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frances_pierce2026-04-18

I've recently started Tiglutik for my ALS treatment and have been experiencing some side effects. I've read about potential reactions such as allergic reactions, high blood pressure, lung or breathing problems, liver problems, and low white blood cell counts, but I'm curious to hear from others who have also taken this medication. How have others handled these side effects, and is there anything specific to look out for? Additionally, are there any tips or tricks to make taking this medication easier? My doctor has advised to watch out for any signs of infection, but I'd love to hear more about others' experiences.

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last active 1d ago
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Comments (5)

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steven_lewis2d ago

If you find that you're experiencing a lot of stomach issues, there are some meds and dietary changes they can recommend to help mitigate the impact

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scott_sanders2d ago

I've been on it for a while and the only change is some weakness and fatigue. It's important for anybody on it to monitor for anything more serious and to take it easy and not overdo it. The fatigue is a bigger deal than it seems it would be, but it can be managed.

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hannah_alvarez2d ago

I had to switch to a different medication because of the severe allergic reactions. It was really scary, but my doctor was great about getting me switched over quickly. Just know that it's an option if you need it.

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christopher_hansen2d ago

Has anyone else experienced issues with shortness of breath? I'm not sure if it's related to the medication or just the progression of ALS. It's been really tough to manage.

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richard_wagner2d ago

I did not experience any life-threatening problems but I did notice a couple of times I would get a rash. My doctor had me take Benadryl for a few days and it usually cleared up.