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Promacta and Memory Loss??

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13 years 4 months ago #24936 by Court7414
Promacta and Memory Loss?? was created by Court7414
I've been on Promacta for about two and a half weeks now. Within just a few days of starting the medication I found that I seem to be in some sort of brain fog. I'm having the hardest time remembering things. I'll start speaking and forget what I was going to say. I'm losing things (just misplaced my keys and it took three days to find them). And at the end of the day I find myself struggling to remember the details of what I did earlier in the day. When I look back on the past two weeks, much of it seems like a big, fuzzy blur. The only thing I can think of that has changed in this time period is that I have started taking Promacta. Has anyone had similiar side effects or heard of anyone else experiencing the same thing? I don't remember seeing memory loss as a possible side effect, but then again, I don't remember much of anything these days.
The following user(s) said Thank You: poseymint
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 4 months ago #24947 by Sandi
Replied by Sandi on topic Re: Promacta and Memory Loss??
What are your counts?
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13 years 4 months ago #24948 by Court7414
Replied by Court7414 on topic Re: Promacta and Memory Loss??
They were 18 two weeks ago, 35 last week, and I'll find out tomorrow what they are this week.
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13 years 3 months ago #25279 by Lady Elly
Replied by Lady Elly on topic Re: Promacta and Memory Loss??
Sandi:
Does lower counts cause memory loss? My count has been 6k to 10k for past 8 months. Seems I have a lot of memory loss. Not so much in brain fog as I was when taking IVIG and other meds. I never took Promacta. Haven't had anything since Nov. 22 (IVIG). I do have bruising, tired all the time, and some loss of memory.
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13 years 3 months ago - 13 years 3 months ago #25288 by Tad Moody
Replied by Tad Moody on topic Re: Promacta and Memory Loss??
Court -

I took Promacta for over a year with no such side effects.

According to MedicineNet.com:

"Memory loss has multiple causes including a number of chronic medical and psychological conditions, trauma, medications, drug or alcohol abuse, and infections."

Probably best course is to get yourself evaluated by your doctor!
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13 years 3 months ago - 13 years 3 months ago #25300 by Ann
Replied by Ann on topic Re: Promacta and Memory Loss??
Memory loss and brain fog was one of the things listed by the woman who talked about fatigue at the conference last year. I get it with low counts.
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13 years 3 months ago #25302 by Tad Moody
Replied by Tad Moody on topic Re: Promacta and Memory Loss??
Court:

Did you have low counts before you started on Promacta, and if so, did you have the memory problems then?

For me, I get goofy and have problems thinking straight when my blood sugar gets low (hypoglycemia).
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 3 months ago #25303 by Sandi
Replied by Sandi on topic Re: Promacta and Memory Loss??
I've read that platelet microparticles can have something to do with memory loss. Those are more common in people with ITP.
13 years 3 months ago #25315 by
Replied by on topic Re: Promacta and Memory Loss??
I have been on Promacta for 2.5 years with no memory issues that I can attribute to it.
Can't say I've noticed anything during low count times either. I began Promacta after various immune suppressants had stopped working for me, count was 4k.
Or perhaps I simply cannot remember my not remembering? Wait, what was I typing about?

Now if we're talking about brain fog....Dexamethasone gives me massive brain fog.
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13 years 3 months ago #25319 by Ann
Replied by Ann on topic Re: Promacta and Memory Loss??
I don't know what people mean when they say brain fog. I just assumed it was all the same thing.
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 3 months ago #25326 by Sandi
Replied by Sandi on topic Re: Promacta and Memory Loss??
Brain fog - inability to think straight. The term fits because I actually feel like there is fog or darkness in my head. It's kind of like when you are really drugged...that sluggish, doped feeling.
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13 years 3 months ago #25548 by Court7414
Replied by Court7414 on topic Re: Promacta and Memory Loss??
Sorry I'm just replying now, I haven't been on here in a few weeks. My hematologist decided to have me come in for some tests after mentioning my memory issues/brain fog concerns. My count was 35, which isn't terrible, but not where my hemtologist wanted me to be after being on the Promacta. Since I was having these side effects she didn't feel comfortable raising my dosage, so we decided to stop it all together. They gave me a dose of IVIG and weaned me off of the Promacta. The next step for me is splenectomy. I'm still really hesitant about it, but I just don't seem to respond well to other treatments. My doctors are really pushing it because of their concerns about what I will go through the next time I get pregnant after the nightmare I just went through. I meet with the surgeon next week to discuss the procedure, then it's serious decision time.
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13 years 3 months ago - 13 years 3 months ago #25553 by poseymint
Replied by poseymint on topic Re: Promacta and Memory Loss??
This is an interesting topic for me- thanks for posting Court! And thanks Sandi for mentioning platelet particles.

I've been having memory lapses but didn't imagine it was due to Promacta. Now I wonder if it is? I've been experiencing my mind going blank more often than normal. I am about to do something or am working out something in my mind and just lose the thought. Sometimes I can mentally retrace my steps but often its just gone. very frustrating.

Its a subtle experience and easy to ignore. But after reading your post, I started paying attention. Just recently while on Promacta I heard myself recorded and my speech sounded slow dull and hesitating. Then heard another recording of myself 3 years ago and my voice was bright and speech was quick and fluent. That was really kind of disturbing. Don't know if the meds have anything to do with it, maybe I was just tired that day. Whatever I'm taking note of it. I also get some symptoms of PAD periferal artery disease(clogged arteries) in my legs.

This week I'm taking a break from Promacta and my mind seems clear and sharp. I haven't had any memory lapses. But on the other hand, my platelets are likely less than 10K- pick your poison.

If you decide to go with splecnectomy, best of luck to you! p