Sorry also

[Uglow]

Does anyone feel like they on another planet. I feel stoned and not taken anything. Fuzzy head blurred vision on snd off, hot, generally rubbish

[2013mayo]

Hi, I think I’ve not felt myself for a long time, certainly not since being diagnosed with GCA. I generally feel tired and exhausted, my vision is very blurred, every time I take 2 steps forward I get knocked down again.

I just live in the hope it will all sort itself out eventually .

Take care

Xx

[Uglow in reply to 2013mayo]

How did you discover gca

[2013mayo in reply to Uglow]

Hi 3yeas ago I my headaches became a lot worse, my sight was fuzzy and I eventually became very ill with what I thought was chest infection, I had terrible nights sweats and lost a lot of weight. When I eventually went to eye hosp because I had black spot in my vision, I was very ill and severe headache. That’s when it was mentioned GCA, they put me on pred and then rheumatologist. Been here ever since, thank goodness for this site as everyone is so helpful, any problem you have they come up with advice of what would help.

Take care

Xx

[Uglow in reply to 2013mayo]

Go grief. Did you have pmr

[2013mayo in reply to Uglow]

Hi Not before GCA, that came later so I have both now 🙁

Xx

[SnazzyD in reply to 2013mayo]

On low doses I didn’t feel well until my adrenal function got better. Taking it really slow under 5mg is so important otherwise you feel constantly wretched.

[Nextoneplease]

Hi Uglow 😊

Well, yes I often do feel on another planet, in my case I think partly due to poor sleep…

How long have you felt like this? What meds are you on? Is the blurred vision worrying you? Think more details are needed x

[Uglow in reply to Nextoneplease]

I have small times when it’s not so bad. Blurred vision is there most of time. I’m always tired. I had chemo a few years ago it feels not unlike that. My hips and back are driving me mad so restrictive. I’m starting amitriptaline tonight from Gp. Is it normal to feel so worn down

[Keystarburst in reply to Uglow]

I was taking Amitriptyline 10-50mg at night b4 diagnosis. When I started Prednisolone I stopped Amitriptyline and found sleep difficult when started reducing. Re started Amitriptyline 10mg nightly and it does seem to help settle me to sleep better reduces 'edgeyness' side effect of steroid I think.

[Nextoneplease]

I’ve never had chemo (🤞) so can’t compare…

I can tell you though that a lot of us feel very, very tired (fatigued is perhaps the word) and this is down both to the underlying illness and sometimes to medication. I think also that having an autoimmune illness and having to constantly adjust medication dosages can be mentally and emotionally wearing…….so in summary, it’s not unusual to feel worn down.

Personally I try to combat this by eating well, resting as much as I can, and trying to find a purpose in each day, be that planting a few bulbs, arranging a bookshelf, reading to grandchildren…..whatever makes you feel better in yourself.

I do wonder whether you’ve had your eyes checked? Pred can cause blurriness at times but just in case it’s anything else, have you been to a good optician lately? They can detect all manner of things including cataracts. And you will have read on here I’m sure that if you have a distinct or sudden change in your vision, you should treat it as an emergency, especially if you also have head, neck or jaw pain.

Chin up and let us know how you’re getting on 😊

Nextoneplease x

[SnazzyD]

How long have you been feeling like this?

[Uglow]

Few days

[SnazzyD]

As it’s a relatively new thing, I’d try to get a medical opinion soon. What was your last Pred change?

[Uglow in reply to SnazzyD]

14 to 13 nine days ago

[SnazzyD in reply to Uglow]

So it’s probably not in the withdrawal zone and the dose is too high for adrenal insufficiency. Again, I’d say it’s a new feature and perhaps ought to be investigated as although it is vague it is fairly incapacitating and new.

[Nextoneplease]

Hi again Uglow 😊

Sometimes nothing can replace a personal appointment, whether face to face or on the phone. I think maybe you need a medical opinion and I think it would be a good idea to make an appointment.

Having said that, I did find the drop from 14 to 13 difficult for some reason, got really low and fatigued. I went back up to 15 for a couple of weeks and then slowly reduced again, 0.5mg at a time. Have now made it to 12.5. Doing something like this may help you - but I still think you need a medical review.

Take care xx

[Uglow in reply to Nextoneplease]

I spoke to Gp today he prescribed amitriptaline to help with pain in back I was taking tramadol but they didn’t touch it. He says just keep decreasing pred!!!

[SnazzyD in reply to Uglow]

Have you suddenly stopped tramadol recently?

[Uglow in reply to SnazzyD]

Yes but only been on for 4 weeks

[Nextoneplease]

Hopefully Amitriptyline will help 😊

Best to make one change at a time, so try the Amitriptyline and if you still feel bad in a few days, contact the GP again and reconsider the situation 😊