Recent pain

[kentish61]

hello all, I’ve been on 20mgs of Prednisolone since 13th Jan and was due to taper down by 5mgs according to my rheumatologist but I know that’s too big a drop so I’m going to taper down by 1mg but the last few days I’m getting pain in my hips/groin and down my legs. So now I’m not sure what to do as I was only diagnosed in Sept last year so I’m still very new to this condition. I was diagnosed with GCA and put onto 40mgs mid Sept last year and now as I said I’m on 20mgs of Pred. Is this a flair up I wonder? Any ideas what I do now? Many thanks in advance for your input.

[PMRpro Ambassador]

What have you been doing? Have you been rushing around catching up because you felt well on pred?

[kentish61 in reply to PMRpro]

I’m on a weeks holiday from work but yes I drove to my sons which is a two hour drive from me and it’s the first time I’ve done that journey so yes I was a little stressed before hand about the driving. I also looked after my granddaughters on weds while my son and daughter in law went out and then I drove back home from Buckinghamshire to Kent where I live yesterday.

[PMRpro Ambassador in reply to kentish61]

I think you answered your question!!! A lot of people find driving goes for the back of their legs - I drove over to Innsbruck and back yesterday, a 2 hour drive each way on the low road, and I was a bit stiff this morning, it doesn't usually bother me. And I didn't have childcare duties. You slept in a strange bed too - as did I as a gave my guests the double bed in my room.

If it hasn't improved - try heat and if desperate, an 800mg flooding dose of ibuprofen taken with a meal to protect your stomach if you aren't already on a PPI. And a hot water bottle is never a bad idea!

[kentish61 in reply to PMRpro]

I can’t take ibuprofen as I have a duodenal ulcer but I do take a ppi. I’m due to taper down to 19mgs of Pred next Monday but should I leave it a while until the pain is under control? I will use a hot water bottle so thank you for that idea. My arms and hands feel a little weird but I guess that’s gripping the steering wheel too tight😂

[PMRpro Ambassador in reply to kentish61]

If you can't take ibuprofen then don't drop the pred yet. Paracetamol or whatever you usually use might help but they won't have an antiinflammatory effect of ibuprofen so the pred may help though it doesn't usually make much difference to DOMS (delayed onset muscle soreness).

Are you alone at home? I find that unusual company with visitors (or visiting) is also very tiring.

[kentish61 in reply to PMRpro]

I live with my husband so just us two. I’m going to take it easy over the weekend as I’m back to work on Monday. I won’t taper until this has eased.

Myself and another lady are organising a Ashford Kent group with the help of Neelam and our first meeting is the 6th March so I’m looking forward to meeting people with this horrible condition and hopefully learning more about it. Many thanks for your help. I’m so glad I found this group.

[PMRpro Ambassador in reply to kentish61]

But no small people - and they are VERY tiring!

[Bluey-1 in reply to kentish61]

I think you’ve done too much Kentish. Stress seems to be a big issue with these illnesses and the stress of the drive, energy needed looking after the grandkids would have hit you. I am really having to work hard at pacing. I need to plan slow days prior to events and potential recovery time afterwards. Even then I don’t get it right. So unpredictable, I could be fine, I may not be. Every time we’ve met up with our son and his family I’m wiped out, often during the stay, always the day afterwards. It’s very frustrating and I have to tell myself I’m doing / enjoying more things than when I was really out of it on high dose pred after diagnosis in June. There are many more good days than bad now so things do get better even if they don’t feel so on the grim ones.

[DorsetLady PMRGCAuk volunteer]

As PMRpro has said, too much activity recently….and although it is relatively easy to reduce on higher doses, once you get to 25mg you really need to slow down - so it may be a combination of you doing too much and your dose being just a little too low.

I would stay on 20mg for another couple of weeks, and see if things settle, and then yes, 1mg a time.

However if staying at 20mg doesn’t sort things out you may need to follow advice in following link regarding flares- but hopefully that won’t be necessary….

healthunlocked.com/pmrgcauk...

..and tbh, 5 months into GCA is no time really, many flare within the first 6 months… add in working as well, you [and your rheumy] need to be more patient with your tapering.

[kentish61 in reply to DorsetLady]

Many thanks for all your replies. I will leave my dosage at 20mgs for a few more weeks. This brilliant group is a wealth of information x

[DorsetLady PMRGCAuk volunteer in reply to kentish61]

Most of us - been there, done it, got the Tshirt. .. some even wrote the book and starred in the film! 🤦🏻‍♀️ 😊