“Chemo Brain” of brain fog in autoimmune diseases

Posted by vball91 @vball91, Mar 4, 2023

I have an autoimmune disease (autoimmune cerebellar ataxia) and I’m hoping to start Cytoxan (a form of chemotherapy) soon. My question is: can I get “chemo brain” even though I don’t have cancer? I figure the answer is yes, but just want to confirm.

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@vball91 I’m so sorry to hear you have cerebellar ataxia. That’s sounds so similar to what i have which is chronic lymphocytic inflammation on my brain. I first had rituxan but it failed after 16 months, so I,too, had cytoxan. To say the least, I was not thrilled. And, yes, I did have some brain fog. I don’t know if it was caused by the chemo or my disease. For me, it was never too bad. I just felt like I was walking around in a fog. I’ve been saving this article which you may find interesting:
https://www.healthline.com/health/brain-fog
The only problem that i found with cytoxan was the steroid loading done before each dose. I had not read, or been told, to avoid ALL acidic foods/drinks for about 24 hrs after the steroids. My lovely husband had fixed lasagna for dinner and after 1 bite, i was screaming because the pain in my stomach was so intense. ER thought it was a ruptured ulcer and had to give me morphine. After that episode, i really did some more research and was very careful. SO, be sure to avoid tomatoes and citrus!!!!!! Or anything acidic!
But, on the other hand, I thank God for all these medicines today!
Can you tell me more about your cytoxan regimen?

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@becsbuddy

@vball91 I’m so sorry to hear you have cerebellar ataxia. That’s sounds so similar to what i have which is chronic lymphocytic inflammation on my brain. I first had rituxan but it failed after 16 months, so I,too, had cytoxan. To say the least, I was not thrilled. And, yes, I did have some brain fog. I don’t know if it was caused by the chemo or my disease. For me, it was never too bad. I just felt like I was walking around in a fog. I’ve been saving this article which you may find interesting:
https://www.healthline.com/health/brain-fog
The only problem that i found with cytoxan was the steroid loading done before each dose. I had not read, or been told, to avoid ALL acidic foods/drinks for about 24 hrs after the steroids. My lovely husband had fixed lasagna for dinner and after 1 bite, i was screaming because the pain in my stomach was so intense. ER thought it was a ruptured ulcer and had to give me morphine. After that episode, i really did some more research and was very careful. SO, be sure to avoid tomatoes and citrus!!!!!! Or anything acidic!
But, on the other hand, I thank God for all these medicines today!
Can you tell me more about your cytoxan regimen?

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That’s very helpful, thank you. I’ve been on IV steroids and Mycophenolate for about a year. I’ve stopped the steroids twice in that time because the Mycophenolate should’ve worked, but I got worse both times. So the steroids help, but I can’t stay on them for much longer. So I’m trying Cytoxan. I have to freeze my eggs first, because Cytoxan May cause fertility issues. I’m 29. But once that’s done, I think I’ll have a Cytoxan infusion once a month for six months.

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@vball91

That’s very helpful, thank you. I’ve been on IV steroids and Mycophenolate for about a year. I’ve stopped the steroids twice in that time because the Mycophenolate should’ve worked, but I got worse both times. So the steroids help, but I can’t stay on them for much longer. So I’m trying Cytoxan. I have to freeze my eggs first, because Cytoxan May cause fertility issues. I’m 29. But once that’s done, I think I’ll have a Cytoxan infusion once a month for six months.

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@vball91 As you know, these autoimmune diseases are just so confusing and all the words are big. I feel like I’ve been learning a foreign language!
The steroids i was talking about are high dose steroids just before you get the cytoxin. The whole procedure takes about 3-4 hours so bring a good book. Another side effect i neglected to mention, is slight hair loss. I noticed the hair on my brush but my hair never looked thinner.
Good luck to you-I hope you get this under control! Becky

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@becsbuddy

@vball91 As you know, these autoimmune diseases are just so confusing and all the words are big. I feel like I’ve been learning a foreign language!
The steroids i was talking about are high dose steroids just before you get the cytoxin. The whole procedure takes about 3-4 hours so bring a good book. Another side effect i neglected to mention, is slight hair loss. I noticed the hair on my brush but my hair never looked thinner.
Good luck to you-I hope you get this under control! Becky

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Thank you! I’ve experienced a little hair loss on the steroids, but I’m preparing myself for more. I hope your condition is under control!

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@vball91 My condition is as under control as it will ever be. But, i have lots of ups and downs, like when the CellCept (mycophenelate) went haywire and caused massive, uncontrollable diarrhea and I lost 20 pounds. Just awful! But I’m able to go out with my friends and do most things. I’m a lot older than you so that makes it all harder too. And I’m back to quilting so that makes me happy and helps me forget. So I’m doing OK. We’re planning a trip to the East Coast for my husband’s 55 reunion at West Point and then on to Cape Cod. I’m working hard to be in shape for all the walking we’re going to do. And I love going to West Point!
Take care @vball91 ! Will you keep me informed as you get better?

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@becsbuddy

@vball91 My condition is as under control as it will ever be. But, i have lots of ups and downs, like when the CellCept (mycophenelate) went haywire and caused massive, uncontrollable diarrhea and I lost 20 pounds. Just awful! But I’m able to go out with my friends and do most things. I’m a lot older than you so that makes it all harder too. And I’m back to quilting so that makes me happy and helps me forget. So I’m doing OK. We’re planning a trip to the East Coast for my husband’s 55 reunion at West Point and then on to Cape Cod. I’m working hard to be in shape for all the walking we’re going to do. And I love going to West Point!
Take care @vball91 ! Will you keep me informed as you get better?

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Will do - have a great trip!

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