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]

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]

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]

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]

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]

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]

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

[MtPockets]

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 dx 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]

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]

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.

[hopingforthebest]

Hi Bobby

My husband started Rilutek end of November. His PMA affects his upper body. His legs are strong.

So far so good. Med dosing time is a pain. He chose to take 5am and 5 pm as he works and wants to eat a good breakfast at 7:30 before leaving for work.

He had first ALS clinic visit two weeks ago and that was interesting. We too are new to all this. We are married 35 years this month and have been trying to stay very positive for each other and for grown kids. So the visit we cried as each team member came in. We are hoping we got it all out of our system and can move forward and head neuro assured us that my husband is doing good and he has patients with disease that has lived long lives. Hoping my hubby will be among those patients and hope the same for you!

Take care and keep in touch. We don't know of anyone else with PMA and like to hear your progress too!

:)

[Bobby C]

Hi Bobby

My husband started Rilutek end of November. His PMA affects his upper body. His legs are strong.

So far so good. Med dosing time is a pain. He chose to take 5am and 5 pm as he works and wants to eat a good breakfast at 7:30 before leaving for work.

He had first ALS clinic visit two weeks ago and that was interesting. We too are new to all this. We are married 35 years this month and have been trying to stay very positive for each other and for grown kids. So the visit we cried as each team member came in. We are hoping we got it all out of our system and can move forward and head neuro assured us that my husband is doing good and he has patients with disease that has lived long lives. Hoping my hubby will be among those patients and hope the same for you!

Take care and keep in touch. We don't know of anyone else with PMA and like to hear your progress too!

:)
Hi,

I will be going in for second liver blood test next week. The first was normal. That is good news. I will be visiting the ALS cllinic in San Antonio every three months - next time is March 12, 2008. The only change that I have been noticing is weight loss. Fully clothed on December 12th at the neuromuscular specialists, I weighed 165 pounds. On January 12th, after a full breakfast, and just stepping out of the shower, I weighed l52. I allow 4 pounds for clothing. Adjusting for this means l61 on December 12th, vs 152 on January 12th. Today, Jan 14th, before breakfast, I weighed l51 without clothing. I will start monitoring this each day, and be sure that I weigh under like circumstances. If I continue to lose weight, I will e-mail the neuromuscular specialist to see if she needs to see me again before March 12th.

Best wishes to both of you.

Bobby

[MtPockets]

I just read another study on line that said moderate exercise may help decrease the rate of muscle loss. So like someone said, get a 2nd, 3rd, opinion and then do what you think works best for yourself.

I know I am having trouble with limited movement due to not doing stretching exercises of the parts that no longer work. For example, my legs have lost 99% of all movement. I can move maybe my big toe. I use to be be able to pick up the leg with the help of a cane to wash the foot. Now the hip and knee joints have begun to seize when I try to do this, and I contribute this to lack of stretching the range of motion of my legs.

God Bless
Capt AL

[Al]

Hey Al I know things are different down there in ole Miss. but can't you get someone in to do range of motion exercises on you? I get a PSW personal support worker for a half hour 3 days a week.
AL.

[hopingforthebest]

Hi Bobby

George has also lost alot of weight! He was 203 lb before symptoms started, 2 yrs ago,
now weighs in at 171. As I said, it is all his upper body.

I cook 21 meals a week for him and cook healthy. He has never been the type that he loves to eat, he eats to live; but since this disease, I have to coax him to eat. He does have trouble with getting things up to his mouth due to arm strength etc.

[Bobby C]

Hi,


Thank you for continuing to communicate with me. I still cannot access anyone's profile, the membership list or the pm function, so I only know your husband's name. I should have mentioned that since the onset of my symptoms, I have not had one bit of pain except when I tried the AFOs with a callous on the ball of my right foot. I asked the neuro's if this is typical or normal (lack of pain) and they all said it is not that unusual. But I am thankful, and surely blessed not to have to deal with a double whammy. The symptom that gives me the most trouble is loss of balance. I am still using the cane inside the house, but will not leave the house without the walker.

I wish you and George the very best, as well as things can be.

Bobby

[hopingforthebest]

Hi Bobby

George has no pain also.

I dress him everyday and sometimes when I (by accident!!) pull his arm/arms out of comfortable range, he says it hurts but other than that, he is pain free. Guess it is better than disease and pain. Who knows! Just know one thing, this disease stinks and praying for a major breakthrough in the science department so a cure can be seen someday!

Take care.

Patty

[myhope]

I'm very new to this and very confused, but hoping you all can help me out. My mom was just diagnosed with PMA in December after 9 months of tests, surgeries, biopsies and doctors appointments. It all started after falling on Easter and then continuing to fall, loose weight, loose strength and having difficulty breathing. In November she went into the hospital with pneumonia, but after having a bout with carbon dioxide poisoning due to laboring to breath she was put on a ventilator and eventually had a tracheostomy for the vent, in which she is still on. Everything we have been told and everything I have read says that this disease is a slowly progressing disease with periods of improvement. I'm just wondering why in my mom's case it was so rapidly? Has anyone else experienced this???

