Hi I'm new here , have vascular dementia , vasculitis & recently on prednisolone as suspected Gca

[Stradbroke13]

Hello everyone , hoping someone can tell me that it's the side effects of prednisolone that's making me feel worse , got vibrating feeling in upper body , hot face , shaky hand & 3 hours sleep a night, finding it hard ,I'm on 35mg at the moment , was on 40mg .effects seem to happen approx 3hours after taking & lasting 6 hours & more .Thankyou in advance xx

[PMRpro Ambassador]

Yes - that all sounds very typical of higher doses of pred. It should improve with both time and lower doses - your body does have to get used to the effects. I'm sure the real GCA experts will be along later and offer suggestions for coping better.

May I ask what treatment you were on for the vasculitis before the GCA appeared?

[DorsetLady PMRGCAuk volunteer]

Hi,

As PMRpro says - it probably just your body getting used to high dose of Pred, although I can’t say I had any of them other than the sleeplessness.

The sleeplessness can be helped by an over the counter sleeping aid like Nytol - but not taken every night, just every third or fourth night to give a decent sleep occasionally.

If it’s really getting you down, then maybe you need to see GP for something more permanent - and I certainly think you need to discuss the other side effects if they are causing you stress and don’t reduce as you taper the steroids.

[Marijo1951 in reply to DorsetLady]

Can I just say that the herbal version of Nytol (which is available from the display) isn't the one that helps. You need the antihistamine version which contains Diphenhydramine and is only available over the pharmacy counter. Boots do their own cheaper version called Sleepeaze and I've been told that Tesco does a version too.

Having said that I must admit that the way I dealt with the sleeplessness was mostly to accept it and do things while I was awake, and attempt to nap a bit during the day.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

Thanks for that confirmation re Nytol - think when I used it, there was only one variation - recommended by GP. But as you say not over the counter so much as behind the counter!

Fortunately I didn’t suffer sleeplessness for very long - probably only when I was on 80mg & 60mg!

[1jamaica2 in reply to Marijo1951]

I find it difficult to sleep past 03.00,whatever time I go to bed. But,I work full time so napping is not an option most days.

I will get some Nytol and try. Thanks for the tip.

[Marijo1951 in reply to 1jamaica2]

Yes, I know that feeling - thinking that being in bed by 10 will help and it definitely doesn't. One thing I'm grateful for is that I didn't become ill until I was well and truly retired. I have the utmost admiration for people like you who hold down a job while suffering one or both of these illnesses.

[Hidden in reply to Marijo1951]

Oh, yes to admiration for those who work and cope with pmr.

[SnazzyD]

Yes, I’m afraid it can make you feel like you’ve had 10 coffees and 3 pints of Night Nurse all in one go. The good news is that it does improve as you become more accustomed to it and the dose reduces. I gave up on a full night’s sleep and napped a lot.

[Yellowbluebell in reply to SnazzyD]

Its usually you and me wide awake whilst everyone else is snoozing!

[SheffieldJane]

I recognise those symptoms. They do lessen over time especially when you begin to taper down. Do you have GCA?

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

“Suspected”

[SheffieldJane in reply to DorsetLady]

Ahh! Would be more careful.

[Stradbroke13]

Consultant wont do the biopsy because of risks ,so treating it as Gca as he says all points to that , thankyou all for your comments .I'm taking clopidogril , ramipril , provastatine , lanzoprozole & prednisolone & alendronic acid .

[DorsetLady PMRGCAuk volunteer in reply to Stradbroke13]

Do you actually need to take Alendronic Acid? Have you had a DEXA scan to prove it’s necessary.

Most people unless they have osteoporosis (and some even if they do) find that a VitD/calcium supplement (prescribed) - very often ADCAL chewable in UK - is enough to protect bones.

You are taking enough powerful drugs without taking one that’s not needed.

[Stradbroke13]

Consultant said I definitely need it ,1 tablet at once a week , I'm wheelchair bound already & also take other medications for different things too

[DorsetLady PMRGCAuk volunteer in reply to Stradbroke13]

He might have said you need it is recommended in the guidelines , but it should be based on the individual. Do you have osteoporosis or have you had frequent bone fractures?

[Stradbroke13 in reply to DorsetLady]

No , no probs with bones just the consultant prescribed it .

[DorsetLady PMRGCAuk volunteer in reply to Stradbroke13]

Well in that case, it might be worth questioning it - request a DEXA scan to see if you actually need it. Although in your case it might be required as you are wheelchair bound so obviously cannot do bone strengthening exercises like walking.

You should have been prescribed a VitD/ Calcium supplement - that may be enough to protect bones.

I took AA for 4 years without any problem (because was susceptible to osteoporosis) - but it does give some people problems - so maybe worth double checking.

[Stradbroke13 in reply to DorsetLady]

I will ask consultant when I go . I do take vit d and b12 too xxx

[SheffieldJane]

Wishing you well! You’ve got a lot to contend with. Amitriptylin 10 mgs an hour before bed, really helped me to sleep.

[Sho-Sho]

Yes, I felt just like that when put on 60mg of pred for GCA - used to take the pred at 8.0 by 11.0 I felt dizzy, spaced out and just v. unwell so used to just rest for a lot of the day. As I reduced the symptoms improved.

Do hope you begin to feel better as your body gets used to the pred, but the inflammation is also adding to the mix.

[BonnyQuine in reply to Sho-Sho]

I started on 40mg, but otherwise had similar feelings of being unwell - weak and wobbly.. That was why I originally began taking the pred before bed, around midnight - so that the worst of the symptoms would happen during the night, and I was slightly more able to cope during the day.