Priceoftides: More than brain fog. I began... - PMRGCAuk

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Priceoftides

priceoftides profile image
18 Replies

More than brain fog.

I began Predisolone late July 2023. Began on 80mg now down to 3mg and will be staying on that for a while. What I would like to hear from others with GCA if they have found problems with their brain. Not being able to find words, forgetting the subject they are talking about, mentally much slower than before and just general feeling of being ' dim'. If they have found this, does the brain return to normal or what it was before the GCA? Have others also found real problems with their skin, not just bruising but reacting to sun even with high protection sun screen. Although I am told by an optometrist my eyes are fine I more often than not have a general out of focus feeling which wears off as the day goes on. Rather a lot of questions I am afraid.

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priceoftides profile image
priceoftides
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18 Replies
Kendrew profile image
Kendrew

Others with more knowledge will be along shortly, but I've just had some extensive investigations involving a full brain & neck MRI scan and I have no evidence of GCA, dementia/Alzeimers, Parkinsons, MS, etc, so I asked what my forgetfulness and brain fog was due to.

The neurologist immediately asked if I'd heard of Pred head. He explained that prednisolone can cause all those symptoms you've just mentioned, and I wasn't to worry about it. So I'm not. It has actually improved for me, as my dose dropped.

It's well documented that steroids can cause thinning of the skin making it more fragile & more susceptible to injury. Its also more sensitive to sunlight and you may burn much more easily than normal.

You may also find you bruise more easily and wounds take much longer to heal.

My eyes also felt very similar particularly in the morning, when I was on higher doses. I'm on 1½mgs daily now and have no occurrence of that any more.

I hope this has helped reassure you, and as I mentioned earlier, other knowledgeable members will be along to advise too.

priceoftides profile image
priceoftides in reply toKendrew

Thank you Kendrew this is really helpful and reassuring now I know it is Pred head! I will try not to worry about it so much.

Timelost profile image
Timelost in reply topriceoftides

I’m exactly the same as you and Kendrew. I stared Pred in 2022 and am now on 3mgs. The first time I reduced and came right off I did it too quickly and the PMR returned so I am taking it more slowly this time. Cannot remember words….thats the worst thing and I am still like that, as well as extremely thin skin and hair loss etc. I’m hoping things will improve as I continue to reduce Pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Had you put brain fog in you post title it would have brought up loads of related posts - like this for example -

healthunlocked.com/pmrgcauk...

in which I do suggest looking at these links -

lupus.org/resources/lupus-a...

healthunlocked.com/pmrgcauk....

priceoftides profile image
priceoftides in reply toDorsetLady

I thought I had but obviously not in the right place or in capitols is that what the problem was? Thank you I will study the links you have kindly given me.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topriceoftides

I really don’t know -probably just an HU glitch -it has its moments.. not to worry.. 😊

PMRpro profile image
PMRproAmbassador in reply topriceoftides

The place for the title of your post - ideally a sentence that gives an indication of your question/comment seems to have your user name in it. Did you type it in? It happens every so often and we can't work out if it is an HU bug or people are entering their user name - which you don't need to as that comes up automatically when you post.

PMRpro profile image
PMRproAmbassador

Pred head, PMR/GCA head, autoimmune disorder head. In one form or another I suspect pretty much everyone on the forum will say yes, me.

Do you have any signs of dry eyes? Strangely, the main symptom is teary eyes - thin, copious tears that overflow, especially if it is a bit windy. This is because your eyes aren't producing the usual viscous tears that keep the surface of the eyes healthy and your body produces lots of thinner tears to try to replace them. When the tears aren;t being formed your eyes easily dry out and become itchy and scratchy and your vision can be blurred. You can get eye drops to help.

