Increased Prednisolone but still aching badly ….. - PMRGCAuk

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Increased Prednisolone but still aching badly …..

Tiggy70 profile image
18 Replies

Hi, I hope someone can help me😱😱

I suspected I was having a flare of my PMR over a month ago but because I was having a second surgery on my shoulder due to complications my surgeon wouldn’t allow me to increase the steroid dose because of compromising my healing. I was also on high levels of antibiotics (penicillin) for 8 weeks. Thankfully my shoulder has now healed well but I’m struggling with bad IBS because of the antibiotics and feel I’m still definitely having a PMR flare. Last week I upped my dose of Pred from 8.5 mg to 3 days at 13 mg, 2 days at 10mg and now I’m on 9mg. I don’t think this has been enough to get me back on track. I’m not sure where I go from here? If I increase again what dose should I take and for how long? In less than a week I’m due to fly to the US from the UK to spend Christmas with my son and family. My previous flares I’ve managed to get under control quite quickly but this feels different.

Any advice would be much appreciated🌺🌺

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Tiggy70 profile image
Tiggy70
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18 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

i think you probably needed to stay at the increased dose of 13mg for longer...in line with advice in this link - I usually suggest 7-10 days but you can stay there for 14 days without prejudicing your drop back down -

healthunlocked.com/pmrgcauk...

Personally would start process again (sorry!).. and with all that's gone on in last few weeks/months this flare was never going to be as easy as previous ones to get under control.

Plus with travel (and stress) in the offing don't think you can pussyfoot about - you need decisive action...

Enjoy Christmas....🤶❄️🎄

Tiggy70 profile image
Tiggy70 in reply to DorsetLady

Thank you for your reply. Looking back to last week I can see that three days on 13mg wasn’t enough. I hate increasing the steroids as it feels so counterproductive after two+ years of trying to reduce - needs must I guess. I’ve just taken an extra 2mg as I’ve got worse as the day has gone on today making 11mg today (and it’s my birthday). I’ll then increase to 13mg tomorrow and stay there for a while until things improve.

I hope you have a Lovely Christmas too 🎄🥶🤶

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Happy birthday!

A short increase in pred dose is often more likely to avoid a proper flare and return to a higher dose, The fact you needed more shows that things aren't under control yet - and you do need to consider that maybe the underlying disease process is protesting at something - stress (including the excitement of the trip) or the weather are also potential culprits.

Tiggy70 profile image
Tiggy70 in reply to PMRpro

Thanks. Birthdays and me don’t seem to be going too well. 2020 my meal out was a Macdonalds drive thru because of Covid. In 2021 we had to cancel our trip to the US to visit our son because of Covid numbers and today our daughter and children will have to cancel coming this weekend as she has tested positive for Covid today! We haven’t seen them since last August. With all the strikes and doom and gloom who wants to live in the UK at the moment 😫. You are far better off in Italy!!🇮🇹

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

That's why I'm still here - far too much to lose in healthcare above all! A (very) little bit of me would like to come back I think but can't face it to be honest. The weather above all - a cheeky little -17C this morning and never got above -6C but the trains were on time and the road and pavement clear. And not a breath of wind.

Sounds a bit like my 70th in the summer - couldn't find anyone to come for a drink with me (all working or don't drink). Was marginally better than OH's 70th the year before - he was in hospital and I couldn't visit with Covid rules.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Tiggy70

Happy birthday -not that it probably feels like it!

You can always take an extra couple tonight if you want … and hope it works for you.

I know it’s frustrating having to increase, but usually it’s the only way to get your illness back under control 🌸

Tiggy70 profile image
Tiggy70 in reply to DorsetLady

Thank you. We have got a nice meal out booked for 7.15 so hopefully the day won’t be all doom and gloom 🌸

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Enjoy!!!

Evercurious profile image
Evercurious in reply to Tiggy70

Happy birthday🎉 Hope you have a lovely time with your son and are able to celebrate both occasions.

Tiggy70 profile image
Tiggy70 in reply to Evercurious

T hank you 🌺

Gossiplady profile image
Gossiplady in reply to Tiggy70

Hi Tiggy! Just to say not only do we share this awful disease, but our birthdat too. So happy and healthy birthday and forthcoming year to both of us. Xx

Tiggy70 profile image
Tiggy70 in reply to Gossiplady

Hi, I hope you had a lovely birthday. Yes, let’s hope that 2023 is a good year for us x🌸

piglette profile image
piglette

I normally increase by 5mg for a week or so then drop down around 3-4mg once the PMR has been hit on the head.

Tiggy70 profile image
Tiggy70 in reply to piglette

Thank you. I guess I’m impatient and wanted to feel better quicker lesson learnt! 🤗

PMRpro profile image
PMRproAmbassador in reply to Tiggy70

Just remember, More haste, Less speed ... Tortoises win races!!!!

Tiggy70 profile image
Tiggy70 in reply to PMRpro

point taken! 🐢🐢

PMRpro profile image
PMRproAmbassador

Three days at plus 5mg is not enough - you need at least the week we suggested before and up to 2 weeks - especially after all this time. You could stay there a bit longer but then you would have to drop back to a lower dose as you just did with a bit of a taper.

Tiggy70 profile image
Tiggy70 in reply to PMRpro

Thank you for your prompt reply and advice. I’m going to up my dose again tomorrow and stay there until I feel better which will probably include the day I fly to the States and a bit more. I’m feeling pretty low at the moment but have to remind myself that there are so many people in the world suffering with far worse issues. Thanks, Tiggy🎄🎄

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