The Brighter Side of PMR: 'Thunderbirds Are GO? - but cautiously. Update on my 5-4-3-2-1 mgpd (or whatever) Pred reductions... ;-)

[markbenjamin57]

Warm Greetings to 'You Lot', whoever and wherever you are.

As always: this Post is less about celebrating my progress than sharing some 'news' - in case you can relate to, or gain some insights from it. Here goes:

If you haven't read my previous posts (I don't blame you if not..) about a recent breakthrough in my PMR symptoms despite reducing the Preds quite quickly, here's a synopsis / my latest update:

2-ish years into my PMR Journey, and having gradually reduced DSNS-style from a heady 30 mgpd initially, I've hovered at around 6mgpd +/- for the past 6 months without much let-up in low-level pain or stiffness. And.. still with frequent periods of the dreaded DF (Deathly Fatigue) despite this. Grrrr.... Miserable or what..?

Recently, and after reluctantly 'upping' the Pred dosage to 7.5 mgpd to (hopefully) alleviate the continuing symptoms, I actually felt WORSE (nausea, dizziness, general feeling of malaise) than before. My conclusion / intuitive feelings?: maybe the PMR has decided to give me a break (at last!), and / or those sleepy Adrenals are getting back to their 'normal' work. And.. maybe (?)... the side-effects of a (now?) un-necessarily high dose of the Preds, at this point, were worse than those of a (hopefully) acquiescing PMR?

So: after a relatively sudden and not usually DSNS-advised 'sudden' drop from 6mgpd Pred to 4mgpd within 6 weeks - but feeling significantly better all-round (albeit with some continuing low-level symptoms) - I'm still going strong. Yes, a little fatigue and some muscle stiffness / pain: but at a level of 2-3 out of 10 as opposed to 7-8 out of 10, as has been so frequently for the past two years. Phew....

My conclusion? As I'm sure the 'Aunties' here will confirm, there can be light at the end of the tunnel of PMR and GCA... eventually. We can't make any assumptions, even at relatively low (e.g. sub-5mgpd) Pred dosage - as I am discovering - but at least it's good to have some Hope in the meantime?

So, the end of another late and garbled message to 'You Lot' on a Thursday night from the depths of a secret and isolated location somewhere in the UK. Ohh, I give up: Weston super Mare actually

Best wishes, keep smiling on the Journey.

MB aka 'Virgil from HQ / Tracy Island'

[43tripandskip]

I'm really, really pleased for you. Congratulations!

[markbenjamin57 in reply to 43tripandskip]

Many thanks 43tripandskip. Well, not out of the tunnel yet (!) but things are looking good. The same for you, I hope..?

[Patience_1]

Great to hear positive news - and sometimes it's only necessary to see the title of the post to know who it's come from! Keep up the good work!

[markbenjamin57 in reply to Patience_1]

Ohh Patience_1, you know me too well!

Yes, positive, but fingers crossed it continues!

[Sandradsn]

Hello Virgil,

That is great news!!!!.I have also been on this incredible journey for 2 ish years and am now on 3mgs(dsns 2mgs) of the dreaded Pred.I feel like I am winning.

I still get the odd twinge and am knackered most of the time but I blame that on the long working hours I do.I had hip bursitis but that has improved now,thank goodness!!.I have managed to lose a stone and a half in weight so that has helped a lot too.

There is hope ....taking one day at a time,we can beat this....oh yes we can.

[markbenjamin57 in reply to Sandradsn]

Hi Sandra

Many thanks, I agree, PMR / GCA are quite a journey in many ways

I'm sure working full time (or at all) with PMR puts extra load on an already tired body and mind. But, as you say, many of us can usually beat this condition.. eventually.

MB

[polkadotcom]

Glad for you, MB, may it last forever!

Just coming out of a nasty flare myself. After more than six years it was totally unexpected as well as unwanted.

I now have to tame my gorilla again.

[PMRpro Ambassador in reply to polkadotcom]

That was me nearly 18 months ago - lordy, doesn't time fly when you are enjoying yourself! I think the gorilla is getting the hang of quieting down... Shhhhh!

[markbenjamin57 in reply to PMRpro]

Tame the gorilla / dragon / etc? But HOW? Someone out (or up) there must know the magic secret!

[PMRpro Ambassador in reply to markbenjamin57]

healthunlocked.com/pmrgcauk......

Read it - it is all about making peace with it and accommodating its vagaries...

[markbenjamin57 in reply to PMRpro]

Oh, ok then

[markbenjamin57 in reply to polkadotcom]

Thanks polkadotcom :-). Yep, these flares can come totally out of the blue (and conversely, they can disappear in the same way).

I like the gorilla analogy!

