Unread 02-10-2008, 02:07 PM #1 (permalink)
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Default Rilutek - tips on taking

My mother was recently diagnosed with ALS and is now on rilutek. She is feeling incredibly weak taking the medication and is feeling like her stomach is upset. Have you experienced this and what have you found best for taking the medication? Is it better to take it the one hour before or is it better taking it after you eat?
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Unread 02-12-2008, 01:53 PM #2 (permalink)
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My doctor instructed me to take it either one hour before or two hours after eating.
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Unread 02-12-2008, 03:13 PM #3 (permalink)
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I had this question also and my pharmacist didn't know because she had never filled a prescription for Rilutek before. My doctor told me to crush my pill and eat it with applesauce or pudding, but the instructions said to take it an hour before or two hours after a meal. I can still swallow pills, but he would like me to begin to adapt so that I have as little choking as possible. What do those of you do who can no longer swallow pills?
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Unread 02-12-2008, 03:41 PM #4 (permalink)
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Here's what I've been told concerning the one hour before or two hours after a meal. This is said simply because the initial study on Rilutek was done with the drug taken 1 hour prior to or two hours after a meal. Studies since have shown no chance in efficacy if you take it outside that range either way. In other words, don't worry about that part. In terms of stomach upset I have never had that problem personally (cast iron gut) but usually taking medications with milk or as Shatzie said applesauce or pudding will help this. Rilutek is not a time release tablet so crush away.
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Unread 02-12-2008, 05:37 PM #5 (permalink)
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I tried taking it as directed on empty stomach but did get upsets so would sometimes take it with food. Even washed it down with Merlot on ocassion and it didn't kill me, yet. LOL.
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Unread 02-12-2008, 06:42 PM #6 (permalink)
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Default Rilutek

My husband has been taking Rilutek since November and just lately experiencing alot of nausea. Our ALS specialist said to take on 1 hr before meal. Last night we agreed to stop meds for one week to give his stomach a break.


we will see.
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Unread 02-20-2008, 12:12 PM #7 (permalink)
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I have been taking Rilutek since 11/19/2007. I started haveing diarrhea, and the neuro said to stop taking Co-enzyme Q-10. (I was taking Rilutek 50mg twice daily, the Q-10 - 300 units daily, 1200 units of Vitamen E, 30 mg Melatonin at bed time (a massive dose.) It seemed to help for a while to stop the Q-10. But alas, about four weeks ago, the diarrhea became worse, causiing several visits to the bathroom daily. I stopped all meds, took Immodium, and returned to almost normal bowel movements. I began taking Rilutek again, no other meds, only to have the diarrhea return. A call to the Neuro resulted in instructions fron the dietician to start taking Dannon Activia yogurt or Danactive once daily. I opted for the first because it is less costly. This is supposed to regulate the digestive system within two weeks. Today completes the first week. I called the ALS Clinic Coordinator (Nurse) two days ago to change my scheduled visit, and was asked how I am doing. When I told her about the diarrhea, and my weight loss (now 12 pounds since 12/19/2007) she said to call today so that she can relay the information to the dietician and the neuro. I did call but got her voice mail and am now waiting for the call back.

I will let all know what the Clinic staff says next.
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Unread 02-20-2008, 08:22 PM #8 (permalink)
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Just a note to let all know that today, my neuro's nurse (bless her, she was still at work at 7:00 p.m.) called to tell me to stop rilutek, and all vitamins and minerals until the diarrhea goes away completely. If it does not stop in a few days, then I will call our PCP and see what he says may be causing these infernal, frequent trips to the bathroom.
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Unread 02-22-2008, 08:54 PM #9 (permalink)
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I might be a little late with this post... but, here it is anyway. We have followed the instructions to a "T" with my mum. Now... it's just part of the routine and I'm certain it wouldn't matter when we give it to her. We started crushing it into a small (several tablespoons) strawberry milkshake... one hour before breakfast and two hours after dinner (12 hours apart)... now we give it to her in a few tablespoons of liquid yoghurt. I think our timing is just for simplicity as I have several people caring for her and giving meds to her. Our lives revolve around meds and food anyway. I would consider my mum very sensitive to medications with several drug allergies. We have never had any issues with the Rilutek.
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Unread 02-22-2008, 09:18 PM #10 (permalink)
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Never too late to drop in with a helpful hint Paula-Jane. How are things going?
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Unread 02-24-2008, 02:08 AM #11 (permalink)
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Hi Al...
Thanks for asking... honestly? I've not been on this site too often over the past few months as my focus is helping mum through the last part of this horrible disease. Mum is on oxygen and atavan full time and her cough is now part of her every breath, she chokes every few mins and falls asleep suddenly... she is blue around the mouth, finger and toe nails and she is often cold to the touch and then suddenly hot as her body is having trouble managing temperature. Her breathing is shallow and slow. As you are probably aware, she is DNR and no intervention, so it does get very challenging.. but, I'm still managing to feed her a little and keep some fluids in her. I'm still managing to honour almost every wish and allowing her to dictate the path of her life and death. I'm scared because I know it could be any day now... but, I'm proud of her. It's been some kind of journey... tough, sad.. but, strangely... rewarding. She is my hero and I'm privileged to be her caregiver.
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Unread 02-24-2008, 08:34 PM #12 (permalink)
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Sorry to hear that Paula-Jane. I was hoping she'd be well enough to take part in the Lithium trial. Keep in touch.
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Unread 02-29-2008, 03:44 PM #13 (permalink)
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My mother is 75 years and has ALS and has issues with her stomach, Bowel Movement, etc. We are trying to decide if RILUTEK is going to cause even more problems for her......any advice....knowing statistically there is no evidence that this drug helps...
Per my other posts, her ALS symptons are currently affectng her lower mobility and she is bed-ridden.

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Unread 03-01-2008, 04:42 PM #14 (permalink)
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Hi Ashley. If I was 75 rather than 58 I don't think I'd take the Rilutek. Especially given her condition. I do get some stomach issues with it.
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Unread 03-01-2008, 06:35 PM #15 (permalink)
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Default weight loss since on Rilutek

I don't know how thrilled "I" am with this Rilutek. My husband takes because doctor wrote the script. With researching, it is suppose to slow progression. In my husband's case, I think he has gotten worse since medicine but nothing to compare.

Horrible that this is all they got! Praying Lithium will be offered to him at his April visit.

Again, a waiting process.

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