PLS and Riluzole

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morleyde

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DX UMND/PLS
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I have PLS and have not been prescribed Riluzole.
I have been to Mayo and currently go to the ALS Clinic at the VA in STL, and none have mentioned that I should take it.
I vaguely remember asking ( I think it was at Mayo) if any of the ALS drugs would help me, and they said no.
Just my experience.
 

Clearwater AL

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Riluzole is expensive, with out insurance it is $1200.00 dollars a month, those
with weak insurance coverage the co-pay can be $200.00 dollars a month.

Riluzole, the only FDA approved drug for ALS, which provides a modest increase
in survival of about 3 months, has not shown any clear benefit in patients with PLS.
For spasticity first line oral agents would include baclofen, tizanidine, or valium.

As Old Dog first said, " I said no, because of the cost and that I had read the
benefit was very limited."

In a previous post Riluzole was found to be 38%. That's still an opinion and
hopefully not a promoter of the drug. Ok, let's give compromise... 30%.
That isn't a overwhelming consideration giving to the side effects not
spoken of too often. The side effects for those of us with ALS might be
bearable to slow it down.

What paper... again?

People diagnosed with PLS that does not morph to ALS will most likely
die of other illness. PLS doesn't help their situation but it won't be on
the death certificate for cause of death. If someone dies directly related
to PLS I believe it was a long (years) term cause of attrition.

To quote Dr. Bedlack...

"PoV, it's even more likely that riluzole will be prescribed in these variants
in future."

Key words for now... "likely" and "in the future". Not yet so far.

Finally from Dr. Bedlack...

"Dr. Bedlack co-authored a paper last year suggesting with all the accumulating
evidence, that "PLS" and "PMA" simply be considered UMN-dominant and
LMN-dominant forms of ALS."

Again, key words... "suggesting" and "be considered." Far from done.

"Dr. Bedlack says a lot of things to keep himself in the loop." That was said to
me from my Neurologist when I mentioned things I had read following Dr. B.
He also said several very notable Neurologists declined to attend a conference
Dr. Bedlack was trying to organize.

Ok, it is good that Dr. Bedlack is so dedicated to ALS. He keeps ALS in the news.
 

Nikki J

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If anyone is paying 1200 a month for riluzole (60 tabs usual dose) they are getting ripped off pure and simple. I just looked on goodrx. Less than 50 dollars Goodrx does work I ran out once due to an insurance mixup and got it at walmart for the coupon price.
my insurance gives me 3 months at a time. The cost to me and them together is about 177 for 60 pills

the research that says slows by 38 percent. This was multiple studies according to Professor Al- Chalabi whose credentials are impeccable and MGH said the same. I adked mgh because it was new information. I did not require the doctor to give me documentation. I believed her. I trusted Dr Al Chalabi too - I just wondered if he misspoke

if anyone gets med side effects to any med they need to consider risk/ benefit and with their doctors decide. Many of us take riluzole with no problems.

you were the one that brought up Bedlack Al Since you seemed to be presenting him as an authority Laurie quoted him.
 

frankb

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thanks, old dog. i have often wondered if there was a pals out there in my age group. when dr glass confirmed my diagnosis back in 2010 he said that i was a little long in the tooth for als. i started riluzole a couple of months later and have continued up to this point. still have my voice but arms/hands/feet are fairly useless. legs were fairly ok until my last fall (down a flight of stairs) and since that time have been either in bed or in my power chair. - - as a matter of fact, with each 5 or so falls it seemed my body in some way or another would become weaker. to sum up my experience with als i do believe riluzole has helped me in this journey. hang in there old dog, and and as they would say 20 or 30 or perhaps 40years ago, keep on trucking!
 

old dog

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Thank you, Frank B. I fully intend to "Keep on truckin" for as long as I can. And the same to you!

I'm very glad to hear the price of Riluzole has come down so it's affordable for PALS.

I do a lot of typing (slowly) so I've retained some dexterity in my hands and fingers, although I'm beginning to have trouble handling paper. I'm planning to quit my part-time bookkeeping job when I finish the year-end reports because of this problem.
 

affected

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good to see you posting old dog 😊
 

Clearwater AL

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Thanks for the replies. I hope I brought some discussion to the
Forum in the sub-forums other than the dominate...
"Could this be ALS" forum."

I'm glad the price of Riluzole has come from what it once was
for others. My meds come from the VA.

