So.....yesterday (Fri 20th Oct) my son and now DIL, were married.
I took an extra 2mgs of prednisolone the day before & yesterday, and had the most incredible day. I was even on the dance floor strutting my stuff at 11.45pm!
Just an extra 2mgs (and careful 'pacing') allowed me to embrace every moment without stiffness or pain and enjoy all the celebrations of the day to the fullest.
The rheumatologist was not happy about me doing this but the consequences of doing so gifted me one of the happiest days of my life full of joy & love and a day I'll never forget.
It pays to listen to that little voice inside sometimes.
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Kendrew
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Fantastic! Really pleased for you. I know you have been looking forward to that day for a long time.
I am a big believer in taking a small amount of extra pred for such occasions; in my case, it was usually for flying, but also any possibly stressful social evants
Hooray! I’m sorry, but my first impulse is to stick 2 fingers to them. It isn’t as if you bumped up 10mg for weeks is it? Perhaps they haven’t been in position to make the choice between a life affirming gift and a few mg for a few days knowing it isn’t supported.
That's a fantastic post so pleased for you Good for you to decide to take just that little bit more and have such an amazing day
What a shame your rheumatologist couldn't see what that day has meant to you Would he or she have preferred you to report back that you were in lots of pain and didn't enjoy the day 🤨
Oh well done in your thoughts and planning. So glad it paid off. As ever, quality of life is all. Nothing can take away the memories but something might have stopped you having them. Brilliant
That’s fabulous news Kendrew, because you listened to your intuition you now have wonderful memories of the day. Wishing them both the very best of health and happiness 🙏
What a wonderful post to start my day. Well done for owning your treatment and listening to your body- we DO know ourselves better than the docs!! Oh, and congratulations 🎊 ❤️
Your post is an inspiration and I’m so so glad you took matters in hand to make sure you were able to enjoy such a special day. Your enjoyment gives all your family such pleasure too.
As I enter my 5th year of this PMR journey your post and a friend’s attitude re pred has finally highlighted the fact that we have the means by which to make sure special occasions and holidays are managed and not spoilt. Of course we all want off pred and it’s side effects. We don’t need GPS or Rheumys to be ridged. Mine aren’t, the ridged person was me!!
I completely agree. I was definitely feeling compromised as to whether I should or shouldn't follow my gut instinct but I felt that all the advice & knowledge I've gained here really pointed to only one thing..... that increasing by 2mgs for a short period would have a way bigger advantage than disadvantage.
Me too...I love dancing . My son had a special dance with me to a Maria Carey song he loved as a little boy and I used to dance to with him on my hip. He'd organised it specially. I was so touched.Haha!... I definitely didn't have him sat on my hip this time though!!
Thats so sweet, brought tears to my eyes. Xxx when occasion happens my son is always straight over to me for music/dance as we both share such a passion for music. Rare now as he lives abroad. But you never forget.
What an uplifting post this is. Glad you had a great time. My son is getting married soon and rather than looking forward to it I have been stressing, asking myself " how will I possibly manage the whole day" This post has answered my question. I think this is the way to go and will definitely take extra. I am currently on 7 mgs and have been 'stuck' for almost 12 months. What was your original dose and did you go straight back to your original dose after the 2 days?
On the run up to the wedding I really paced myself and ensured I was eating healthily and resting as much as possible
I was on 3mgs, so on the day before the wedding I increased the dose by 2mgs up to 5mgs daily. I've taken 5mgs for a total of 3dys and today I'll reduce by ½mg daily till I'm back down to my 3mgs again.
Good on you kendrew I know they don't like it, but sometimes you have to weigh it up. I took extra when I went to Turkey this year. After having acute sciatica since January, plus my RA, I needed a good time. It worked. Enjoyed every minute, back to my normal dose now.
Congratulations and well done for taking charge of your physical and mental health needs. How unempathetic your drs was. Do they not understand how much we need these good moments in our lives?
So many replies to this, all of us applauding you! The drs themselves haven't dealt with this in their own body. The best day of your life is worth everything! We have just one life!!!
We're all facing different challenges with this condition..... some more serious than others. I just wanted to show that it can in some circumstances be possible to manage a situation like this and enjoy yourself.
It's not necessarily a foregone conclusion that you won't be able to enjoy yourself.
So pleased you had a wonderful day. Why would your rheumy possibly object to such a minimal increase. 6mg over 3 days then a small amount extra as you taper back. In the scheme of things it is absolutely nothing, but helped you so much. What was their objection - if they deigned to express it. If they couldn't come up with a valid reason (that would convince the forum) they are another pseudo-doc.
They live in a different world. I had a reasonable scepticism of docs before GCA experiences but thought they got it right more often than wrong, but now I double check everything they say.
Some of them do indeed!! Even my superb guy, possibly one of the most knowledgeable about PMR in the world besides Sarah Mackie, has his moments!!! SM suggested to me recently she might be a bad rheumy - if only she knew some of the truly bad ones!!!
That type of humility is the basis for a great rheumy. Not being an arrogant s*** should be a criterion for being accepted on medical school. Our illness is so complicated, even the best make mistakes. RH took me down the wrong path for a while, but he sorted it quickly when we realised.
As I thought. Unable to do the simple math that in the scheme of things 6mg extra is SFA. Is probably incapable of independent thought. Possibly poorly trained robot. Find a new one?
I feel very vitriolic and would love to swear, but I think HU will block me.
BtW, K, you answered a question I was going to ask re: christmas night out, so thanks. A shade extra to keep the show on the road, I think.
Can you pm me the name? Having a discussion with SM about what to do to try and improve things. Keeping patients away from that sort of rheumy would be a start!!!!!
That is such good news! So happy to hear that you enjoyed your day - I am sure it did you far more good! I don't understand some of the medics. It should be a mutual decision between the rheumatologist and yourself. Then you should have the final decision - sometimes you may have to disobey / ignore the Rheumatologist's advice. After all it was only for a few days and it worked! Such an important occasion. You always regret the things you don't do in life. It was worth the risk. Well done you and all who have advised you. After a roller coaster ride myself since June. Sometimes one step forward two steps back . Reaching depair, depression etc. I am hoping I have turned a corner (fingers tightly crossed). Good luck to you and all who suffer. I will update in the future if indeed I have turned the corner or not.
Your post has just come into my inbox (Daily Digest)! You already know how delighted I am that the beautiful day-and evening-you’d been looking forward to for weeks and months went so well. Lots of love xxx
So pleased to hear you had a wonderful day and have all those treasured memories. You’ve given hope to us all that with the right preparation we can enjoy those special days x🌸
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Pred dose doesn't seem to have worked. What would you do?
EXTRA GCA (pred side effects)
Extra pred for early morning swim
I am my own worst enemy. #flare
