Stopped rilutek bec of progression, notice difference?

[Gardensgro]

My sister was diagnosed in Oct 2012, went on rilutek right away. Her progression has been lightning fast, she is now in her final stages. Someone said maybe rilutek sped it up. Has anyone else had that experience? If so and the rilutek was stopped, did it slow down the progression?

 

[frankb]

So sorry for your sis's rapid progression. I have been on Rilutek since 12/10 and it has been kind to me. Haven't heard anyone remark about Rilutek causing rapid progression (should be the opposite?). My prayers are with you, your sister, and family.

 

[momap53]

So sorry about your sister. I don't believe that the drug had anything to do with her progression. Some of the newer research is showing that the rate of progression is probably set at the gene level. Some people are slow progressers and others much faster.

 

[Gardensgro]

Thank you, it has been really hard, thinking it was just a pinched nerve or arthritis to not being able to move in a matter of months has been awful. She is only 47 and has 4 children, the youngest is 15. We have two other family members who had ALS, my uncle passed away last year but he had it for 17 years, then we had a cousin who made it about a year. My sister's diagnosis was just three months ago. She can no longer swallow and it is too late for a feeding tube as her lung numbers are 17% so she would have to have a trach. Since she cannot move her hands she would not be able to communicate so she does not want the ventilator. Thank you for the prayers.

 

[HelenL]

I'm m so sorry about your sister's fast progression... hard as this disease is, the hardest is to leave your children. Mine are 133 16 and 19 now.

It may not change her mind, but eye gaze computers allow you to keep communicating.

 

[Compass Rose]

I am so sorry about your sister's rapid progression. That's barely enough time to absorb the shock of a diagnosis, let along deal with its progression. It must be terribly difficult.

I've never heard of Rilutek speeding up progression either.

 

[Nighthawk]

As far as I know, Rilutek is not meant to speed up the progression of ALS, on the contrary, it's supposed to control the excess release of a neurochemical named "Glutamate" that is thought to contribute to the death of motor neurons.

It's been said though, that (as with any drug) it might cause some unwanted side effects in some people who try it, such as elevated levels of liver enzymes and thus, people taking it have to be monitored very frequently for abnormal liver enzymes values.

Other than that, I haven't read or heard that it speeds ALS up, although, I am not taking it at this time.

HTH

 

[pscheffel]

We stopped the Rilutek, progression remained unchanged. I am so sorry for your sister and family.

 

[hn7609]

I'm not really sold on the rilutek hype. With my diagnosis the Dr. started me on the rilutek & I stayed on it for the first 3 months or so. Considering the outrageous expense & the fact that I couldn't see any benefits, I stopped taking it. About 6 months later I started taking it again at the urging of my Dr., wife, & ALS support group leader.

I've been on it for about a year now and feel that it has neither helped or harmed me in any way. Tough to say if there is any benefit or not..............I suppose that's why they have scientists to figure that stuff out.

Certainly if the drug sped up the progression then it would not be used. Supposedly it will slow down the progression but it is tough to prove as everybody progresses at a different rate. Good luck

 

[cypress]

Look in the research section at the thread on TB4, she has nothing to lose. Message me if u need more info..there is a thread on ALSTDI on it also.

 

[prattstar]

I read your post and froze. I was diagnosed a month earlier than your sister and have had some progression but in the scheme of things, it is not that significant.

I feel for you, your sister and your families. I can't imagine for a moment how difficult it must be. I feel blessed that mine is the slow progressing form.

As for your question regarding Riluzole I haven't heard it mentioned about speeding up progression at all. I only take it because I was told it should delay my symptom. I am 43 so not a huge age difference.

Warmest regards

Ian

 

[floryb]

So sorry to hear about your sister. You will be in our prayers. Actually my husband had a recent chest cold and had a severe allergic reaction because of the rilutek and tyenol that i had given him. We didnt realize not a good combination. Currently he has stopped taking the rilutek until the cold is completely over. Just thought I would let everyone know to really check your medications esp the over the counter so you don't have an allergic reaction.

 

[notme]

I'm so sorry your sister is progressing so fast. It seems to me that those with FALS (the genetic form of ALS) progress faster---I don't know if that's a statistical fact but it seems to be the case.

If she doesn't want a Vent and they can't do a PEG, has the dietitian suggested any way to get her nourished? Is she using a bipap?

Also--does she have one of the fancy computers that will help her communicate? They work with eyes for those with loss of hand use?

Wish there was more positive I could say.

 

[carolf]

I was diagnosed in 2006 so I'm into my 8th year. I have Bulbar ALS and the only areas affected are my speech and swallowing. I started on Rilutek soon after being diagnosed and have had no trouble with it. I asked about going off it but my doctor thought I should err on the side of caution because it does say it will delay the need for a trach. I qualified for the benevolent funding. Is that a Canadian thing?

My ALS dr. says mine is in remission. Anyone ever heard of that with ALS?

So sorry your sister's progression has been so fast. Pass on my love and prayers to her. She is not alone.

 

[Nighthawk]

I was diagnosed in 2006 so I'm into my 8th year. I have Bulbar ALS and the only areas affected are my speech and swallowing. I started on Rilutek soon after being diagnosed and have had no trouble with it. I asked about going off it but my doctor thought I should err on the side of caution because it does say it will delay the need for a trach. I qualified for the benevolent funding. Is that a Canadian thing?

My ALS dr. says mine is in remission. Anyone ever heard of that with ALS?

So sorry your sister's progression has been so fast. Pass on my love and prayers to her. She is not alone.

Remission?
Never heard of that with Bulbar onset--ALS, which is what I have.

Are you 100% sure you have Bulbar ALS and not something else?
What your Neuro says now?