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.