one that I've looked at is Tudca...anyone have any experience with it??

Love to all,
CarolSue

 

[Duker52]

CarolSue, I'm taking TUDCA. I started off gradually and am now up to the four capsules a day. It hasn't been long enough yet for me to notice any improvements. I was taking Lunasin, but the shakes were so filling I couldn't eat anything else during the day. I started losing weight so stopped taking it. My fingers are crossed for the TUDCA. Bill

 

[KimT]

I was able to upload the web site of the dealer who would give PALS 30% off. If you are on Facebook, you can go to The ALS Project (look for the picture of the flowers) or Kim Belden Titus and there is a link from my page to the ALS Project.

Please join The ALS Project group on FB. The document is uploaded there and there have been a few changes.

 

[KimT]

No....I don't get a commission and I have no intention of being a distributor.

 

[KimT]

Unfortunately, I couldn't tolerate Tudca. It aggravated my acid reflux so much I was afraid of aspirating in the night.