Rilutek for PMA

[hopingforthebest]

Rilutek

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]

weight loss

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]

no pain

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 new

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; 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.