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dadsgrl4life

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Hey guys I have a question on my mind that we are having a hard time with. As you know my dad was diagnosed March 7, 2008 with the Slow Progression ALS.... His sympotoms arent showing signs of SLOW progression...is it possible that he was mis-diagnosed and he has some type of the fast progression?

He is on that drug, relutex and it seems to help but then again it makes him very tired. Is that a side effect of this drug?

Please if you know the answers to my questions PLEASE PLEASE PLEASE help me out!


Thanks so much!:mrgreen:
 

sharonca

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Heather -

I took Rilutek for two months starting in December. I did not have any side effects. I don't think that you can really "feel" if it is working or not - it's not that type of drug.

I starting taking Lithium, monitored by my General Doctor, in February and the progression to other body parts (mine is leg onset) stopped. I'm not saying this is working the same of everyone taking Lithium or that it might work for your father -- I'm saying it is working for me. Since Lithium is to be taken in a very small dosage compared to what you would take if you were, say, bi-polar the side effects are usually not much. If you are interested in learning about this therapy you can do a search for Lithium on this site. Remember if your father were to decide to try this he MUST be monitored by a doctor.

Sharonca
 

andyvaughn

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Heather,
My husband had severe fatigue the first couple of weeks on rilutek. It was really scary, the first few days he could barely lift his legs, slept a lot. After a couple of weeks he seemed to adjust to it. He had the same thing at the start of lithium also. Like Sharonca, lithium seems to be slowing my husbands progression. We were at the clinic last week, and there was no detectable loss of function or strength from his visit 6 wks prior. The lithium has to be carefully monitored by a doctor.
Andrea - wife of Pals Jim
 

Al

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Hi Heather. Tiredness can be a side effect of Rilutek. What can happen with progression of ALS is the plateau effect, where you progress slowly or not at all. This period is different for us all. Then you start a slide downhill. once again no one knows how long or how bad it will be but you usually plateau again. Hopefully your dad will plateau quickly.
AL.
 

dadsgrl4life

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thank you all for answering my question on the Rilutek. It means a lot that you all are very helpful with advice on the information! Thanks again and I cant promise I wont ask any more questions!
 

Icanmanz

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Heather, I have been reading your posts from time to time. My heart goes out to you, dear. I will certainly keep you and your dear dad in my prayers. You sound like a beautiful daughter. I bet your dad is really proud of you. May God bless you, and your family.

Irma
 

dadsgrl4life

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Thanks Irma, that really means a ton to me! And thanks to everyone else too, it all means a ton a ton to me to know that you are all out there supporting everyone going through this nasty disease!
 

CindyM

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Thanks again and I cant promise I wont ask any more questions!

Don't make that promise, Heather. Your Dad needs the research you gather here. Ask anything! that's what we are here for! :-D Cindy
 

pmbenb83

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Hello everyone,
If you all didn't know already, Heather is our beautiful loving daughter. :) I am so proud and glad that she turned to you all, as I did many months ago. You are a wonderful support group, one of the best that I've come across in my lifetime. Thank you for all of your help and sharing your personal experiences.

As for the Lithium/Rilutek combination therapy. Eric's doctors recommended that he not try it, because he has slow progression and they do not want to risk speeding it up. I wonder if people are having really good results and if he should pursue this a little more with his doctors. We have an appt this Wednesday, so I think we will ask again. There was a spreadsheet to follow PALS' results. Could you please tell me where to find the spreadsheet? I've tried looking through threads and can't seem to find the link. I need more information on the results in order to help him make a sound decision.

Take care.
Pam B in Va

Heather - Thanks so much for asking your question sweetie, because we received some really good feedback for your dad. ;) Love ya! Mom
 

pmbenb83

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Thanks Al. Have a great day!

Pam B in Va
 

gifogif

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I to spoke with my Dr. about Lithium and his reply was exactly the same. He did say that if I wished to pursue Lithium he would help me get into a clinical trial. But he was clear that he was not comfortable fooling around with the slow progression.
 

pmbenb83

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Hi gifogif,
My husband met with the clinic staff last week and I think he really doesn't want to try anything in fear of causing it to speed up. I'm a little perplexed by the docs though. In one breath, they say don't do the lithium because it could speed it up and in another breath, hey you want to try our trial (s). I still wonder if these docs are still out to make a name for themselves or truly help their patients. Don't get me wrong, I like his doctors and they have been wonderful, but that totally confused me.

Anyway, so far so good and "if it aint broke... don't fix it" will be our motto. :)

Take care.
Pam B in Va
 
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