MB

[Hindags in reply to polkadotcom]

So confounding....to think of all the wonderful things this brilliant group could accomplish if this PMR weren't so sneaky and didn't suck us into wasting time thinking how to outsmart it.

Speaking only for myself, just when I think Ive figured out what works best for me, PMR or Pred seem to remind me who is in charge. Sometimes I feel my best strategy is just to accept that I'm just along for the ride.

[markbenjamin57 in reply to Hindags]

I think you've got it in one Hindags - better sometimes to roll with PMR than try to outwit it?!

[PMRpro Ambassador in reply to markbenjamin57]

It really doesn't work devoting energy to fighting it! Stop fighting - and use the energy elsewhere

[Jackoh]

Great news Mark- you are an encourager! With regard to your secret location- it didn't remain a secret for very long!! Best wishes Jackie x

[markbenjamin57 in reply to Jackoh]

Thanks Jackie, well, I try to share good news here for others' benefit if I can.

And I'm terrible at keeping secrets!

[Charlie1boy]

Good going Mark. Long may it continue to be good news.

Paddy

[markbenjamin57 in reply to Charlie1boy]

Thanks Paddy. As always, 'we'll see'

[DorsetLady PMRGCAuk volunteer]

Hi Virgil,

At least you've found the tunnel, and yes I can assure you there is light! One day, my friend you will find it!

Mixing programmes I know, but I'm enjoying being Lady Penelope at the moment. Off for leisurely, and maybe boozy, lunch 🥂overlooking the Med shortly. Only a paltry 26degrees today! Heigh ho, life's hard 😉

[markbenjamin57 in reply to DorsetLady]

Ah, DL, now masquerading as LP eh? I'll have to get Mission Command to check this out. Parker will probably know a thing or two...

Enjoy your hols and the sunshine there. Nearly as hot as in Costa del WSM recently

[Akino]

Hi Benjamin,

that sounds so very promising and I wish you that it works out the way you want it. Good luck, Monika

[markbenjamin57 in reply to Akino]

Thanks Monika, Let's hope! And for you too..

[Hidden]

Ha Mark, It's still not making a lot of sense to me.

I think that I am going through the same process. I am down to 5.5mg and things have changed, i.e. waking up in the morning with hardly any pains, just a general waking up slowness and I must admit I am frightened that I feel so OK. Is this the 'pride before a fall'. I have been cleaning, polishing, painting and active all day long for the past week (to get my sons flat ready to let) with just a twinge of shoulder pain which soon subsides when I rest. I still am experiencing fatigue but not to the extent I had a month ago. I haven't been able to do that for about two and a half years and as I say I am frightened that I will suddenly flair

The only real symptom I have left is fatigue, so my fingers are firmly crossed as so many have been here before.

Good luck with your rehab Mark

Pete

[markbenjamin57 in reply to Hidden]

Hi Pete, was wondering about you recently (all gone quiet..!).

Interesting comments - sounds like we're on a similar trajectory but good to know you've been more active too. I'm sure the fatigue, at this stage at least, is down to the body catching up with the pred reductions at the same time as feeling better / doing more (so, relatively more demand on the adrenals / cortisol production?). A few here seem to think the same.

As for the DF (Deathly etc), I did briefly 'hit the wall' today for a couple of hours (first time for a few weeks), but soon bounced back. A good sign, maybe?

Thanks for your thoughts, make the most of things, and keep in touch!

MB

[Hidden in reply to markbenjamin57]

Hi Mark, I think I was frightened to say anything just in case it turned out just a blip

[markbenjamin57 in reply to Hidden]

Great minds think alike Pete?

I thought the same too, but decided to go ahead and post about my 'progress' regardless. It did go through my mind that I might have to return to the forum with my tail between my legs and the Aunties saying 'Told you so' etc) but then thought it's better to share the 'ups' regardless of if they're followed by 'downs'.

That way, we can at least share notes and experiences, even if they vary from person to person.

It's ok to have a blip either way - (story of my Life!)

MB

[Hidden in reply to markbenjamin57]

"story of my Life! - me too

[Hidden]

I have got my eye firmly on that gorilla - as PMRpro indicated........ shhhhh!

[SheffieldJane]

Hi Uncle,

I am interested in para 5 where you report nausea and what not after increasing your dose to 7.5 and possibly think you are getting worse symptoms from Pred than the underlying PMR that may have actually gone. I think I am in the same boat. Although I am clearly still physically dependent on Pred, something has shifted,I feel. I am on 7 mgs, dsns method, occasional 8 mgs. I have swooning exhaustion at times, not much pain and feel a bit toxic after taking Pred.

