The better I feel, the more certain I am that my memory is a thing of the past or possibly it is just on vacation. I started doing some research and found this on the internet, which I copied and pasted.
Undisclosed Side Effects of Actemra Can Be Severe
Cognitive side effects such as memory loss and difficulty concentrating are common complaints of Actemra users according to recent data. There are no warnings on Actemra for such side effects.
Has anyone else who has been on weekly injections of Actemra noticed this? Do you folks with longer-term experience think this is part of the gift of Medrol or Prednisone? Maybe a combination of both? It isn't selective memory, all of a sudden it will dawn on me that I have 'great plans for tomorrow.' I'll ask someone if they are attending a certain thing and their response is..."Yes, remember I'm picking you up." DUH! I just let folks know...the memory is history~!
How about you?🙄
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Grammy80
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Yes 😑. Though it is difficult to attribute accurately what causes memory loss in different people on different paths. On high dose it seemed like my mind was racing too fast to hang on to anything. I was the same after chemo for a good 5 years. I banned myself from walking away from the cooking hob because I would forget something was on. This improved but still I would forget words and lose my thread midway through a sentence which was very embarrassing. I started to have these drop outs terribly in the few months before diagnosis and initially with Pred it improved. When I got to the low adrenal phase it got very bad again. I’m on 0.25mg now and my adrenals are off the subs bench, but while I am so much better, it’s still not right by any means. My inability to learn information and then be able recall well worried me so much I decided to kick start my brain by learning German a month ago which is helping. I now find it very difficult to remember what people have said if there is background noise, especially speech. 3 years out of work has helped but I do feel personally something has happened that won’t be fixed and I wonder if for me my brain’s blood supply was compromised in that last hour (judging by how I was) before Pred such that some damage was done. I don’t think you’ll know for certain until you emerge from all this free of major medication and a bit of recuperation under your belt.
This drug? ACTEMRA® (tocilizumab). "Tocilizumab, also known as atlizumab, is an immunosuppressive drug, mainly for the treatment of rheumatoid arthritis and systemic juvenile idiopathic arthritis, a severe form of arthritis in children. It is a humanized monoclonal antibody against the interleukin-6 receptor. Wikipedia"
My memory MAY be failing too. Just had a disastrous flame with a business contact about paying debts. Possibly time to retire completely. Rather worried about this as my late father had the same sort of problems from his 80s onward.
Then it's just "normal" for you. When we are younger we don't worry about these things. As we get older we think we are developing the big A or D.😊 🍀 🍀
I really blame it on the meds..either Medrol or Actemra~??? I just say, "I just don't have a memory anymore", every now and then. I feel that lets me off the hook and I don't feel too bad about it. I bet I repeat myself often~, but I don't remember.
Try not to worry we all have those moments. Tberes something bubbling under and then a fool stirs the pot and its blast off. For me memory issues and blast offs are close to the surface when I am tired, no fatigued and it's the last straw.... 🎭💣💥
I agree....I am just trying to accept it as the 'new and ??improved??' me. It is strange....just no recall at all about some things. YEP, blast off~!🗼🗼
It is relatively new so please ask your chemist for a Yellow Card and fill it in and post it (it is prepaid). When new drugs are released out onto the public, because they only do clinical trials on a certain amount of people and they are not that long. The obvious ones come to light quickly. Once they are licensed for general use, then the hard work begins on finding the rest of the side effects.
The beauty of pred is that as it has been around so long, the list is 83 so we know them all.
Mind we did want to add on 'treacle brain' or ' steroid for brain', but they just smiled. So some of us sent off a Yellow Card.
If TCZ (Actemra) looks to cause the same side effect and it shows up via - the Yellow Card scheme, then it is possibly another clue for researchers.
83? Wow!! From what you wrote, jinasc, that is exactly what has happened. I read the results of the study in the NEMJ online and it was definitely targeted to see if it helped GCA, and I'm happy that it did. From what I have seen online the effects on memory have been reported by many. Then I wonder if you have a disease that is affecting blood and oxygen flow~~ memory problems are not a surprise, are they? When I've asked the Doctor if it will come back he always says we'll have to wait and see. So, I'm working on acceptance again.😉😉
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Actemra infusions approved.
~Short term memory loss 4 anyone on their PMR journey with steroids?~
Possibly new on Actemra, what should I know?
Can't get on top of this flare
