Pacing story continues...

[Tj2017]

Good morning all,

Thanks everyone who replied and read my post last week regarding pacing myself to get ready for vacation and watching my three grandkids go swimming instead of using my planned rest time. Well, here is an update.

Ouch! Not sure it would of made a difference if I had rested as planned, yet I do know for sure my disease was not happy with the stress of the packing, driving, flying, walking or really anything related to the traveling accross the east coast. (Another validation our resident experts provide sound advice, as well my hubby. Resting would of been a good decision.)

By day 2, I was seeing double and pain level had increased to 5 or 6. This was offset by my happinest at seeing everyone arrive for the family reunion. Confusion and joy was in the air. As it was the weekend and unable to reach the rhuemy, I increased my prednisone by 10 mg. This helped reduce the pain and double vision. Day 2 was a planned rest day, and now on day 4 I no longer am seeing double. Pain is much better. Today is another rest day for me and I am totally going to take advantage resting and observing my family go about their planned activities. I have a beach chair, a book and my sister to hang out with.

I will admit I was surprised by the "dragon bite" as it is often referred to on this forum. After experiencing the reduction in pain and symptoms from the prednisone, I was still surprised how quickly the "flare up" occurred and at the level. It was almost if I had stopped taking the prednisone. The GCA definitely does not like stress or pushing your body too far. It's not a question of getting mentally tougher- that doesn't help at all. I am so impressed with those of you who continue to work full time and/or are full time care takers yourselves. You have my respect and admiration.

Meanwhile I am getting lots of pictures and enjoying my family. I hope everyone has a great pain free week!

TJ

[DorsetLady PMRGCAuk volunteer]

Hi TJ,

so glad you're getting back on an even keel, until it happens you don't realise how much you are affected by too much stress!

Even thought I'm off Pred had a bit of a nightmare day yesterday - up at 4am to get to airport for 8.30 flight , which was promptly delayed by almost 2 hours. Then once everybody bar 2 were on plane - because they'd checked in and then changed their minds their luggage had to be unloaded, so we missed our slot - more waiting! Then because we were all behind my transfer was a minibus instead of car - not comfy for a hour & half drive! Shattered when finally got to destination!

So being a bit selfish and have stayed by pool in the quiet whilst the rest of the family have gone out! Trying to get legs and back feeling like belong to me again!

[PMRpro Ambassador in reply to DorsetLady]

Enjoy your lazy day - be raring and ready to go tomorrow!

[SnazzyD]

Experiencing the dragon bite certainly makes it real and you know then that it is worth the frustrating holding back on activity. If it all it took was mental toughness I'd be back at work and doing everything! Well done for resting 💐

[SheffieldJane]

Often the spirit is willing but the body is weak. I found myself sick with dizzy exhaustion and pain on a rare weekend away, just gone. This was because I had a full on day caring for my grandson just the day before ( to enable his mummy to pack and prepare for a week away with baby and toddler). Then my own preparations and long train journey with changes.

It is so frustrating having to back out of normal mum support in anticipation of this kind of reaction. I was shocked at just how knocked about I was, it was frightening. On 7 mgs now - Adrenal glands?

[Tj2017 in reply to SheffieldJane]

Yep, it's frustrating and sad. The good news is we are blessed to have them in our lives to feel the joy as well.

🌹🌹

[PMRpro Ambassador in reply to SheffieldJane]

I would think not only but also...

While the physiological dose is about 7-8mg - if you are a person who only absorbs 50% of your pred you are effectively on a much lower dose than the guy next door who absorbs 90%.

[Klah in reply to PMRpro]

Good reminder...I always forget that point...and I am the type to need "more" medication for height & weight, not less (as in anesthesia, etc).

[altywhite]

Hi Tj, good to hear you're settling down and enjoying family time. Your posts have really made me think..as we are going on a 'big' holiday to South Africa in October. It's only my husband and myself and another couple, but I do all our packing and do get 'stressed' before big hols!! I seem to remember somewhere on this forum that someone said to start the packing a week before!! Now normally I am a 2 o'clock in the morning packer but somehow I don't think that will work this year!! Soo....I am going to try this week ahead packing..bit by bit..get organised..(haha she said!!!!)! You see...it's on my mind already and we don't go for another 3 months!!!!

Enjoy the rest of your holiday.

Linda

[Tj2017 in reply to altywhite]

Linda,

Thanks for your post. I definitely recommend packing early and having a rest day before. I managed through my wonderful vacation yet it took a lot of discipline to not push myself and I still experienced a pretty significant flare. I'll be posting an up date.

Best of luck and enjoy your vacation.

TJ

[quirkytizzy]

Prednisone is definitely one of those "blessing/curses" medication. It stays in your system for a ridiculously long time (3-4 weeks) and thus can be really sensitive to dosage changes, especially sudden ones. It's usually recommended that one taper up/down on the dosage, (5 mgs week by week, either up or down), though I completely understand wanting and doing rapid changes on the dosage.

I did that myself (dropped from 15 mgs down to 5 mgs in just one day) and experienced an incredible flare from that first day on. Pain, double vision, extreme dizziness, cognitive dysfunction, nausea, insomnia and fatigue - it was astounding to me just how extreme and quickly my body responded to the change.

You are not alone in experiencing these kinds of changes when dealing with Prednisone. The good news for me was that once I got the medical facts on how to taper, the worst of the flare was over in a week. The bad news was that week was really, really hard with symptoms. Overall, though, it took just about every day of those 3-4 weeks for the effects of the dosage change to truly wear off.

I don't mean to depress you - it will be over and it'll be sooner than you realize.

My recommendation is that if you can't get to a doctor soon about the dosage changes is to rest (which were and are smart about! Resting is one of the best things you can do with a medicinally caused flare.) is to keep any changes at 5 mgs or less if you are able to break the pill down smaller.

The smaller the mg drop/raise, the easier the symptoms will be.

Your reaction to the drug is totally not your fault. Prednisone is just one of those drugs that will curbstomp anyone. It's definitely not about being mentally tougher.

[HeronNS in reply to quirkytizzy]

quirkytizzy, I am really puzzled by your description of prednisone. It doesn't sound like the drug I've been using for a little over two years at all. It should only stay in your system about a day.

[piglette in reply to quirkytizzy]

Hi quirkytizzy, have you PMR or GCA? From what you say you are not treating steroids dosage and tapering as you would if you did have PMR or GCA. 5mg drops are highly unusual and definitely not recommended under 10mg.

[quirkytizzy in reply to piglette]

Oh oooops! I just realized that this is NOT the Lupus forum! I'm sorry! I have lupus and normally post in that forum. I didn't double check to see which disease category I was replying in. It's totally possible that Prednisone does different things for different diseases, especially if they are given via drops or tablets (I was on tablets.)

[piglette in reply to quirkytizzy]

Hi quirkytizzy, with PMR/GCA you start on prednisone daily and then try and slowly taper down until the disease goes into remission which can take several years. Pred acts as an anti inflammatory as for anything. Steroids are the only thing that currently helps PMR/GCA.

[Klah]

Glad you are recovering! I have behaved in the same fashion over the last three years, over and over and over again!...must be brain fog😊