Doreen AM
Forum Replies Created
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I had responded previously that my husband had taken Relyvrio for 6 weeks and had no side effects. Unfortunately, shortly after sharing that, he began experiencing GI *side effects that were keeping him homebound. We stopped the Relyvrio and the side effects went away. His doctor said he can either try a smaller dose or stop it completely. He opted to stop it completely.
*Nausea with vomiting necessitating carrying an emesis bag constantly and constipation leading to diarrhea multiple times a day.
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My husband has been taking it for about 6 weeks. We have not noticed any side effects. The bitter taste (and it is bitter) is not an issue for him as he takes his via his G-tube.
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I am wondering if you could have been sent the wrong syringes. It happened to us once. They sent us a bunch of catheter tip syringes instead of EnFit Tip syringes. My husbands G-tube was recently changed (4 months ago) and the end of the feeding tube is the same as it’s always been.
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My husband’s neurologist recommended the 2nd booster. We got them together on Monday.
Our vaccination has been: Moderna (initial), Moderna (subsequent), Pfizer (booster 1), Pfizer (booster 2).
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Hi. My husband first used Atropine drops for excessive saliva. That worked for a while and then the issue progressed and it did not work. Then he tried Glycopyrrolate and he did not notice any improvement with that. Then he had Botox injections in his salivary glands. The dosage that works for each individual varies greatly therefore they start with a low dose so as to not cause one to be ‘too dry’. The first dose didn’t help much. The second dose (a little higher a dose) helped some. He is now ready to get his 3rd set of injections. He is going to request a higher dosage and a ‘better’ Botox (we learned that there are different types of Botox and the doctors are dictated by insurance companies to use the lesser effective one first before moving on to the more effective one). His care team is in the process of scheduling his next Botox injections and in the meantime, he is experiencing significant saliva production. His doctor prescribed Hyosyne (Levsin) to use while waiting for the next Botox treatment. So far it seems to be helping. He’s only on his second day of it but he is noticing a difference. His care team is reluctant to prescribe the Scopolamine patch as he has bulbar onset and has full use of his extremities. They are afraid it will cause dizziness and other issues that would hamper his current state of mobility. We have learned that it is all a trial and error process. What works great for one individual may not work as great for another. I hope you found this information helpful. I am very sorry for your husband, you, and your family. Although a cure is not immediately in sight, I feel it is so important to ‘live with ALS’. By that I mean to enjoy every moment, every opportunity, every scent, every sound, every sight….right down to the second of every minute. My husband was diagnosed 9 months ago. Please allow yourself the time you need to adjust to this new way of life. For the first 4 or 5 months, all I could do was cry…..and ask “why him”? I had to get through that stage to be where I am now ‘living with ALS’. I do still cry and ask why but nearly as often, we both do. But we’re living our life.
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Hi John. The end of the feeding tube that sticks out from the belly has an adapter so that the syringe can be (sort of) screwed into it. The type of syringe needed is an ENfit syringe. When you leave the hospital after getting your feeding tube, please make sure they send you home with an ENfit Syringe. After that, you will likely get your supplies via a company and they should know you need ENfit Syringes but it would be good to let them know as well. Our first shipment was the wrong type of Syringe (pointy tip). You can google ENfit syringe to familiarize yourself with what the tip looks like.
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If you are within an hour of Boston, I can bring one to you.
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Sonsu, do you have a contact person you could call to get the correct syringe to you?