I was hoping to get more input from our PLS members but
maybe in time.

In a previous post Riluzole was found to be 38%. That's still an
opinion and hopefully not a promoter of the drug. Ok, let's give
compromise... 30%.

30% ain't no great percentage. That leaves 70%. Again, if it is
beneficial to to those with PLS... I'm all for it.

But, as Morleyde posted...

"I have PLS and have not been prescribed Riluzole. I have been to Mayo and
currently go to the ALS Clinic at the VA in STL, and none have mentioned that
I should take it. I vaguely remember asking ( I think it was at Mayo) if any of
.the ALS drugs would help me, and they said no. Just my experience."

It has helped FrankB who has ALS as we do.

Old Dog... I too have typing difficulty. With my left hand now I only can use it
to do upper and lower case. I have to hunt and pick with my right hand.
Often I compose on Word first then paste here. Again.

ShiftKicker, you're PLS... what is your thoughts to the conversation being
you have posted just "Likes" to some of the replies?
 

ShiftKicker

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I was told by my neuro that PLS was symptom management only and she didn't recommend anything other than the usual anti spasticity meds- Baclofen/Tizanidine. She didn't even seem to be convinced B12 or some of the other supplements discussed here would be particularly beneficial. Riluzole was something she didn't particularly seem interested in prescribing for folks with ALS, let alone PLS. The impression I got there was it was more of a psychological benefit for people confronting the diagnosis of ALS. I would describe our region's ALS clinic as extremely conservative in treatment recommendations, so it's not reflective of what so many others here have experiences with regards to neurologists' interest in exploring drug options.
 
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KimT

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When I went to Johns Hopkins the first time (I'm not sure if I was possible or probable) I was given the Rx. After a lot of reading I decided against it. Back then (2015) my insurance paid for all but $30. I ended up giving mine to another PALS who didn't have good insurance. I do know the price came down quite a bit because other PALS I knew who were priced out are now taking it.

I do know one PALS who was diagnosed with PLS for 10 years, then diagnosed with ALS (five years ago). He had not been taking it but has since started it.
 

Jan W

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Nikki,
Thank you for the information....it was helpful. I am being treated at Johns Hopkins so I feel like a I am getting neurologists that are top in their field. My Dr. is hoping that the Riluzole will slow the progression of my symptoms. I have noticed that my balance/coordination are a little more off but otherwise so far so good. I was an athlete before this disease kicked in so dealing with the physical limitations it has placed on me has been hard. I am glad that I found this forum.
 

Clearwater AL

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Jan, as I wrote previously....

"If it significantly benefits PLS patients, I'd be all for it... for them and
any expense incurred."

I'm glad you are being prescribed Riluzole.

Maybe over the next year or two you can continue to give us input on
how you notice or don't notice the benefit of Riluzole for PLS.

Glad you joined. You can give us more input concerning PLS, which there
hasn't been a lot of.
 

Jan W

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Thank you all for the feedback and information. My Dr. has prescribed the Riluzole in the hopes of slowing the progression. He did tell me I would die with PLS but likely not from PLS. Comforting in a way but I am already having swallowing issues and significant balance problems that are definitely affecting my quality of life and are scary. I am amazed by how little they understand all of this .....
Anyway...glad I found this forum and I am grateful for all of you. Stay strong.
 

morleyde

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Messages
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DX UMND/PLS
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9/2017
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MO
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Saint Charles
Jan,

Is the swallowing issues caused by weakness or spasticity?
If it is spasticity they can try Botox, or muscle relaxers.
I have tried Botox in my legs and back and it helped.
I don't have swallowing problems.
 

wmilo

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Amazing diligence by Laurie, Nikki, and Al in keeping up with the medical and scientific literature and research on MNDs. You bring so much value to this forum. Thanks!

I was diagnosed several months after Radicava was approved in the US and have been on it for 40 months. At the time I declined Riluzole because of the (at that time) low estimates for benefit versus potential side effects. Since then, I started experiencing a taste disorder about 18 months ago which my docs did not have a recommendation for. It seemed to me to be related to "umami" tastes and I wondered if it could be related to excess glutamates. So I requested and received a prescription for Riluzole last August. Since then the taste disorder has improved, and if Riluzole is also benefitting my ALS, then yippee!

For both drugs I think it's difficult if not impossible to clinically demonstrate whether or not they have slowed my progression, but I will continue to take them because I want any benefit they provide. Hope springs eternal! :)
 
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