flare up

[Missbisous]

I’ve just read the posts on flare ups and was interested to read it can be caused by being too active. I recently started swimming and joined a dance class to try and lose some of this steroid weigh I’ve put on, also changed my diet to low carbs and reduced pred to 15 from 17.5. And was feeling ok

Then - Bang - flare up - pain in temple, eye and ear and jaw so back up to 20, blood test for CRP reading and eye test tomorrow. Now feeling rubbish and shaky. Was I doing too much. ? I’m not very good at resting in the day time !!

(still waiting for appointment from GP about fuzzy feelings in legs and hands - previous post )

[DorsetLady PMRGCAuk volunteer]

Could be a combination of extra activity and the reduction. 17.5mg -15mg might be a recognised taper, but some it’s too much

Once back on track suggest 1mg a time. ..and maybe space your activities a bit better… you do need to rest -no matter how difficult it might be!

[SnazzyD]

Probably yes! I understand wanting to lose weight but with this condition and the levels of Pred needed, it often isn’t a good idea to dive into such activity like one would have done before in order to ‘fix’ issues. In the first year at least I had to be mindful of not pushing the body through too much because it was obviously dealing with the disease in the background.

Muscles and ligaments are less happy about activity, especially repetitive movements in found. If you do a reduction as well, you are making the body cope with an extra upset and you may not know whether you have muscles complaining about the exercise, withdrawal or a flare. I found over doing activity effects were delayed by a couple of days too. I’d make the drops smaller too.

[PMRpro Ambassador]

If it is any consolation - exercise has been discredited as a means to lose weight in many contexts. The extra calorie requirement for the exercise is way less than that of food and the body looks for more calories after exercise - it makes you hungry!! What exercise does is protect muscles in a diet and tones parts of the body so they may LOOK smaller.

You can lose weight without doing oodles of exercise - I couldn't exercise when I was first trying to lose pred/PMR related fat. I lost 35lbs in 18 months just by cutting carbs drastically and normal day to day activity.

And I agree with the others - it is far more likely the drop in dose was the trigger for the flare rather than doing too much in itself. Both together though made it worse.

[Missbisous]

thank you everyone. I’ll take it on board and taper by 1mg instead if 2.5 xx

[piglette]

I am an avid swimmer. I find it great as the water supports you and you can go at your own pace. The important thing is not to go for the burn!! Just the opposite. You can easily overdo things. The rest, rest, rest karma is important. How soon after your reduction did you get problems?

[Missbisous]

The very next day I got a flare up. Dropping from 17.5 to 15 as advised by rheumy but advise on here too much of a drop and I should stop by 1mg instead. If I do that is it still a month at a time or can o drop to every two weeks ?

[PMRpro Ambassador in reply to Missbisous]

No, at least 3 weeks between and preferably 4. It can take over 2 weeks to be sure that last drop was OK. A reduction rate of more than 1mg per month was found to be predictive of flare!

[piglette in reply to Missbisous]

You can get steroid withdrawal over the first couple if days or so after reducing and it should then be OK after that. You tend to not get a flair until a week or two after you reduce.

[Missbisous]

Thank you PMRpro- sound advice especially as I was on 40 mg only 4 months ago reducing every 2 weeks until 17.5 then a month til 15 !

[PMRpro Ambassador in reply to Missbisous]

It is fine to taper quickly like that - until any symptoms appear. You are doing a titration of the dose to fine the lowest effective dose, and you have started at a dose that should be well above what you will need to ensure a speedy reduction in the inflammation. Then you go down in steps until you get to the dose that JUST lets the inflammation "escape" and return to the last dose that worked. If you taper too fast once you get to near that stage, you can easily overshoot. The secret is to have smallish changes in dose and be very sensitive to the return of symptoms and not deny it.

[Blearyeyed]

It's good to keep active but changing too many things at once and not having enough balance between rest and activity will cause a flare.You probably need to be more patient with yourself and accept that it's going to take sometime before you can do as much as you did and that you may carry a little extra weight while you are getting better.

If you are still on high doses you are still in the early days.

You may feel like you've slowed down but you probably haven't slowed down enough.

We all make these mistakes at first until we learn that it's the slow and steady tortoise not the hectic hare that wins the race.

[Missbisous in reply to Blearyeyed]

Yes I’m beginning to realize this but it’s hard to slow down when I’ve always been so active ! Waiting for warmer weather and then I can just sit on the beach !! X

[DorsetLady PMRGCAuk volunteer in reply to Missbisous]

But you have to teach yourself to slow down… nit easy - but essential

[PMRpro Ambassador in reply to Missbisous]

You are not the only one - most of us had to learn the lessons too,

[Viveka]

It's fine to do reasonable exercise with GCA but at higher levels the illness is still pretty active and you are also fighting against the pred. Personally, once I was down to 15 I felt well enough to do full yoga, pilates and dance. High intensity exercise is not advised, but I think would be ok at lower levels, if someone is already v. fit and if the adrenals are obliging.

It's best to take it easy for the first five to seven days after a taper. I wouldn't do anything more than gentle yoga or walking in that period. As people have said, there is the withdrawal phase of three to five days which can make you feel rubbish but in a different way to GCA (generally tired and achy, I'd say) but can also throw in some GCA symptoms.

It's a good idea to keep a symptom journal to help you familiarise yourself with symptoms and patterns. GCA is often a tricky beast. One of the problems is that sometimes you can feel so well you think it has abated, but it hasn't - except sometimes it has...

[Missbisous]

Thank you vavika. It’s a strange illness this GCA. ! I have kept a journal since being diagnosed. Mostly to tell the consultant how I really am instead of saying yes all good I’m fine ! It’s a bit of a yo-yo with this tapering and I do get days when I’m really well and think I can do everything I used to but I think I’ll stick to gentle swimming for a while. X