Do any of your meds give you the ☺️ HAPPIES?

[EOLHPC]

Hello all.

I've been enjoying the big benefits of a prednisolone taper (relatively low dose: 4 weeks, dropping from 10mg during the first week). As usual, the benefits have been fab, and one of the best is simply feeling really HAPPY more of the time. When I started on daily hydroxy nearly 5 years ago, I felt the HAPPIES come on @ a simmering level...then the HAPPIES flooded in @ a higher level with my first pred taper a year or so later, and, when I started daily myco nearly 2 years ago, myco sort of helped me land on a kind of HAPPINESS plateau...until immunology investigations meant stopping hydroxy for 4 months: my HAPPIES level slipped down a bit. But now I'm back on both daily hydroxy & up to 3 X 4wk 10mg pred tapers per year again: the HAPPIES are up again...am feeling better generally (well, of course, am beset by the usual symptomology...life style managing agogo but at a more reasonable level)

So, am wondering about your experiences of meds giving you the HAPPIES....I know I'm not alone! Hoping you'll tell us about your versions of this...

[cuttysark]

Hi BC ,

Maybe "the Happies" (love your name for them) is simply an innate joy of being alive that for folk with those life ruining diseases we suffer, are denied most of the time.

Suddenly you feel a bit better and can connect again with the world and feel happy again.

Rejoice in it while it is there, and at least in the bad times you know it might be just round the corner.

C xx

[EOLHPC in reply to cuttysark]

Oh my, cuttysark: I LOVE this idea: am going to follow your advice: many thanks👏👏👏XO

[littleeffie]

Morning barnclown,

"The Happies" love it ,saw the post and couldn't help but smile.

I don't think any of mine do that except for when the pain eases and that's a better feel.

Mind you I do have to be careful as I have adverse reactions to things like certain anaesthetics ,certain ones can have me giggling and laughing hysterically. First time was on the way to theatre which ended up with surgeon giving up and sitting laughing with the other staff as it made me awake ,really, really awake and silly,tears strea!ming and giggling my head off,couldn't have op and five hours later my jaw,neck and ribs aching ,put in side room,finally settled but couldn't sleep for 36 hours.

I hope to read of others Happies as it sounds good hearing of people having better feelings.

Have a great day and hope tomorrow goes well.

Effie x

[EOLHPC in reply to littleeffie]

GRRREAT reply effie: thanks👏👏👏. And hey: I'd been thinking it was really odd that every time I go into an operating room everyone involved gets the giggles including me❗️❗️❗️ I can't find the words to let you know just how FAB it is we have this in common. Wishing you all the best luck possible finding the treatment plan that gets your HAPPIES going🍀 XO

[Hidden]

Not sure about the happies although a great term😊

Does it count if I'm happy to be able to take a drug without having any side effects - listed or otherwise? If so not getting a dry cough so far from Ramipril is great and on this score I've got the happies - helped by the sight beech trees in the autumn sunshine x

[EOLHPC in reply to Hidden]

YES👏👏👏👏all that definitely counts❗️😘

[Hidden in reply to EOLHPC]

PS - re drug that gives me the happies - Zopiclone 7.5mg! The next day (I only allow myself to take one or two a week as prescribed) I'm awake and much calmer for having had a good sleep. X

[EOLHPC in reply to Hidden]

HURRAH for twitchy & HURRAH for zoplicone🎶🎶💃💃👏👏

[foxglove in reply to Hidden]

Agree!!! anything that gives a good sleep makes all the difference.

[EOLHPC in reply to foxglove]

👍👍👍👍👍👍👍👏👏👏👏

[babssara]

Oh Barnclown what have you started? Your very own band of HAPPIES me included, long may we thrive!!!!!!!! xxxxxxxxxxxxxxxx Babs

[EOLHPC in reply to babssara]

HURRAH🎶🎶🎶💃💃💃😘

[misty14]

Hi Barnclown

As always from you a very interesting question. Depression or feeling low is common with these illnesses either because of the inflammation or just because they're difficult to deal with!. Steroids or our other drugs work on that inflammation and so make us feel spiritually uplifted and better My Rheumy has just said steroids can also give an artificial high on their own and he isn't 100% sure I have inflammation because it doesn't always show so says I would feel better anyway!. Difficult.

Hope the Happies keep coming, love the expression!. X

[EOLHPC in reply to misty14]

👏👏👏👏Many thanks misty: I just LOVE it when you share what your rheumy says: he seems to me one of the wisest & best at interpreting our sort of immune dysfunction in a positive and deeply wise way.

My feeling is that EVERYTHING in life is a 'pie chart' composed of different sized portions...sometimes we come close to labelling each portion...but often big ? marks remain. Seems to me that any medic who doesn't acknowledge this essential mysteriousness of these matters (I.E. any medic who claims to be 100% sure of stuff as complicated as this immune dysfunction stuff) is bluffing (consciously or unconsciously)😤

OOPS: shall step down from my soap box NOW

XOXO😘

[Hidden in reply to EOLHPC]

Just to add to what Misty is passing on of rheumy's wisdom - which seems interesting and reasonable for some. However steroids don't make me happy of themselves at all. They make me jumpy and a bit bipolar/ twitchy - which isn't the same as happy. The aspect of them which makes me happier is the way they reduce pain and inflammation. I will not give doctors an inch on this point now in case they try and tell me that all my problems are psychosomatic.

Steroids also make me insanely hungry - which in turn makes me put on weight - which gives me the complete opposite of the happies!

[EOLHPC in reply to Hidden]

Am with you on this twitchy: so far my max pred dose is 10mg...and even on that my bipolar symptoms flare (BP runs in my mother's family...I manage mine ok thanks to years of therapy). So I make sure my medics remember that I'm a prime candidate for steroid induced psychosis!

