Euphoria when starting pred..

[Funky-Butt]

Just read the booklet "Living with PMR&GCA produced by PMR&GCA uk North East. (Which is brilliant btw) . "At first you may feel quite euphoric and "high" as receptors are triggered in the ..hippocampus, but when they are all occupied, the leftover steroid makes you feel confused and affects your memory" . My OH has felt (and behaved!) like a 'new man' since starting taking the pred this last week. He's been sharp, focussed, motivated, efficient, effective, dynamic.. and its been a very welcome side effect. But now, reading its not going to last, and suddenly we both feel so dejected. How long have we got with this positivity? When's it going to start to drag him down?

[Hindags]

For me I think it lasted until 8mgs at least.

[SnazzyD]

It’s individual. I didn’t get that at all from 60mg downwards, I just felt out of control, drunk and uncoordinated. Once that bit wore off in a couple of hours I just felt weird, weak and alert yet unable to master my thoughts.This improved by about 25mg. As he feels so good, the risk is he does too much.

[Rimmy]

Hello

The 'first' impact of Pred is something people here describe in variable ways but generally at high doses it can sure be 'something else'. At first I felt like I was sitting on the engine of a jet plane and everything was zooming past me at ultra high speed - but the new energy and the relief from pain of PMR symptoms, GCA headache and face pain was really great and worth anything else for me at that point. For each of us these responses are dose related and I didn't really enjoy these feelings until I reduced my Pred somewhat - I now see we each have a place on that scale we probably feel 'best' - BUT wherever this is in the end it can't last as tapering is the name of the game and you need to always (only) be at a place which controls the inflammation you have at that time - and this you will have read about already. But any psychological positives are invaluable initially and we all need those on what is quite a long journey which will inevitably have its 'ups and downs' - as has everything in life ...

Wishing you and your OH all the best as you begin to traverse this challenging landscape,

Best wishes

Rimmy

[Daisychain12 in reply to Rimmy]

Beautifully said and diplomatic Rimmy. No one prepares us for this and it’s WRONG. I was told by a doc that patients bring him expensive champagne as they feel that they have finally got someone who will mend them. As the euphoria and other stuff wanes, fear and sadness can take over. It should be part of the discussion at the start of treatment.

[Rimmy in reply to Daisychain12]

Hi Linda

I think sometimes the negatives are not focused on initially as we basically have the 'choice' of 'no choice' - particularly if GCA is suspected. We read the possible 83 plus 'side effects' and just hope we wont get any (or many) of these. I understand the joy people might feel at the beginning as the relief from pain and stiffness is - or was for me at least - quite phenomenal and I just didn't care about anything then except my 'quality of life' - or just having a 'life'. After nearly 2 years on Pred I have a more jaded view of course as it has been (typically I know) quite a bumpy ride - but I would still make the same 'choice' again because ultimately at least at present we have no effective 'other' !

Also I must say I am 'grateful' for this drug as I suspect without it I may have lost my eyesight as my poor mother did in the 70's (undiagnosed). I am hoping in the future better alternatives might mean others don't have the negative aspects which many of us must negotiate when on Pred. Even better I hope these diseases will be annihilated completely 'one (fine) day' !!

XX

[Daisychain12 in reply to Rimmy]

Yes Rimmy to all you say. Hard to be ctoss with the marvellous pred that stopped the agonising pain yet has plunged me into depression now. I too would do the same although if I'd known what I know now I would have moved heaven and earth to push the GCA testing through quicker thus avoiding the 75/100+mg doses. It's the second time high doses pred has given me major depression.

[Rimmy in reply to Daisychain12]

Yes Linda - having to go back up to high doses is not a 'good' thing and feels so deflating apart from anything else. I am so sorry that you are having to struggle with depression like this. I just hope as you taper again that it lifts and you can see some 'sunshine' soon.

