Alzheimer’s medication???

[Loopydroopy]

Was just told by my neurologist that my cognitive memory test was not good and he wants me to start Alzheimer’s meds. Has this happened to anyone else? I’m 51 yo, the thought of loosing my memory really scares me. If someone could share I would be grateful. Hope all is as good as can be. xoxo

[Loopydroopy]

Thank you Phillippo, great information!!

[thestorm]

Hi loopydroopy, Interesting what you posted, as I too have similar problems. My post is brain-fart, memory problems. Just to laugh a giggle, a bit, I posted a serious health symptom here, and I found you. I do wish you all the best, and thank you for your post, and for phillippo's response. This condition is very new to me and all posts are helpful puzzle pieces of our lives. Yes this journey is scary for me to. I hope you find help, support and answers here. This place is very special to many of us, and I support you in your endeavors. I will pray for you to. Sending you my peace and blessings thestormxxx

[Melba1]

Memory problems and cognitive problems are very common with lupus in all ages. They are NOT Alzheimer’s and very very rarely get worse. They will also usually improve with the right lupus medication.

It would be very unlikely to have Alzheimer’s at your age and if the neurologist has made that judgement just based on a memory/ cognitive test then I would try and see a lupus expert, certainly before starting any Alzheimer’s medication. I have failed many memory tests when the lupus is active, at the worst I couldn’t remember my dog’s name for a whole day or how to get to my boys’ school but some steroids quickly help.

Lots of neurologists do not understand about the effects of lupus on the brain and memory so they look for other (often wrong) explanations. Lupus is a far more likely explanation for you I think. Can you speak to your rheumatologist? X

[Hidden]

Hi Philippo, does it mention the side effects? Just wondering what they are.

I was just told I have brain inflammation and metal on my brain due to 2 months of hydroxychloroquine. I was told to get off it ASAP. It’s such a balance trying to decide if the risk of the side effects are worth it.

[Hidden]

I like ‘Brookie’, so no worries.

I totally trust the authority who told me to get off the hydroxychloroquine. I understand your concern, and thank you for the advice. I was given a long list of alternative holistic supplements, essential oils, etc., to replace it. Things without adverse effects. I just got back from a VaCay to visit kids out of state and came home to painters having just finished and contractors who came 2 days after I got home. All that’s finished as of yesterday and I’m putting furniture back and unboxing nick nacks, books, etc. I’ve started going back over notes from my visit with the ‘alternative’ authority, and have just started ordering things but still have a long list to order. I won’t stop the hydroxychloroquine until I have everything she told me to use and can start her protocol.

But possibly going blind, or other side effects from other meds scares the bageebies out of me!! (New word😆). My mom had gone through problems with using one med, but side effects from it made her take two more meds, then she had to take 6 more meds for those side effects, and so on. Finally nothing was helping her anyhow and her body was so worn down from all the meds it was relying on, she told her assisted living that she wanted off them all. They took her off her pills at 4pm and put her on hospice. She went to bed that night and never woke up. The memory of that, even though it’s been almost 10 years, haunts me. I don’t want to go through that.

If only we could all see the future and know what the right decisions are for us. I guess that would make life too easy, and we wouldn’t learn all the things we are here to learn. So, I must rely on my faith in God and prayer, and do what I feel I need to. I only started hydroxychloroquine after refusing meds for years, because I felt I was taking down my husband’s quality of life with mine. But, if this other protocol works (again🙏) then that would answer my problems. I have too much to do, and more to give in this life, so I am determined to not go down without a fight!! (Sorry, I don’t mean to sound arrogant).Thanks though. I do appreciate your words. My best to you.

[Paul_Howard Partner LUPUS UK]

Hi Loopydroopy ,

You may wish to ready about lupus brain fog (cognitive dysfunction) and discuss this with your rheumatologist and neurologist before starting on this treatment. lupusuk.org.uk/coping-with-...

[Loopydroopy]

Paul, thank you so much for this information. This info made me feel so much better about things and gave me the motivation to get a second opinion.