In need of some help

[lightnin77]

I live in Georgia (USA) I just found out that the cost of my medication "Baclofen " has gone from $400 every 3 months to 2000+ every 3 months. I know alot of you out there are overseas but can anyone tell me some of the other drugs that they have found to work well for the spasticity associated with AMN. I was diagnosed in 2006 and currently take Baclofen for the spasticity and Neurontin for the neuropathy in my lower extremities. I don't know what to do where to turn. I really don't need this stress UGH!!!!!

[ashleyt]

Hi Lightnin77,

Disclaimer: always listen to your doctor and bring any research and questions to his/her attention first before changing anything. I'm not a health professional.

I'm not sure if this would help, but some of the people I've spoken to along with my husband all say that Baclofen doesn't work well enough to continually take it. It might help your wallet, but you'd need to find something else to take its place and actually work.

My husband has stopped taking anything for the spasticity because he felt it was a let down; he'd have it really badly and hope the medication would work and it wouldn't. It didn't even have a placebo effect for him. Sometimes he'd feel it would take care of the spasticity and then find that he was less aware of his legs' movements which we both think is more dangerous (he's more prone to falling in that case). I'm not sure if other people have felt that it works more than his, but for Ben, my husband, it didn't work at all.

I strongly urge you to consult with your doctor and explain the situation. Luckily in the UK we have NHS and don't have to pay such high prices. However, it's absurd to pay $8000/year just to keep your pain at bay.

If Baclofen works for you then I strongly urge you to stay on it! I'm keen to see what other medications people take as Ben is yet to find an alternative.

[bozzer]

Hi there. I have AMN too and don't take baclofen nor I think do many uk patients so might be worth reconsidering using it at all. I don't think in the uk we take anything for the spactisity. We focus on hydrocortisone for the adrenal insufficiency or bladder treatments. Happy to be corrected of course but I speak on behalf of the some uk patients because I have been part of several AMN focus groups where we go from head to toe looking at what people take. You might want to try ampyra aka frampyra. We can't get this in the uk but US patients can. It is good for boosting your mobility. Hope this helps. Mark

[COwithAMN Administrator AMN EASIER Volunteer]

I can sympathise with your desire to find a good anti-spasticity drug. I tried Baclofen a few years ago but it had no effect. I believe I also tried Tizanadine.

I will create two polls about spasticity and the drugs we have used to try and get some view of how effective they are.

Before I do this I need to build a list of the drugs. I know about these:

Baclofen

Tizanadine

Fampyra

Can anyone reading this post the names of the drugs they know about or are using. Some may be under different brand names but I can sort that out later.

Best wishes

Chris

[alsrgnt]

Hi there,

Greeting from Charleston, SC! I take 2,100mg of Neurontin and 4mg of Tizanadine for my AMN spasticity and it's AMAZING. I've been on Baclofen before, but stopped taking it because my mom also took it and permanently lost her sense of taste. Bummer. I think you can have the same effect with Neurontin as you've had with Baclofen.

[Catherine62]

Hey! I'm in Charlotte. What you've been paying for baclofen until now seems criminal--it's a generic drug! If baclofen works for you, you might want to look into canadadrugs.com. My neurologist showed it to me, so I know doctors are aware of it and assisting patients in obtaining the drugs that they carry at a substantial price reduction.

[mikewithers]

hello sir. I ws diagnosed with AMN 10 years ago. I found out about baclofen and tried it with no luck, it did nothing for me. I'm 40 now & stil walking and have a few other symptoms. If you want to know more please email [e-mail]

[lightnin77]

Thank you all for your replies. I was able to locate my Baclofen at Target Pharmacy of all places that was at my usual copay of $30 for 90 days worth. We'll see if that continues after the next three months. I also talked to my Neurologist and I am on an extremely low dose of Baclofen. It works great for me but I am also trying 4-aminopyridine aka Ampyra. I am lucky to have a compounding pharmacy here in my town that has been compounding this drug for the last 8 yrs for someone else. The cost is $75 a month for 1 pill twice a day but that is better than 2000 for Ampyra which I can't get because the FDA only approves it for MS. I will be starting the new compound Nov. 1st I'll keep y'all notified of my experience.