[PMRpro Ambassador in reply to SheffieldJane]

I also feel better the days I take 6mg than the ones I take 7mg. But I've been here before...

[Hidden in reply to PMRpro]

Yes, agree, sometimes we get a false sense of security. I usually feel better the day I take a lower dose, but then it hits me a day later if you see what I mean. But the last week has been different. 5.5mg for last four days and just feel so much better. Fingers firmly crossed.

[markbenjamin57 in reply to Hidden]

Great - maybe a breakthrough for you too Pete?

[Hidden in reply to markbenjamin57]

Thanks Mark, I hope so too

[markbenjamin57 in reply to Hidden]

Yep, I'm certain that there's a physiological 'catch-up' period when reducing the preds - esp at these lower levels. From experience it can be a couple of days or more (all depending..). I think another variable in this imprecise process is how long it takes to bounce back. That must be a +/ indicator too?

[markbenjamin57 in reply to SheffieldJane]

Hi Jane

Well, that's only my take on things (nausea etc). But it does list this on chapter 6, page 127 of the list of possible Pred side-effects (!). I like your description 'toxic' - that's exactly how I felt after upping the dose, it just felt like I was going backwards overall.

It's so difficult to attribute Cause and Effect - in terms of any or all of the PMR symptoms AND the Preds / tapering process / withdrawal symptoms from such, in combination with all the other variables which can affect the process.

MB

[Suzanne457]

Hello Mark....Thank you for the reports about your good news journey with PMR . Thank you also for staying on board the Forum and encouraging the rest of us who are a little behind you. Like you and several others have indicated , I too think some of my PMR discomfort is actually more due to the Prednisone. This is just a recent discovery for me and you have helped me to validate these thoughts.

Best wishes to a very nice guy ( Calif. for bloat)

Suzanne

[Suzanne457 in reply to Suzanne457]

Oops..... should have read : " bloke" sorry Mark 😔!

Suzanne

[markbenjamin57 in reply to Suzanne457]

Got you, no worry!

[markbenjamin57 in reply to Suzanne457]

Hi Suzanne

Thanks too. But no worry, I'm not going away anytime soon (or ever, at this rate!) ;-). Well, I might be a little ahead of some here, but still 'behind' a few others!

Interesting.. a few of You Lot seem to have the same feelings about the side-effects of the Preds - and perhaps more noticeable when reducing at that critical level of sub-7-ish mgpd? I was only going on my intuition - but it seemed to be reliable (for once!).

By 'bloat', do you mean 'bloke'? Here, 'Bloat (-ed)' often refers to 'a dog that is fat and and full of gas / wind'. In that case, you're spot-on!

MB

[Hidden in reply to markbenjamin57]

Oh, You are AWFUL, but I LIKE You......shove

Sorry, can't stop it. I expect our Aunties will have a word or too! but then they have better fish to fry?

[markbenjamin57 in reply to Hidden]

Ha! One of the Aunties is on her hols so hopefully she'll be too busy to give us a grilling!

[PMRpro Ambassador in reply to markbenjamin57]

You want to watch out or you'll be toast...

[Hidden in reply to PMRpro]

I am feeling hot already, Mark must be feeling scorched

[markbenjamin57 in reply to Hidden]

Well Pete, a bit singed around the edges perhaps!

[Hidden in reply to markbenjamin57]

Ha Mark, you are now officially a 'hunky bloke', I have just announced that on another thread. No doubt you will get even more admirers

See JulieR2 input !

More stupidity from Pete

[markbenjamin57 in reply to Hidden]

Ha! As for 'Hunky'? You should see me in the mornings (not recommended for children or the faint hearted). Mind you, I am lucky to have kept pretty fit over the years. Either that or it's all in the DNA?

I don't want fame or admirers - just send me CASH instead? (brown envelopes gratefullyaccepted)

[Estellemac]

Hi just found your posts as reflected to me by Rugger. We seem to have the same outlook on this annoying blip in our journey through life. Just seen your reference to Thunderbirds. I am relatively new to the site and still finding my way around. I look forward to reading your updates.

[markbenjamin57 in reply to Estellemac]

Thanks Estellemac

[JulieR2]

Brilliant upbeat and funny as always! How fab things are going well for you too

[markbenjamin57 in reply to JulieR2]

Thanks Julie. Well, as always, 'we'll see'. Nice to read your latest post too - good to be able to see the funny side of all this!

[PiersC]

I am hoping to have one of those MBMs (I still cannot find them on eBay - no matter how hard I search.....)

- a Mark Benjamin Moment would do me well thanks!!!

[markbenjamin57 in reply to PiersC]

I'll send you one in the post Piers...(but don't tell That Lot or they'll all want one!)