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Steroids down, activity up Options
Paul Barrett
#1 Posted : Friday, June 14, 2013 1:05:30 PM Quote
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Joined: 4/24/2013
Posts: 703
Location: Hexham
The last flare put me in A&E for a few hours while they sorted out some treatment - steroids. That was 6 weeks ago.

I went down to 15mg last Friday and the symptoms started to re-emerge - my burning pelvis in particular. And then last night a potential big flare started. For me the symptoms of a flare starting are like the onset of flu (real flu ladies, not man flu). But a call to 111 got me speaking to a doctor within an hour and we agreed I should take another 15mg that evening and stay on 30 mg a day till I see my rheumy next week.

The extra 45mg of prednisolone yesterday evening and this morning has made a huge difference already and it looks like we may have headed off another major flare. My GP took bloods this morning to check CRP / ESR but she said "It's only a a tool. If you say you feel rough that's the important factor.'

Roll on Humira. It has to be soon..........

I am very impressed with the 111 service - in our area it seems to work very well. We have had cause to use it twice in the last few weeks with excellent service both times.

Off to the accupuncturist now for a blast of endorphins......
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
suzanne_p
#2 Posted : Friday, June 14, 2013 4:20:42 PM Quote
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Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Paul,

i have never taken steroids but i do know how important they are for some .. but of course we know they can't be long term especially high doses.

i hope that you have the go ahead for Humira soon, i have been on it since August 2011 and that was the one for me, although it took me quite a long time for funding as i have previously posted but it seems that funding is in place already for a lot of people now. it's one of the Postcode Lottery issue's.

hope you are feeling better after your Accupuncture.
Sheila-R
#3 Posted : Friday, June 14, 2013 6:11:07 PM Quote
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Joined: 1/29/2010
Posts: 264
Glad you managed to head off the flare Paul, but 45mg of prednisolone! You'll be dancing in the street tonight having a party, however you will feel better, I find that when I'm on a very high dose they mask the crp and esr and it apears lower than it feels and I can only sleep about 3 hours a night.

Reducing is so difficult I'm currently working on that very slowly 1/2 a mg a week by taking 10mg one day and 9 the next, it means that you have to have lots of 2.5's and 1mg tablets in stock but my GP is quite good about that.

Hopefully you've lots to do at the weekend that won't be too strenuous on the joints, and can we expect some dawn rising photos?
Best wishes
Sheila
Rose-B
#4 Posted : Friday, June 14, 2013 11:36:18 PM Quote
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Joined: 4/20/2010
Posts: 1,749
Location: Somerset

Glad you have managed to head off a flare by upping the steroids again.

I had a steroid in my bottom 4 weeks ago and even this made me much livelier
but also kept me awake

Hope your week end is pain free


Rose
Paul Barrett
#5 Posted : Saturday, June 15, 2013 5:38:18 AM Quote
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Joined: 4/24/2013
Posts: 703
Location: Hexham
Thanls all. Well here we are at 5:30 and I am wide awake! Have been for an hour.

The acupuncture was excellent. I get an immediate buzz pf endorphins that flows around my body. I needed nothing more than paracetamol yesterday. It doesn't hurt that my acupuncturist is a pretty, blonde twenty something with the most delightful Northumbrian accent. Just listening to her talk is relaxing in itself. French is the language of love? No, Northumbrian English.

My pelvis is a little painful this morning but it's a gentle simmer rather than a rolling boil.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
Anne-P
#6 Posted : Saturday, June 15, 2013 10:17:32 AM Quote
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Joined: 2/14/2011
Posts: 301
Location: South Hampshire
Hi Paul

No wonder your activity is up with that dose of steroids... I'm like that when I have the steroid infusions which is 200 mg in one go!!!

Hope the pain stays reduced now. Don't overdo it (although I always do!)

Anne Smile

Rebecca D
#7 Posted : Saturday, June 15, 2013 6:11:17 PM Quote
Rank: Advanced Member

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Joined: 12/4/2009
Posts: 242
Hi Paul

Sorry to hear you are having a rough time of painful flare ups. Thank goodness for steroids and pretty acupuncturists!!!BigGrin

Hope you hear some news soon when you can start Humira.

Best wishes
Rebecca
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