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trish

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I have read on the forum, of people have stopped taking Riluzole because of side effects. My husband has been on the drug now for seven months, and most of the time he has had upset tummy, which has got worse during the past two months. Although he eats very well, he has lost 44lbs. He decided to stop taking the Riluzole three days ago for a week, to see if it would help him. What has surprised me is that today I have noticed a difference in his speech. I am able to understand him a little better. Mind you I still battle with the words, but when he spells them, I find it a little easier--something I battled with yesterday. Could this be the withdrawl of the Riluzole?. It worries me that he is not taking the drug. He was diagnosed with bulbar onset in Aug 2006. We dont know what to do. Do we continue or not. Any advice from patients who had the same side effects. Thank you in advance
trish
 

anne

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I find your post rather interesting and you have me thinking now. My mom has bulbar symptoms and started taking Riluzole the end of June 06 and by the end of July 06 we were not able to understand anything that she says. She is not able to verbally communicate at all. She has not had any side effects from the medication. Not too sure what to think. Anne
 

Al

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I've quit taking Rilutek because of stomach issues. I've been on and off it a few times. At first they said it would prolong life for 3 months. Now some studies are saying 1 year. So maybe we should rethink our position. My issue with it was passing gas and having to change shorts. Not nice but reality. Welcome to reality TV with ALS. Who needs Fiji? They probably have the craps too but at least they're getting paid. LOL.
AL.
 

trish

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trish

Thank you for your reply. The weight loss is also of concern. Thank you for this forum. It has been a great comfort to me during the past few month. At least I know I will get an honest answer here.
trish
 

anne

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Al: you are rather funny! Anne
 

edna may

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Rilutek

anne said:
Al: you are rather funny! Anne

Anne I sent you a private message. & was told you could not receive it? I just wanted to tell you that your mum & I have many things in common. I can no longer speak & no one understand, just how devastating it is, not able to converse with the ones you love. I now use the puter instead of my voice.
 

anne

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Hi Edna May: Not sure why you were not able to send me a private message my mail box is completely empty. Al had a problem with my mail box a couple of weeks ago but at that time I was not aware that I had to empty it. Yes, Edna I could not imagine not being able to talk. My mom is really not from the computer generation so therefore she writes things down for us. That works for now. She is handling the situtation much better than I am. I feel like my entire life is being consumed by this disease. It is hard to stay upbeat at times.

Take care. Anne
 

edna may

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What's your opinion

anne said:
Hi Edna May: Not sure why you were not able to send me a private message my mail box is completely empty. Al had a problem with my mail box a couple of weeks ago but at that time I was not aware that I had to empty it. Yes, Edna I could not imagine not being able to talk. My mom is really not from the computer generation so therefore she writes things down for us. That works for now. She is handling the situtation much better than I am. I feel like my entire life is being consumed by this disease. It is hard to stay upbeat at times.

Take care. Anne

Hi Anne, I have a litewriter but find it easier & faster to write everything down to. Tell your Mum Chin up. & keep the faith, you too Anne EM
 

JACKIEMAX

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bulbar vs. limb onset

i have a question if someone could help me with an answer. my husband has limb onset and have had the symptoms a year and a half now. every week he gets a little weaker, and walks through the house now with a walking stick. my question is this: all of his symptoms so far have been with his limbs. he can chew, swallow, talk, etc.

will he eventually get the bulbar symptoms? WILL THEY BE A PART OF IT DOWN THE LINE?

his main problem is respiratory - he has such trouble breathing, and uses his inhalor all 4 xs a day, plus sleeps with his bipap mask and oxygen. he says his breathing is getting more difficult.

is the breathing part bulbar? what should we expect next? can someone or several of you help me with this.

thank you and God bless you all. this forum is such a blessing to me.

jackiemax
 

shellshell

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I have the same questions as jackiemax, my dad's ALS began as limb onset and he is now experiencing a lot of respiratory issues, very out of breath after walking short distances and is even having difficulty taking a shower, he is so tired after a shower from trying to stand. We are in the process of getting a shower seat to help...

Michelle
 

JACKIEMAX

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answer to shellshell

you must have been online and answered mine as soon as you read it. my husband also has a big problem taking a shower. it just drains all his energy, and i have actually seen him break out in a sweat and have to sit down to put his clothes on after taking a shower.

does your dad use the bipap shellshell? if not, it should help him a great deal to use it. al, the moderator, suggested we ask our dr. about it, and it has most likely saved his life by now using it.

a big question for some or many of you from me is this? when your breathing becomes labored and you cannot lie on your back without the bipap on, and it takes all your breath to walk through the house, what is next? is this nearing the end?

i don't know what to expect next or when, and it is heartwrenching to watch him struggle so.

would love answers. thank you all. jackiemax
 

shellshell

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My dad doesn't use a bipap yet, since he was just diagnosed in February 2007 his first appointment with an actual ALS doctor is Monday 4-16 so I am hoping we will learn a lot more after that appointment. I will be sure to ask some of these questions when we go...I believe he has to meet with 5 different doctors on that day...gonna be a long day for him I'm sure...

Michelle
 

hboyajian

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Hi Jackiemax, It is really important to monitor breathing issues. With my dad, it was hard to tell when he was tired from muscle weakness (just doing up a button on his shirt was exhausting) and when it was his lungs. I was mistaken in that I thought he would become completely paralyzed in his arms and legs before his breathing would become so bad as to be life threatening. I think someone else mentioned CO2 build-up as a concern. This happens because the lungs are not strong enough to breathe out effectively. It can cause lethargy and disorientation. The blood test for carbon dioxide is not fun, because the blood has to be taken from an artery, not a vein. The bi-pap should be helping with the whole breathing process, in and out. Maybe it is time to have it adjusted to make sure it is operating optimally and to determine if it is time to use it more frequently. I hear your concern and love for your husband. I hope that you can get help with this soon. Holly
 

anne

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Thanks Edna. Anne
 

nspoc

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Hi Jackiemax - Regarding the breathing - my friend with ALS cannot breathe at all lying down flat. She wears her bipap about 13 - 15 hours per day - in bed a lot. Limb onset, no bulbar symptoms yet. Her very first symptoms might have been profuse sweating on exertion. Gets very tired now in the bath. Perks up pretty well with a little bipap. Sits up fine, can be up and about in her wheelchair up to 10 hours (if her rear end can take it), Her breathing is worst lying down.

She qas been on bipap for about a year - clinic says she has many adjustments to go.

I guess what I am saying is that this does not sound like the end. It is typical to be worse when flat. Does your husband seem interested in things? Is he alert?

Also - this might not be bulbar, it sounds more like intercostal muscles or diaphragm are getting weaker.

Good luck! Beth
 
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