[Bobby C]

I'm very new to this and very confused, but hoping you all can help me out. My mom was just diagnosed with PMA in December after 9 months of tests, surgeries, biopsies and doctors appointments. It all started after falling on Easter and then continuing to fall, loose weight, loose strength and having difficulty breathing. In November she went into the hospital with pneumonia, but after having a bout with carbon dioxide poisoning due to laboring to breath she was put on a ventilator and eventually had a tracheostomy for the vent, in which she is still on. Everything we have been told and everything I have read says that this disease is a slowly progressing disease with periods of improvement. I'm just wondering why in my mom's case it was so rapidly? Has anyone else experienced this???
My symptoms with PMA currently affect balance and weakness in legs. I have muscle twitches upper and lower. I suggest you Google progressive muscular atrophy and motor neuron disease. I found a lot of iinformatio there which seems to be reliable. Good luck and best wishes.

[myhope]

I have been to some of the sites and they are helpful. Sometimes I find it so very overwhelming though. It seems for the past 11 months with my mom we take one step forward to go two steps back, and again it just all seems so rapid to me? Right now she is having troble with bowel function, but we are unsure if it the vitamin and supplement regimen she was put on or something else? Has anyone experience anything like this?

[Bobby C]

My Hope:

Is your Mom on Rilutek and/or coenzyme Q-10? Rilutek side effects include nausea and diarehia. My neuro told me to stop coenzyme Q-10. This helped some but it has taken two months for my system to adjust to Rilutek and the vitamins and minerals: E and Melatonin prescribed by the neuro. I also take Saw Palmetto, one-a-day and the combo for joints (can't spell them.)

I hope this helps. Best wishes in this troublesome time.

[myhope]

BobbyC:

Thanks so much for your response!

My mom is not on Rilutek but she is on CO E Q10, as well as selenium, creatine, Vitamin C and Vitamin E. I also found that the LTAC she is at has been giving her iron--which they have stopped as of yesterday because they believe that to be the cause of the nausea. My concern was the creatine because the bottle did say that it could cause constipation and bloating--which she has had.

No one has talked to my mom about Rilutek at this point--do you feel as if it helps? She is supposed to go to the ALS/MND center in Cleveland in a couple of weeks and I was thinking about asking them about it and if it might help my mom.

Thanks again for your reply.

[Bobby C]

If you search this forum for Rilutek, you will see several posts from individuals who are now using or have used it. The literature that comes from the pharmacy with Rilutek states that it is prescribed for ALS patients and gives a list of side effects. I have been on it since November 19, 2007. I have had two monthly blood tests (12/19/07 and 1/19/08) to check for any liver damage which may take place. The first test showed no adverse results from Rilutek. I do not have the results from the second test. The results are faxed to my Neuro, who then sends me an e-mail about the results. I should hear from her in the next day or two. Has taking Reilutek helped me? I can only say that I do not detect any progression since I saw the neurologist on 12/12/2007. But sometimes, I tend to live in denial, being an optimist by nature. I will do my quarterly visit to the ALS clinic in March, and will know more about my progression status. My neuro was not high on creatine. She thinks it does not measure up to its promises. PMA does not ordinarily progress as fast as ALS. I think if I get to a state of rapid progression, I will be willing to try any medication that has the bit least of hope.

I would be remiss if I did not tell you about the cost of Rilutek. Our insurance has a co-pay of $30 per month (60 pills, twiice daily.) The pharmacy told me that the cost without insurance is $1005 for 60 of these little pills. I hope you Mom gets good answers in Cleveland. I will be thinking of you and her as you face this situation.

[MtPockets]

I was on Rilutek for about 6 months when my insurance quit paying for it. After talking with several of my doctors and researching it on-line I was told that the only thing it MIGHT help was my diaphragm. By using it I MIGHT extend my life by 2 or 3 months. Considering it was costing me $1000 a month I could not justify continuing the medication. The cost/benefit ratio was just not enough for me.
Another thing to consider is the POSSIBLE side effects as quoted from:
http://www.drugs.com/cons/rilutek.html

Check with your doctor as soon as possible if any of the following side effects occur:
More common
Diarrhea; nausea; vomiting; worsening of some symptoms of ALS, including spasticity and tiredness or weakness
Less common
Difficulty in breathing; increased cough; pneumonia
Rare
Bloody or cloudy urine, frequent urge to urinate, or painful or difficult urination (http://www.drugs.com/cons/rilutek.html#); convulsions (seizures); fast or pounding heartbeat; fever, chills, or continuing sores in mouth; hypertension (high blood pressure); increased thirst, irregular heartbeat, mood or mental changes, or muscle cramps, pain, or weakness; lack of coordination; lack of energy; mental depression; pain, tenderness, bluish color, or swelling of foot or leg; redness, scaling, or peeling of the skin; swelling of eyelids, mouth, lips, tongue, and/or throat; swelling of face; trouble in swallowing; yellow eyes or skin.

Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:
More common
Abdominal pain or gas; dizziness; drowsiness; loss of appetite; numbness or tingling around the mouth.

I did not have any side effects. My main concern was the cost/benefit.

I hope it works well for you and others who use it.

God Bless
Capt AL

[myhope]

Bobby C:

Thanks for your thoughts and know that I am thinking and praying for you as well. I had heard that the medicine is expensive, but my parents do have insurance if the med is listed in their formulary it might be worth a shot, especially if it might help with breathing and assist in the diaphragm considering that's where most of my mom's issues are at this point. I guess I shouldn't say most but the most worrysome anyway.

Take care and I'll let you know how Cleveland works out! Thanks again.