Take care

Rimmy

XXXX

[Daisychain12]

He may not plummet. Getting pain relief and support might be enough to lift his mood. Xxx

[Charlie1boy]

Hi,

As someone has already said, it's all very individual. In my case, I, too, felt great when the preds kicked in, and it was intoxicating to feel the pain subside. Reality came back to me though when I started doing all the things I was able to do before; that's when the fatigue started. PMR demands that you take it easy, and give yourself plenty of rest. Once you have learned to live with it, then life generally becomes much more acceptable. You are always going to have good days and bad days, same as if you didn't have PMR.

In my opinion, many of the stresses of having PMR are to do with expectation. You have to think long term - up to five or six years, so anything less is a bonus. The same applies to tapering pred; follow what your body tells you, and reduce only when you feel ready. There is lots of excellent advice on tapering protocols on this site, and lots of excellent advice generally.

Good luck

Paddy

[DorsetLady PMRGCAuk volunteer]

Hi,

I felt, like many others, full of life, on top of the world, free of pain for 18months. Starting dose 80mg. Could talk for England, which drove my hubby nuts at times! However because of my own circumstances (lost sight in one eye post diagnosis) it was tempered with regret about that, although outweighed by the fact that left had been saved.

About six weeks in, the sleeplessness hit, so nights were a bit of a struggle, although that phase only lasted about a couple of months.

Fortunately I had no flares, no return of any pain, and generally felt very good until I got down to 6mg - when the fatigue (adrenal glands) hit! But eventually got through that very trying period - and now been off Pred for 2 years.

This was my light hearted look at GCA/PMR- might give another insight-

healthunlocked.com/pmrgcauk...

[Daisychain12 in reply to DorsetLady]

Bless you DorsetLady. I will be reading that today with hope xxxxxx

[PMRpro Ambassador]

Ignore it (not the booklet, the feeling) and wait and see. Everyone responds to pred differently - I've NEVER had any euphoria, just pain relief and therefore feeling better. Some people do feel brilliant and a lot of doctors think that applies to everyone - but others get confused because of the excess pred. No hard and fast rule.

Of course it is brilliant, thank you - look who helped produce it

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Modest...to a fault !

[PMRpro Ambassador in reply to DorsetLady]

I know - definitely my best virtue I'd say...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Difficult to choose- you have sooooo many 🤔

[PMRpro Ambassador in reply to DorsetLady]

I'm so glad you agree - but you are a model of virtues too

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Pah.......!🤭

[Daisychain12 in reply to PMRpro]

You are both invaluable xxxxx

[Funky-Butt]

Thank you all for your words of wisdom and support. So much is becoming more clear day by day about this condition.. so many previously unexplained symptoms, many that we just didnt even really register as a symptom, like lack of focus & concentration. I think it may be less of euphoria, than being back to 'normal' (my OH has a very BIG personality! Usually very quick thinking,sharp wit and full of energy) But he'sbeen sluggish and fatigued for a couple of years.. it came on slowly without us really noticing, and may be we put it down to dying brain cells with age!

Been to GP today, and a locum has raised the dose to 60mg, which has had a positive effect on the headaches, pressure in temples and jaw ache. The PMR pain is now gone altogether (the odd sharp pain in the arm when lifting).

Rheumies on 25th Oct, Ill keep you posted.

I did have an inkling you'd written the pamphlet PMR Pro.. It really is great.

Thanks again everyone. Its so useful to read all your stories, some so sad. I have many more questions so I look forward to chatting again with another one!

[PMRpro Ambassador in reply to Funky-Butt]

That all sounds very fitting. And what sensible locum - I often say, locums aren't always bad,,,

[Daisychain12 in reply to Funky-Butt]

It's really great to meet you. Looking forward to sharing your journey and again, you are a fab wife xxxxx

[SheffieldJane]

I was a bit lively for 6 weeks, the doctor prescribed Atenolol for raised BP which seemed to put a damper on things. Some of the joy is relief from pain though, that lasts.