Rilutek

[Jennifer51]

Allergy pills

Hi, Jennifer ...

allergy pills...my husband started using them for hay fever, then we found them good as a mild sleeping pill. Just recently I noticed that when I take them they seem to improve the effect of the riluzole

That's very interesting about the allergy pills enhancing the riluzole. Let us know what your neuro says about them. It sounds like you're doing pretty well ... hope so! Glad the riluzole is working!

Take care.

UPDATE on the allergy pills....I sent the list of active ingredients to my lovely Italian neuro, and he has taken it seriously and is sending the list off to some other people (researchers) to look at...he says they never know how drugs may interact, so it is well worth looking into...needless to say we are now going to stock up. I will update when he comes back with an answer

 

[rowland's wife]

rilutek and smoking

does anyone take rilutek and smoke? my husband has a prescription for it but doesn't want to fill it because we read that it is not as effective if you smoke doesn't want to quit smoking can't blame him he enjoys it

 

[Al]

Even if it's slightly less effective it's better than nothing. I do have a friend who smokes and takes it. She is starting to have breathing issues so may have to give up smoking or give up breathing. By the way, welcome but sorry for your husbands diagnosis. Hope we can help.

AL.

 

[brendapals]

hey rowland's wife,
I was diagnosed on 6/3/08 and started taking Rilutek on 7/1/08. I actually stopped smoking on 6/4/08 because I read the Rilutek was 20% less effective if you smoke. Well, MY neuro told me on 7/1/08 that it was completely up to me to decide.

Needless to say, I still smoke, not nearly as much as I used to, but I do smoke, and I take Rilutek two times a day since 7/1/08.
I guess I won't know if it's 20% less effective or not-but I'm not really worrying about it too much.

My breathing is just fine for now, I get short of breath if I have to go up a flight of steps or something, so I just use the elevator!
take good care,
brenda

 

[SteveS]

Micheline started taking her Rilutek yesterday 50mg twice a day. We are hoping she does not have any ill side effects from it especially some of the stories I have read about it speeding up the progression. This drug scares me and I hope it does her some good but only time will tell I guess. I am hoping since so far the disease is only affecting her legs it will slow down the progression to upper body and beyond.

 

[anneinma]

My dear husband had a problem with Rilutek. He lost all of his taste buds. His neurologist had never heard of this side effect but advised my husband to go off the drug as taste buds were important. My husband went off it and got his taste buds back.

I believe that articifial sweeteners are very dangerous. Also be aware of water bottled in plastic bottles. Use glass.

 

[JohnMc]

There are times when I have trouble swallowing Rilutek (like everything else) and it gets stuck in my throat and begins to disolve and my whole throat and my taste buds get numb.

I haven't really had any other bad effects from the drug.

 

[Jennifer51]

I cant take ANY pills now with liquid...so I used yoghurt, then when that didnt work I went on to pureed or mashed potatoes or any mashed vegetable of that consistency, sometimes with gravy...I can take reasonably big pills now...and none of the numbness of the rilutek..oh how I hated that. If the numbness is all that stops you taking it, then try this..

 

[Danijela]

My partner diagnosed 2 weeks ago was put on Rilutek immediately and has been taking it for two weeks with no side effects. His neurologist's take on this medication was 1. it is the only approved one 2. it has shown to slow down the progression of the disease (however marginal) 3. it has relatively insignificant side effects in most cases
To me, that means it is worth a go.

 

[Jennifer51]

Danijela
Thats how I feel. Have you heard about the new uk trial with Lithium...I am hoping to get on it...I am being assessed Dec/Jan. I was diagnosed way back in March -April, live in London. Please feel free to email me, maybe I can get you up to date with everything I have found helpwise in all aspects of this horrible illness.

jennifer

 

[Danijela]

Hi Jennifer,

the consultant informed us of the Lithium trial, and I think they will have a group up and running at the MND clinic up here in Manchester. But we have not enquired about the selection criteria for the trial etc. as basically we were both in shock and not prepared for this diagnosis. I will drop you a line, thanks for providing an email address. We lived in London for many years, moved to the North West in 2004. Take care, Danijela

 

[GlenBrittle]

Hi Allistar and everyone else,

I have been taking Rilutek for 2 1/2 weeks now and have started Lithium this morning.

I took the two doctor approach to getting it. My neuro doc prescribed the Rilutek and my family doc set me up with the Lithium. There are upcoming trials here , but there is no promise as to what you will be taking. Piss on that , I want to know what I am taking.

The only side effects from the Rilutek that I have found is if I take it too far away from meals is that I can fart more than a cow. 1 hour before meals is the best for me.

The Lithium, well its only been a couple of hours, and its Saturday, a known lazy day for me .

Hope this helps.

Glen

 

[Phil M]

At the time I was diagnosed 5/08. My symptoms were slurred speech, and cramping under my chin. That was about it. Started Rilutek immediately. I didn't have muscle twitching until 3 or 4 days after starting rilutek. Coincidence? I don't know...maybe. I was a little scared of it at first, but I have no side effects at all. Since I started it right away...I have no idea if its helping me or not. I'm still in pretty decent shape though. Speech, eating, and swallowing are my main problems. Right now its just a uncomfortable inconvenience.

 

[pattyp]

I was diagnosed in Feb 2008, legs only. I've been taking Rilutek for about 6 months. The only side effect I have is constipation :-( I debated for a while whether to take it or not since, as I understand, it will only extend life 3+ months. My question was now or later? I may not want those 3 months later! But I finally decided to give it a try and all I can say is my disease is still progressing, but not too rapidly. However, when I was diagnosed, I was told that I had a slower progressing form anyway. My first symptoms were about 4 years ago. A slight weakness in my left leg. So who knows whether the Rilutek is slowing it down or it is progressing as it would have anyway? I guess my opinion as of now is, if it isn't harming me, it can't hurt and might help.

 

[BarryG]

I was diagnosed with Bulbar onset AlS in January 2008 and went on 50mg of Rilutek twice a day. In the beginning I could swallow the pills with water and I the only effect it had on me (that I could tell) was that it ruined my sense of taste. The taste of food wasn't affected much but liquids (even water) tasted awful, and when I couldn't stand drinking a beer because it tasted so bad I knew I had to do something. I talked to my doctor and he recommended cutting the Rilutek back to one 50 mg pill per day which is what I have done. I now take it with a bit of yogurt, apple sauce or pudding and it goes down ok. My taste came back and now I can drink my beer. Lots of protein in beer.

The only thing I still don't get is the instructions to take it on an empty stomach, I never have an empty stomach, or at least I can't go without food for any time at all. Even when I was healthy I was skinny and ate all the time. Now, pretty much my whole day is spent eating.