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New member
Oct 2, 2008
My wife has had ALS for approximately 2 years, and now only has partial use of her left arm. Fortunately not much of a problem with swallowing and using oxygen about 3/4 of the day. She hasn't been eating hardly anything since a bout with pneumonia about 6 weeks ago, so she is getting extremely thin. She has been dealing with nerve damage pain for 7 years and has been on a lot of pain medication during that time, so her tolerance to pain medication is pretty high. We have had in home hospice care since coming home from the hospital following the pneumonia. But a couple of weeks ago, she complained of the pain being too intense, and she went into a hospice facility for 5 days. during which they hooked her up to a morphine pump. This has helped a great deal, but it is pretty new to us. She also takes morphine sulfate orally and oxycodone, which she has been taking for years. She still gets spikes of pain and the doctors have been reluctant in giving an idea about what should be considered maximum dosages. I am hoping that someone could share their experience with dosages, just so I would have something to go by. Right now, her pump is set on 11 mg/hr, with 3 mg bollus, and the morphine sulfate is 20mg/ 1 ml, and the oxycodone is 30 mg. She had also been using the duragesic patch, before they hooked up the pump, but they said to discontinue the patch. The other day she was crying in pain, and with 2 extra doses through the pump, she got 17 mg of morphine plus 60 mg. of morphine sulfate, and also 90 mg. of oxycodone, all in the first hour, and all that did was bring the pain level down to a tolerable level. I have nothing to base realistic dosage levels on other than what other patients may have encountered. Right now, with the latter stage that she is in, the only plan is to maintain as much comfort as possible. Any insight into this would a great help.
Thank you.
I would get intouch with Hospice they are more equiped to help you
In my opinion I would think that the most important thing right now is her comfort
So the dosing would be as much as it take to achieve that.

My prayers go out to you ,your wife, and family

Bill, I'm so sorry for your wife's ordeal. I hope the hospice gets her dosage correct and provides the relief she needs.

My husband is on the duragesic patch (He has Parkinson's, plus a long history of nerve pain, as your wife does. I'm the one with ALS) and he also takes a break-through pain med.

I want to encourage you to do everything you can to get your wife to eat and stop the weight loss. All these pain meds have nausea as a side effect, and I wonder if that might be making it harder for her to eat. My husband has been losing weight, too, as he can only take a couple bites of food without becoming very nauseated. I am giving him 3 ounces of Ensure every hour or so ... he can get that down ... and it adds up to four or five cans a day. If she is getting enough nutrition, I think it will ease her discomfort.

Hang on.
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