Acthar Users

[Dreams008]

I'm going on my third day of Acthar. They say that people have an increase in appetite, but I'm not hungry for anything and my taste buds are all out of whack. My tuna, which I normally love for lunch, I literally had to make myself eat and my applesauce tasted like yellow squash. Is this normal? I'm hungry, but nothing appeals to me or tastes good.

[DebbieB]

Hi Dreams, Unfortunately, I do not have any advice for you, I'm sorry....I had never heard of "acthar", despite having MS for almost 25 years! I just googled it.

Sorry you are having difficulties....and sorry I don't have any advice.

[MSer102]

Hi Dreams008: As we talked about in another thread, the side effects of Acthar are apparently similar to the side effects of high dose steroids.

I've never been on Acthar, but a always get blurry vision on high dose steroids. The other thing that always happens to me on steroids is that my sense of taste gets knocked out for several days. Everything tastes like cardboard! Every time.

I've learned that my steroid time is a good time to eat those cheap frozen dinners because I can't taste how bad they are! But they fill my stomach and they're cheap and fast to put in the microwave when I don't feel like cooking anyway. I do buy the "healthy" (ha!) ones with the lowest salt content I can find because you are absolutely right about the salt issue and bloating. Low salt content usually means bland but it's OK because I can't taste it anyway.

You are definitely not alone with the icky taste thing. Fortunately, it too shall pass.