Hydroxychloriquine and brain fog: Saw my... - LUPUS UK

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Hydroxychloriquine and brain fog

Wunder53
Wunder53

Saw my neurologist on Tuesday, as I still don't tick all the boxes for lupus he has now diagnosed undifferentiated connective tissue disease and wants me to start hydroxychloriquine due to my blood results being significant... Will start these after eye test next week and receipt of his letter with Tuesday's blood results. Can anyone tell me whether these will help with the brain fog/ confusion/ forgetfulness I suffer with ( some days are better than others) ... Be good to get some insights on this... 🤔

9 Replies
oldestnewest

Hello Wunder53,

Good that you've been given a start with something that should help with your auto-immune problem. Whether it will help with the HCQ is unclear. HCQ does have anti-inflammatory and immune-modulating effects, but afaik, no-opne is quite sure how it does this. Likewise, although 'brain fog' is a common symptom of many systemic auto-immune disorders, I don't think anyone is entirely clear what causes it. From skimming through some of the past posts on here, it seems that some people have found that HCQ has helped with their 'brain fog', and others haven't. Likewise, some have found steroids have helped, others not so much. It looks as if it's a case of trying it and seeing what happens. There's a brief introductory leaflet on 'Lupus and the brain' among the downloadable leaflets on the 'Home' page here x

Wunder53
Wunder53
in reply to whisperit

Thanks whisper it, much appreciated... As you say trial and error and time will tell xx

Paul_Howard
Paul_HowardAdministrator

Hi Wunder53,

It is difficult to say for any individual whether a treatment will help with their brain fog - it depends on the main causes behind it. Certainly if your brain fog is linked to your disease activity then treatment helping to control this could help alleviate it. To read more about brain fog, please take a look at our article here - lupusuk.org.uk/coping-with-...

Will do, thanks Paul 👊

Hi Wunder53

My Rheumy suggested I take 75mg aspirin each day in addition to HCQ and after a couple of weeks the fog started to clear. I still have occasional bouts, but I am much sharper now compared to the pea-souper I used to wade around in. I too, have UCTD. Hope this helps x

Something worth checking out if the HCQ doesn't help 👍

I am curious if you have anti-phospholipid antibioties. Even low levels of these antibodies can cause weird neurological symptoms. When I was put on aspirin for clot prevention, I did notice a decrease in atypical migraine symptoms. I noticed you have had headaches in the past? How are you doing now? Topomax and Effexor has helped also. Wish you the best. Good to hear your doctors were so on top of things and got that MRI initially.

Thanks Kayhimm... Didn't have anti-phospholipid last tests, waiting for recent results to see how things are going. Still get headaches on and off but manage to control them with co-coda ill or paracetamol depending on severity. Yes, thanks to the locus GP who saw I was exhausted and sent me for routine MRI and the neurologist who suggested lupus tests I have found out early I think I have a condition that needs treating 😳🤗

Unfortunately it didn’t for me. I use other medication and treatments for it.

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