Rilutek for PMA

[Mark]

Hi:

I was wondering whether anyone having PMA has had experience with Rilutek. I have been taking it fairly regularly for about six or seven months. I have not seen any slowdown in my progression of symptoms. However, I have been off it now several days and have significantly more weakness and I believe this happened on one other occasion when I had stopped it. I find it hard to believe it is directly related to stopping Rilutek but there seems to be an association. Thanks.

Mark

 

[Al]

Hi Mark.The funny thing about Rilutek is that you really have no way of knowing whether it's doing you any good at all. Most of the people taking it are hoping that it is doing some good. It is interesting though that you can feel a difference.
AL.

 

[Mark]

Rilutek

Thanks Al. It is hard to know whether what I experienced is coincidence or real. I also thought that it would not be possible to tell whether Rilutek was helping in that its function was to slow progression of the condition. Hadn't had a chance yet to discuss this with my neurologist but I will certainly do that. Take care.

Mark

 

[beckycooper31]

Mark, I also had a slowing of weakness and ataxic gait after taking Rilotek. I have wanted to stop taking the drug and save it for later because it hurts your liver and I feel I am in a remission or plateau as Al refers to it. This is a disease that has no known progression. Please let me know what your neurologist thinks when you are able to speak to him. Thanks and good luck to you. Becky

 

[Mark]

Rilutek

Hi Becky,

My neurologist didn't have much to say about my perceived worsening off Rilutek and now back on it I have had some days as bad as the ones off this agent so I am perplexed. I am not impressed that it has helped slow the progression but there is no clear way to know whether this is true.

Mark

 

[manfred]

Rilutek and P.M.A.

HI Mark,I can only speak from my daughter's experience.I believe Rilutek is acts as a "glutamate blocker"as some m.n.d.'s are believed to be a result of excess glutamate.My daughter was given rilutek along with an anti-biotic that supposedly has side effects that seem beneficial to m.n.d. issues....( she is however debating whether or not to continue with the anti-biotics)she was also prescribed vitamin-E...since her diagnosis I have done some extensive research on m.n.d.'s and she has added vitamin -C (time release),acetyl-l-carnitine,alpha lipoic acid and CoQ10 to the Rilutek and Vitamin-E.We checked with her doctor as well as our pharmacist and neither saw any detriment to combining these anti-oxidants.She has since gained weight,has a much better facial expression as well as having regained muscular tone and strength in her right forearm...her left forearm still has not shown any major change(good or bad)....my daughter is considered a slow progressor but the positive changes are undeniable,as everyone who knows her has seen the improvement.........I am not advising anyone to take these anti-oxidants and anyone who considers doing so should check with their health care provider ,especially if they are already taking other drugs for their condition...there are many web sites on long term a.l.s./m.n.d. survivors and they also have used a combination of anti-oxidants,diet and exercise to combat their condition....above all a strong will and positive attitude is especially important in the fight against m.n.d.'s Hope this helps,but as I said I can only speak for my daughter's regimen.....just a foot note I also wanted to know why one should take rilutek given the described benefits,and I was told by John Mcarty,PHD., of the John Hopkins institute,that " the optimistic view would be that it extends survival by delaying disease progression which means there should be a better quality of life earlier as well (less progressed)"...........so if it doesn't affect your liver,then it doesn't look as if could cause any harm( one should have blood tests taken to ensure that the liver is not affected by rilutek) as far as it's effectiveness ,like any medication (and/or supplements)everyone reacts diferrently...also one needs to take medication and /or supplements as prescribed and also long enough to give the item a chance to work... hope this helps,Manfred

 

[MtPockets]

I was taking Rilutek for about a year. I spoke to my neurologist and she said she thought at the most I could maybe last 2 to 3 months longer if I continued the Rilutek. Here in Gulfport, Ms, USA it cost about $1000 a month for the drug. I could not justify this in my mind for just a couple of extra months time of living.

