How's everybody?: Hi folks, I haven't been on for... - PMRGCAuk

PMRGCAuk
11,270 members20,521 posts

How's everybody?

JulianJ
JulianJ

Hi folks,

I haven't been on for quite some time.

How are you all doing?

For me, last time I was here I was just starting my dive for five. Well it didn't go to plan so I bounced up to a 7 - 6.5 reduction. Since then I have reduced to 5.5 in .5 steps. I did extend the taper by adding a second week at the new dose, just because I've been here a couple of times. SO far so good and in the new year I'll be going for 5 again.

Enough about me, what has happened to you guys?

Edit!

One thing I hadn't said, I've bought a new toy fpr my hobby, those that know what my hobby is may have an idea what i'm talking about, those that don't won't :)

31 Replies
oldestnewest

It’s good to hear from you again Julian. I could have almost written your post. These are the numbers I am struggling with too. Good luck to us both in the dive for 5 in the New Year. Such small potatoes to the doctors but we know don’t we?

Indeed, my doctor doesn't think I'm doing very well. I've had a couple of setbacks, but caught them before they became full on flares, so managed to get by with small increases.

Well it's the life we have trying to get to as low a dose as we can amanage.

J, sorry to intercept your reply to Jane: but all I would ask is: who is best at judging how 'well' you're doing on the PMR / Pred reduction Journey...? (Answer: YOU, of course!) ;-)

You are right, I tell him what I'm doing and he gives me the tablets. He has now refered me to a rhumy, but that will no doubt take months.

Greetings Julian

Nice to hear from you - I was wondering if it was something we said... (only joking) ;-) :-D

For me at least: not bad all considered. Sticking at 2mgpd Pred as a precaution during the cold winter weather after my ambitious flirtation with Pred Club Zero towards the end of last year. But, doing more / feeling better generally, and fewer / less intense episodes of the dreaded DF (Deathly Fatigue). So, I'm not worried about the race (again) to Zero. It will happen in good time.

If it's any consolation: quite a few of Us Lot recently seem to report struggling to reduce Preds further at the important sub 7.5-ish mgpd +/- Pred threshold. I remember it well from about a year ago.

But it sounds like you're getting there slowly, and with sensible adjustments in context - well done. I'm certain that the cold, damp winter weather puts greater demand on us Cortisol production-wise (but maybe the Aunties have a view on this?).

So, its On and Forwards here - and looking forward to the Spring. Shortest Day / Winter Equinox (?) on Friday so the days should gradually open up a bit. Turn the Page...

MB

5 has been my bad point, but then we are all different. On the plus side I've managed a few 2.5 mile walks, not done that for a long time, bit cold and with the rain and work not getting out every day, but I'm pushing on and looking forward to whatever is next. As for cold etc, i don't seem to find that an issue, but these dark mornings and yesterday going home at 3 it was dark, that isn't good so roll on the longer days :)

Yep Julian, I agree. We all have differing Pred reduction 'Hurdles' / sticking points depending on all sorts of things in context, and at whatever level of reduction from, e.g. a high 20mgpd to even a very low 2 mgpd - as I know.

My best guess is that these Pred reduction Hurdles can be as much to do with the Heterogeneity (variability) of PMR disease course and intensity as anything else - and despite the most careful and calculated (e.g. DSNS-style) tapering methods / doing all the 'right' things generally in the PMR context.

Main thing is (?): keep a steady head, pace yourself, try to stay positive, and be patient in the process of getting better from what really is a chronic and debilitating Auto Immune-derived illness.

As you say, the prospect of brighter and hopefully warmer days can only help in the process of feeling 'Better' generally.. as I'm sure the rest of the Population at large will agree :-D Bring it on!

MB :-)

Julian,

"Dive for 5" I love it! You can do it. I am no expert but I think the key is patience, persistence, and knowing when to raise it a notch. Congratulations on the "new toy", I do know your hobby.

JulianJ
JulianJ
in reply to enan-illuc

Yes, a small raise at the right time is so much better than waiting for a full flare. We all get used to how we feel and know when things are a little off.

DorsetLady
DorsetLadyPMRGCAuk volunteer

Enjoy your new toy. May all your lefts and rights be true!

JulianJ
JulianJ
in reply to DorsetLady

I do try to keep them true ;)

We’ve not yet met on this forum Julianj, but I am dying to know what your hobby is??

Congrats on your continued efforts to reduce your pred dose. I’m at 9.5 btw, and looking forward to getting lower, but not in a hurry.

JulianJ
JulianJ
in reply to PMRCanada

Hi,

when I joined here I thought my doctors 4 week cycle would get me to zero, how wrong I was. Thanks to all on here and the available tapers I have come up with something that works for me. My new doctor doesn't think I'm doinmg well, tough luck to him, I'm doing my stuff.

I can't say what my hobby is.

Good luck on your reductions, you'll get to a good place in time and time is something we have plenty of.

Good to see you back & posting Julian. Keep that new toy polished for the Winter weather.

All nicely polished and stored in a nice dark place. Keep it well padded when it goes out ;)

What is your toy? 🤔

I’ve just remembered the slightly controversial nature of your interesting hobby. Reply not needed to the above. I’d blanked it ha ha.

Glad you remembered and you know why I don't say what it is :)

Oh come on. Be fair. What the heck is the hobby??????

It's just something I enjoy doing :)

Private message Julianj. There was a bit of a brouhaha a while ago as the hobby can be controversial in some circles. 😉😎

Oh he is a white witch!!! Great I love that!!!

You have a good imagination!

I do! It’s a curse sometimes xx

Black actually!

Hidden
Hidden

JULIAN! So nice to hear from you!!!!! Sorry your "dive for five" didn't go so swimmingly, but take another try in 2019! Maybe you'll have better luck!

What did you buy? Was it a mint condition, 1972 BMW 2002 tii? Black with beige leather interior? Oh, no, that would have been my DREAM purchase! TELL US????

I'm down to 16.25! Can you believe it? from 80mg!!!!! The PMR/GCA has been somewhat tamed but other ailments are killing me.... ahhhhh, well we all gotta go sometime, right?

Be well my friend! ...and I hope you enjoy the upcoming holidays!!!!! xxxx

PS - or was it Teddy Roosevelt’s Double Barrelled Shotgun that sold for $862,500?

JulianJ
JulianJ
in reply to Hidden

BMW 2002, I love them as well, can't say what it is but they look so good.

No it wasn't a shotgun, don't have a license so couldn't buy it!

Congratulations on getting to 16.25, that is a huge reduction. How are you feeling not that you are down so low?

I see you live in Cardiff. Love Wales and Cardiff castle is beautiful. Best thing about welsh language is the word TOILEDAU. Lol.

I like the Welsh word for jellyfish pysgodyn wibli wobli!

I live a few miles from Cardiff, but work there.

Can't speak a word of Welsh.

Have you seen the Welsh Hotel chain Gwesty?

piglette
piglette
in reply to JulianJ

I think Gwesty is a fabulous translation for Hotel in Welsh, don’t they sometimes call it Gwesty Hotel? ie hotel hotel! I also like the Welsh word ffug for fake!

You may also like...