Firstly I have found this site so useful ,thank you all.
My question.
I was Diagnosed with PMR in December and started on 15mg of predisolone . It had immediate positive effects but after 3 weeks I had a flare up . It was increased to 20 mg of pred for the next 6 weeks . I have since been reducing down to 17.5 in Feb down to 15 in March and then down to down to 12.5 where I am now . I obviously want to continue this pattern and minimise the use of this invasive drug .
Last week I overdid things a bit and hit a wall of fatigue which after a week has eased a little . Pacing oneself is often mentioned here and that has definitely helped .!! Thinking back a week ago is also the time I reduced to 12.5 mg and I wonder if this tapering can have exacerbated fatigue ?
Also I have a fairly important day tomorrow , and if I could reduce fatigue it would help. Should I bump up to 15 mg for a couple of days before dropping down to 12.5 again ? Or would that just mess the body around too much ?
Thank you in advance .
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Marek1
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The change in dose won't have helped - and especially if you are still on the borderline with the early levels of disease activity and inflammation. Inadequately managed inflammation does increase the fatigue aspect of autoimmune disease, which is inherent.
But I think the "overdid things a bit" is the key - you can't get away with it now, there is a new normal and one you have to accept or pay the price. Sometimes it is worth it - but you do have to remember that it may take several days to recover - and if you try to do something in the meantime, you may set yourself back again.
Someone else has just asked a similar question about a big day out to London. Yes, adding a bit more pred MIGHT help but it isn't something you should dip into on a regular basis. PMR isn't an illnesses managed just by a pill, much as we'd like it to be maybe. It is lifestyle changes and adjustments to what we do and how we do it that are key. I can get in my car, drive a fair distance, park near to the objective, do what I need to do and do the same to get home. I won;t be totally flattened by it. But if I were to do the same thing using public transport - I'd probably be needing my bed halfway!
Taking a bit more pred may make you FEEL better able to do what you need or want to do - but it won't necessarily compensate for the overdoing things. Pred manages the inflammation and relieves the symptoms that result from that - but it does nothing for the underlying autoimmune disease process which continues to attack your body tissues in the background, much like flu but long term. It is using a cloth to mop up the puddle on the floor from the overflowing bucket - but it isn't stopping the dripping tap that is causing the overflow.
It’s not necessarily the tapering per se that causes fatigue, rather the speed of tapering. If you go too quickly whether that be time-wise or dose-wise or worse still, both, it allows the underlying illness to poke its head above the parapet.
You may want to continue as you are and “minimise the use of this invasive drug”…. .but I fear you may do exactly the opposite.
Reduce too quickly and all you do is end up having to go back to previous dose (or above) and the end result is more Pred and a illness that isn’t controlled very well.
Pred really shouldn’t be taken adhoc as you suggest - although sometimes it is - better to have a restful day today, get through tomorrow, then rest again following days. That’s what we mean by pacing…
…but if it is the beginning of a flare and you do decide to go back up to 15mg, then you need to ensure everything is back under control before you reduce again, and maybe a smaller reduction from then on -1mg rather than 2.5mg. You are only a few months into your illness and you need to get a handle on it (and I know that’s not easy early days ) so maybe having a read of this link will help -
Your roughly the same age as me give or take a couple of three years, I was diagnosed ( well kinda) late January, and was put on 40mg Pred along with a load of heart attack pills. This forum is absolutely fantastic to Geta grip of what PMRGCA does. For me the fatigue is the hardest thing having been active all my life. What gets me is the upping and downing of the PRED without the Rheumatologist consent, kinda ad-oc. Take it nice and steady my friend listen to what the body's saying.
It might seem ad hoc to a relative newbie, but most people who adjust their doses do have prior permission from their own doctors to do so. ..and we do remind them to keep Dr informed.
When I changed surgeries about 18months into my GCA (and pre Covid) my new GP said -“you probably know your illness and your body better than I do so keep tapering as you feel fit -just keep me informed, and if you have any issues, call me”
PS -you might need to come home early and replace SD to the end of the season ⚽️!
Hi Marek. This sounds very familiar. As Burnley boy and I have discovered, life cannot remain the same after your diagnosis. I, too, have suffered from 'overdoing it', having previously been very fit and active. It's a big loss.
I'm sure that it's not just us men either 💪 Many of us will push the physical boundaries to start with, and suffer accordingly, before we get to grips with correct tapering using the excellent advice given by the sages on this forum.
After 6 months, I'm on 11.5mg pred but each day can be different and have me puzzling why I don't feel as good as I did yesterday. Should I tinker again? Split my dose differently? It's a rollercoaster.....
If you keep a diary of your symptoms and activities it is very likely you will find a recurrent theme - most people with the complaint of notable ups and downs do. You have a day doing more than usual, or a few days with slightly more than is good for you - and then you crash. When you crash, you are forced to rest for however long it takes - then you have a good day and the pattern may repeat if you aren't careful and avoid trying to catch up with all you didn't do after the crash,
I had the same problem. I’m now on 5 mg and my adrenals need waking up. I had to nap a lot during the day and had no energy. I’m now taking potassium capsules and stress vitamin B capsules that have helped tremendously. It took a few weeks to kick n but now I even exercise again. Here’s a picture of what I take
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