I used to bruise badly, especially my shins, and developed purpurae on my arms - since I have been at a lower dose of pred for a few years, that is all much better, I still bruise but not as badly - and I am on anticoagulant therapy too so it is a double whammy.

priceoftides profile image
priceoftides in reply toPMRpro

Thank you, I had no idea that Pred head was such a common complaint, rather strange that it seems worse now then when I was on higher doses. I do have itchy eyes I put down to tree pollen but they also run if it’s windy or bright sunshine, so I will find out about some eye drops which hopefully will help with the blurred vision. So sorry you have to put up with so much.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topriceoftides

Just pop into local opticians and ask for advice - they sell them as well -so if you find a brand you like you in future you can get cheaper online .

Hycosan and Thealoz Duo are good brands

BLEPHA also do good eyes wipes and warming masks to help.

Kendrew profile image
Kendrew in reply toPMRpro

Oh my goodness! I've learnt something else here today, about tears and prednisolone.

I've wondered on numerous occasions whilst walking on a nearby beach, why when walking into the wind, it seems to whip behind my glasses causing my eyes to water profusely. They also begin to really 'smart' to the point where I literally can't see because I cant open them!

It never used to happen, but I know why it does now!

Thanks Pro. 😃

Trovatello profile image
Trovatello

I have a similar timeline- April '23 at 60 mg to 1.75 at the moment. Yes to brain fog and a general feeling of the sun no longer being a friend to the dry skin. But for me I am also putting that down to age - 79.

Raewynne profile image
Raewynne

Haven't got as bad as that but definitely slower and now have dysphagia which they are thinking it may be from prednisolone.

Angelsmummy profile image
Angelsmummy

Yes,yes,yes,yes and yes.,Brain fog,thin skin that tears like tissue paper,so many red angry bruises on body,runny eyes,lack of concentration and not being able to retain things in brain for long.My once sharp as a knife brain has gone into hiding,takes SO long to retain info.Skin SO dry,it looks crepey on arms and legs in spite of lashing of attention to skin.When zi am out gardening,I wear a wide brimmed hat and factor 50 if I am out there for a long period.Also,Isweat,something I never did before in the sun.I could take temps. of 30 plus when in India or Africa but now,early 20s it makes me feel so very uncomfortable.Welcome to side effects of our magic pills,from a fellow GCAer!xx🐣🌷😜

JcDc527980 profile image
JcDc527980

well, all you’ve said is exactly how I am diagnosed with GCA in 2022 put on the highest dose of predisolone plus infusions I’m now down to 5mg daily. brain fog is a nightmare it’s so embarrassing when in a group and you can’t find the words I’m hoping that when I start to come down on my meds that this will improve.

Janeval profile image
Janeval

I have GCA- diagnosed Jan 2023, now on 12.5mg but i have the brain fog, forgetfulness etc- didn't know it was down to the Pred though- j was beginning to worry I was getting Dementia! It has also affected my eyes- cataracts ( had one eye done, now waiting for the other to be done), dry eyes, sore & gritty eyes, blocked tear ducts- the lot- never had any problems with my eyes before going on Pred. I also find bruises- particularly on my legs- & I have no idea when I knocked myself to cause the bruise! Yes, the side effects of Pred are far more than I realised & I am struggling to get off it. Got down to 3mg, had a big flare & am now trying again. It's good to know I'm not alone in all this & the symptons I have are quite 'normal'.

PMRpro profile image
PMRproAmbassador in reply toJaneval

Some of the effects pred is blamed for do actually develop because of PMR or GCA or age and one study by a renowned name in the field at the Mayo found that the only adverse effect that occurred more in matched cohorts of patients on pred because of PMR and not on pred was cataracts. All the rest were reported similarly in the groups. Age and other medications are to blame too.

Tescohednesford profile image
Tescohednesford

I feel your pain!With me it was walking into stuff.... I'd go to walk thru a door and walk into it..... I had bruises on bruises...

Almost everything you are suffering I have...

The only thing I can offer.....

It does lessen and improve as you take less steroids.

Wishing you lots of luck...x

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