I quit taking the drug over 6 months ago and cannot tell any difference at all in the
rate of the progression of the disease.

Each person has to make up their own minds as to what and how they will be treated for this disease. This is just my own personal opinion. Just wanted to give you another point of view to consider.

God Bless
Capt AL

 

[Mark]

Rilutek

Manfred and Captain Hal,

Thanks for your input. I just had another week off Rilutek and had the same experience although it remains difficult to understand pharmacologically. I was off because of gastrointestinal problems which did not abate off medication so I'm going back on because my perception is that I did somewhat better on than off. Even though better on this agent weakness and atrophy continue to progress. I would be interested in hearing any suggestions for adapting to very limited use of arms and hands.

Mark

 

[manfred]

Rilutek and P.M.A.

Hi Capt.Al and Mark,It is unfortunate tha rilutek is so expensive ( in Canada it runs about 800$ a month)so unless one has medical insurance it is a tough call to make.It is however the only drug that is fda approved right now.No one knows exactly how it works but some people claim to have positive results.Either way one can only use it if it does not affect ones liver.(users should have blood tests done to verify this).If it had not proved to have some positive results the FDA woul not have approved it.As for the 2-3 months( I hate to put a time line on things),it reminds me of an old adage..."is the cup half full or half empty" ?......2-3 months beyond what ?No one really knows their time frame with the fight against this illness...so 2-3 months really does not mean a lot.There are many people out htere with A.L.S. with a "specific time frame" according to the specialists ,yet many have survived way beyond their health care providers expectations....Stephen hawking for one (40 yrs)..Steve Shakel (13 yrs ) ...Eric Edney etc.,........So if you live longer than .......'?,what is really important is that initial time frame and how long one can project it !It really requires whatever works best for oneself along with a positive outlook and a Fierce will to overcome this condition!I know that that sounds kind of presumptous for someone who does not have this condition,but it is what I tell my daughter every time I see her...stay positive ,be strong,and fight back as hard as you can...the mind is after all an incredibly powerful thing.. as far as limited use of hands etc. my daughter goes to pilates twice a week and does a lot of hand exercises..it helps.. also I read on one site that it is very important to exercise the muscles that are healthy in order to strengthen them in the hope of "saving them from the onset of atrophy"You really need to research this affliction and make your own judgement call,the more you learn and understand about it the better it is to fight back....!hope this helps,stay positive,be strong and fight back as hard as you can!,Manfred.

 

[manfred]

Rilutek and P.M.A.

By the way are either of you taking anything else besides rilutek?Just curious as to how you might be managing?Manfred

 

[MtPockets]

Exercise?

You mentioned exercise of the muscles that were still good? I was told just the opposite. That if I exercised, I would speed up the destruction of the motor neurons to those muscles?

I know anytime I try to do anything, like yesterday I clipped my dogs hair, the next day I have terrible spasms in the muscles used. Today my arm muscles are spasming like crazy.

I know my neurologist told me to stop going to physical theraphy last year when I was diagnosed, because according to her it would speed up the detoration of the muscles and the motor neurons?

Who knows what is right anymore. Seems all my muscles are going fast now.

God Bless
Capt AL

 

[two]

I am new here, as I have spent the last year being treated with IVIG therapy for MMN. Unfortunately, that diagnosed was not correct and ALS is what I am left to deal with.

In any event, I have been exercising religiously all this time and it has made all the difference in the world. The nerves are dying, not the muscles. The muscles are atrophying because they are being cut off from the nerves, so voluntarily strengthening the muscles has worked very well for me. In addition, by markedly increasing the amount of water I consume, I no longer get cramps or spasms after exercise--but you have to really drink your water.

Of course, you need to do what is best for you and listen to your own body. But in my case, exercise is what keeps me going.