But when I really need the benefits pred gives me, oh boy am I ready to manage pred probs. For me, myco gives almost as good as pred, but my relatively low dose 10mg pred tapers do pack the extra punch I need when my relatively low 1000mg daily therapeutic myco dose just isn't quite man enough.

Having to keep up this constant treatment plan fine tuning thing + the continuous risk benefit assessment thing (argh: that steroid- munchies weight gain business😖) doesn't give me the HAPPIES, but when I get the balance right the HAPPIES do hit home☺️

[babssara in reply to EOLHPC]

The last few responses have had me thinking about my situation and how it has been over the past month or so, I thought I was going mad, and I mean really mad, bad enough that my family thought I needed psychiatric assessment. My GP suspected "steroid induced psychosis" which, rheumy nurse confirmed. Over the past mont I have been up and down, really ill, urgent care attendances, and steroids increased or decreased. My mind didn't know where it was, mad on 60mgs, so told to come down to 40, symptoms returned told to increased to 60. At Rhuemy Nurse appt last week said I need to be on 20mg and let my body adjust to the reduced dose. Ive really struggled, shaky, mad, irritable etc. When I saw Consultant yesterday he was very reassuring. Told me I am not mad, steroids are addictive and should be weaned off slowly but in my particular case I was on far to high a dose at 60 and it is the right way forward to bring straight down to 20. He said what I am experiencing this week at 20 if like if I was coming off heroin or something and getting withdrawal symptoms. He said as the days and dose pass my withdrawal will lessen as my body and mind adjust to 20. He said one I reach that stage he can start reducing by 2.5 every week - he said ideally I should be on 10 and that is what we are aiming for. He said 10 might be too low but they need to find the right dose for me to allow me to function relatively pain free. Hope this may give others a few answers. It certainly has put my mind (and my family) at rest. Thanks for reading. Babs x

[EOLHPC in reply to babssara]

this is a mega nightmarish ordeal you're describing😖. it's so important we're all aware of this sort of thing. many many thanks, babs, for giving us the run down. i am hugely grateful!!!! 👏👏👏👏over the past 30 years, i've observed my vvvv unstable sister in law reacting this way to high dose steroids for her early onset crohns...fortunately my husband copes like a little sweety with high dose steroids for his early onset crohns. this predisposition to proper SIP seems to be a very individual matter...and I know I'm predisposed to SIP. as ever, am wishing you every ounce of possible good luck and sending you lots of love ☺️XOXO

[misty14 in reply to Hidden]

Hi Twitchy

Just want to say that I too don't get the high that my Rheumy talks about. I feel better when the pain and inflammation subsides. There are times when my Rheumy makes me feel there's nothing wrong with me which can be hard to deal with!.

Hope you feel more settled in your new home. X

[Hidden in reply to misty14]

Thanks for asking Misty - we are loving being here in north Fife - weather and Autumn trees all stunning and both of us are full of creativity.

I know just what you mean about being made to feel as if nothing is wrong. Mind you I can do that all by myself to myself without the health professionals joining in! Tx

[misty14 in reply to EOLHPC]

Hi Barnclown

Lovely way of looking at this tricky aspect of our illnesses!. Hope your as well as can be. X

[Penelope-Mary]

Just read your Buzz feed link: good find!Barnclown

I've just tapered Pred by adding Arava, down to 5 from 20 in 6 weeks and I LOOK different ' happies' there for sure 😆. 🎉🎊🎈🎊🎉

[EOLHPC in reply to Penelope-Mary]

HURRAH❗️❗️❗️❗️❗️❗️💥💥💥💥💥💥😍😍😍😍

[nanleighh]

I get a wonderful sense of well being when I increase the prednisone. But when I taper it super fatigue. I do want the happies though. Hope I get them soon☺️

[EOLHPC in reply to nanleighh]

I hope so too, nanleigh ☺️

With chronic illness, these HAPPIES can be very elusive, shy creatures... I tend to over react when one snuggles up to me....it's a kind of manic delight: I feel driven to max the delight while I can

It's tough. Yesterday a lupus friend told me she starts 20mg pred with the SUPER HAPPIES, but within 2 weeks of that daily she crashes. When I do my 4 week 10mg tapers, I've got the HAPPIES until the last week on 2.5mg when some of the aching surfaces and I start thinking about what things will be like next week (my migraines flare when I'm withdrawing from pred)

XO🍀🍀🍀🌻

[Penelope-Mary]

Hello all, I never write when I'm down but the happies have wandered off.

Just needed to re read these wonderful contributions

💐

[EOLHPC in reply to Penelope-Mary]

👌👍👏😉🌻🍀

[USAhousewife]

What is Hydroxy? I love my Prednisone, too. I dont get enough of a boost to call it the Happies, But, on the other hand, I def get the "Broke Downs" and yes, the "Bitches" when I am not on it. It's not like when I was on HRT, and sons would take me to Dr office and tell him to give me a shot! I just feel like crap, every joint in my body stiff and sore. Who ever knew you have a Bursa just beneath your collar bone?

[EOLHPC in reply to USAhousewife]

Great reply: I like this: the BROKE DOWNS....👍👌👏

And I'd love to hear the tale of how your dr/s finally figured out you have bursitis of the collar bone! Took me 7 years to force my dr/s to figure out I had bursitis of one forefoot joint!

Hydroxy is a UK nickname for hydroxychloroquine. And in the UK Drs tend mostly to prescribe prednisolone (nickname pred) rather than prednisone...so far I haven't been given a straight & convincing explanation for this difference (they are vvvv similar, but, as I understand it, metabolising prednisolone is slightly easier on patients...or something)

🍀🌻