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Magpuff

Active member
Joined
Jun 5, 2011
Messages
71
Reason
PALS
Diagnosis
05/2011
Country
US
State
Florida
City
Jacksonville Beach
I have just been diagnosed with ALS in May after 6 months of tests. My Neurologist recommends starting Rilutek and I purchased the first prescription for a monthly charge of $328.00. I find out also that when I reach the "doughnut" hole, the medicine will cost me over $900.00 per month. As of now I am just staring at the "golden bottle".

On Rilutek site they will discount $100.00 per month unless you are on Medicare (which I am) or if you are poor then they will supplement. At this rate I will certainly be poor soon.

Other sites mention getting this drug for only $25.00 or at least underthe $100.00 range.

I'm not sure I can afford this along with all of the other ALS related costs. What are other people doing?
 
My husband has taken rilutek faithfully for over a year. His doctors are still stunned at how fast his progression is. I do not see that it makes one bit of difference. If it weren't for the fact that the VA gives it to him for free, we would not be wasting money on it. Read the studies. It MIGHT prolong life as much as three months. My question is: does it prolong the quality period or the end time? Does anyone really know? At this point, we will discontinue use in the later stages.
 
I agree with Missy... Glen was able to take Rilutek with no side effects but he died almost exactly a year from diagnosis. Once it became just one more thing for him to try to swallow, we stopped. It was more important that he get his psych medicines in.
 
I took it for five months and my progression was still alarming, though probably any progression would be. My insurance covered all but $30/month, so I was lucky. I stopped it because my liver enzymes spiked WAY high, and I was more interested in qualifying for the dexpramipexole trial - which I did, once my liver fx returned to normal.
Has your neurologist given you info on drug trials you might consider? The dexpramipexole Phase III is the most talked about, and is recruiting pts now-- I don't know if there's a center near you, but you can find out on the NIH Clinical Trials website.
So sorry for your diagnosis. I hope you'll find as much support and information here as I have.

Sue
 
Katie,
First, let me say that I am so sad at your loss. My mother and my brother have passed within the last 6 years. I understand grief and it does get better with the passage of time. My sister is taking the rilatek now after just being diagnosed with ALS in May. She did happen to read that it only seemed to lengthen one's life by a few months and possibly increases symptoms of ALS. I don't think I would take it if it were my choice. You did mention the "psych drugs". My sister and my daughter went to the ALS clinic first time last Friday. They got the impression that lorazepam or zanax were not encouraged for anxiety. Relaxation methods were introduced instead. What is your experience on this subject? My sister is having a difficult time with anxiety? Thanks for your input in advance.
Kaye
 
I would recomend ativan and/or valium for the anxiety. They just have to be monitored. Watch for respiratory distress. Use common sense. My husband has been taking both - not regular, only as needed - for the last six months. He has had no significant respiratory decline in that time. The six months prior to that, his FVC dropped from 125% to 55%. He takes Celexa for depression. I think the anxiety and depression are more damaging than the medications with this disease.
 
I started on the Rilutek after my diagnosis. There are programs to help pay for the medication. Your ALS specialist should be familiar with it. I only took one month (free through the program), but stopped it due to the side effects. I hope it helps you.

Hugs
 
All psychiatric drugs react differently with different people. Ativan works well for many people. Worked great for my mother. Glen could not take it.. it made him MORE anxious and agitated! Welbutrin made his "voices" tell him to jump off ledges. He chose not to listen. Thank goodness! For him the magic cocktail was Celexa for the depression and Seroquel for the FTD related psychosis. Calming the psychosis also quieted the agitation. It took some doing, working closely with his psychiatrist, to get the right combination. There is NO way we would have been able to handle his symptoms without pharmaceutical intervention!
 
Magpuf, we do not even have it available in our country as it just is worth the money for the tiny benefit for some people. If you cant afford it, I would use the money and have some fun. Romantic dinners, travel etc. Then you create precious memories :)
 
They have several clinical trials here in Jacksonville at the Mayo Clinic which is only 2 miles from my house. They will not accept me due to my Medicare Advantage Plan. They also have a certified clinic at UNF Shands Hospital downtown which I go to but no cinical trials there. I do love Doctor Pulley. there. He is very caring.
 
Have been taking Lexapro for situational stress for 6 years prior to ALS diagnosis. It really keeps me calmer but does not stop the recent sadness due to having ALS.
 
You have the right idea. My husband and I were avid fishermen, tournaments, etc. The boat is now for sale and I am in tears every time we cross the waterway. Would love to go fishing again.
 
The daily tears will back down. You will even be able to cross the waterway and smile at the memories instead of mourn them. As a cruel twist of fate, my husband's symptoms showed up on the golf course. He missed attending the Master's Tournament in 2010 because he was home being diagnosed with ALS. At first, it was extremely painful to drive by the local golf courses, watch golf on TV or even look at the paintings on the wall of his den (mostly golf courses that he has played or places he attended tournaments). Now, I can barely get him to turn the TV off of the golf channel!

Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart.
 
Miss, about your thoughts on peace: WOW! What a wonderful way to put it..... now, if only I could feel that peace inside as well as I can "fake" it most of the time.
 
The words belong to someone else. I just don't know who. I thought they spoke volumes, too.
 
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