Is anyone taking Rilutek?

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lornajean45

New member
Joined
Nov 27, 2011
Messages
7
Reason
PALS
Diagnosis
09/2011
Country
US
State
washington
City
Sunnyside
I have been taking Rilutek since October. I called in to my pharmacy for a refill on this med on wednesday, pharm said it would be ready on Thursday @11:00. So, Thursday I go in to pick up my Rilutek, and they ordered the wrong med. The pharm stated they would reorder and I could pick up on Friday @ 11:00. At this point its ok as I do have enough to get me through the evening dose and morning dose. Well, I go in on Friday and they have no record of it being ordered and the pharm tech who took the order went home sick and they can't get a hold of her. At this drugs point I am worried, as the pharmacist is telling me they will not have it in till possibly Monday!
I will be missing at least 6 doses, of a drug that may slow the progerssion of this wicked disease. Has anyone out there missed doses of this med? The pharmacist had no info as they are not familiar with this drug!
 
I'm not a doctor but don't think missing the doses will do you any harm.

AL.
 
I suppose the fear would be that the drug would now be totally out of your system and you would have to start all over to get the full benefit. I would check with another pharmacy closeby. Surely they can help you get it sooner or at least talk with the head pharmacist to understand what the implications would be in the interim. I know it's frustrating because it is a very expensive drug. My mother opted not to take it.

10starr
 
Just resume the drug when you get it. Always place your order a few days prior as most pharmacies don't routinely stock it. My pharmacy always had to order it, so took a few day to get. I wasn't able to continue using it as it affected my liver function tests.
 
Bruce has mssed his several times, no problem..
 
That pharmacy is an absolute disgrace. You should change now if you can because if that happened further along in the illness with a medication that helps with your breathing you won't be physically able to wait a day, let alone 3 days! The pharmacist is not familiar with this drug? Are you kidding? Where did he get his degree? On the back of a cornflakes box? Where i come from its the only medication available for MND. They can't afford to be so lax when dealing with this illness.
 
I only take one a day...made me too tired when I took two. Sometimes I stay in bed longer to avoid taking it. Trying to swallow that before it starts dissolving is a challenge for me. Tastes awful I found too! My stomach still gets upset from it even though I've taken it for two years. My breathing is still strong while the rest of me is getting weaker. Maybe it is helping.
 
Rilutek is not a common drug. We use Rite Aid and they have it automatically ordered. Missing a few doses won't hurt you, but ALS is a rare condition. Talk to the pharmacist about making sure they reorder for you.
 
The pharmacy cannot be expected to stock expensive rare drugs. We, as patients, should know when we are running low and plan ahead.
 
I work in a pharmacy. They have books....big books. Most pharmacists will look up the medication in their books and tell you what you need to know. They are supposed to councel you on the meds you are taking. Id get a new pharmacy. This one sucks.
 
You need to quickly get another pharmacy. We have too much on our plates to deal, without the "so called" professionals mucking it up. They must be working as hard for your well being as you and family members are. It is inexcusable, that they would give you the bogus report that they could not reach the tech. Drop them and run like the wind. Surely in this day of drugstores on every block, that you have other options. Think about this: if they have failed you on this item ( and this drug is well known for ALS) what pray tell will they do in the future when other meds are prescribed for you.
 
FYI

The words "pharmacy " and "pharmacist" will send your post into moderation.

Don't shoot the messenger - I have no control over this.
 
My husband quit taking it because of the side effects he had.
 
For this and any other chronic med, consider mail order pharmacy w/ automatic refills if your plan offers that. You may also owe a lower copay that way.
 
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