 

[manfred]

exercise and pma

Hi capt.Al, I am not sure how to read your docs advice .They are the experts(however for myself,with any illness I may develope,I have become somewhat cynical over some of the medical societys diagnosis and/ or advice...ther are Great Doctors out ther who know what they are doing...but it is "not for nothing that we are told by health care givers to get a second,third or fourth opinion "This illness and all other related M.N.D.s are so difficult to diagnose( diagnosis of various m.n.d.s in particular A.L.S. are usually through a process of elimination...even though these conditions are in some cases over 100 years old...they are still not fully understood..thats why research is on going and we are still looking for a cure) Given that there are many possibilities for motor neuron decay I dont see how a mild form of muscular stimulation could actually speed up this process...logically if the muscles react to mild stimulation the process of atrophy has not yet started......also note it is a fact not related to m.n.d.s that muscles that are not used (such as happens in physical damage due to an accident) do tend to atrophy!I am not saying your doc. is wrong,but maybe a second oppinion on this might be helpful.........also if one exercises with tthis type or any type of muscular weakness,the exercise should not take on the form of body builders rutine...gentle but exercise non the less....another reason for that "other" opinion...My daughter was diagnosed 5yrs ago with T.O.S. (thoracic outlet syndrome.. at the T.O. Neuro)she subsequently underwent two unessary operations..we were told that she would not get better but also she would not get any worse.Well 2yrs later her symptons got worse and we still believed that she was o.k...only when she started to slur her words did we insist that she get checked out ...long story short,at the Montreal Neuro,after only three visits she was diagnosed with A.L.S...I couldnt get my mind aruond this at all!So she went to Ottawa where she was diagnosed with P.M.A. ( by a neurologist with A.L.S. expertise as well as alspatients,who had also worked for the Mayo Institute)My daughter is going to an A.L.S. clinic and they know she is going to pilates twice a week and nobody has told her to stop exercising..she definitely has improved and a couple of weeks ago she was riding her bike with her kids.Since our experience with the M.N.I. in montreal,I have "surfed" the web from san diego to tokyo..I have down loaded more than 2000 pages of info on the various M.N.D.s and still continue to do so...I dont remember exactly where I read about the exercise issue but I will try to locate the info again..It might have been on steve shakels web site..(after being diagnosed withA.L.S., he took it upon himself to take care of his health regimen afterbeing told that there was nothing that he could do...one year later bt his account he gave back his wheelchair and started walking 1km a day..that would be called exercise.Any way if exercise makes you uncomfortable you should probably lessen the intensity of what you are doing or stop altogether,my daughters exercise routine is simple and not strenuous ...hope you can find a happy median if you should decide to try exercising again.Manfred.

 

[midwestgirl]

HI!

I am not sure if the mechanism is the same in PMA as ALS, but from what I've read the key point is not to continue exercise or daily activities to the point of fatigue. If body/ muscles are still fatigued 20 minutes after an activity, decrease the intensity of exercise. I do not know if exercise to the point of fatigue leads to progression of disease, but in ALS strenuous exercise can lead to fatigue that will remain for the rest of the day, or even the next day ... without building muscle or endurance. (The loss of motor neurons diminishes the ability to build muscle after such activity)

Range of Motion (ROM) exercise is excellent and can keep joints from getting stiff and painful and helps prevent "disuse atrophy." Stretching is also good to reduce muscle spasms. Also exercise to the point that it is not fatiguing is good.

Now, if I could only get myself into a good exercise routine!

 

[Bobby C]

Rilutek

I am new to the forum. I have been diagnosed with PMA, after many, many tests (MRI, EMG, NCS, spinal tap, blood, etc. etc.) Four neurologists (one a neuromuscular specialist) concur on the diagnosiis. I have been on Rilutek for six weeks, witout any notable difference in ability to stand or walk wiithout assistance. I did pass the first blood test for possible liver damage. I also take Vitamen E (1200 units/day), Co-enzyme Q-10 (300 mg/day) , and Melatonin (30 units/day.) I had to reduce the Q-10 because of nausea. All these prescribed by the neuromuscular specialist.

My wife and I have just begun this journey and are adjusting our lives to cope with it.

Good luck to all of you.