I'm not getting on well, but wonder if this is as good as it is going to be. 2 weeks ago I decided unilaterally to try 20 preds up from 18 (still at 2am) as I don't seem to do as well as others on a lower dose and the g p just wants me to keep reducing. There have been better mornings, but usually 2 or 3 terrible hours each afternoon. One day I tried splitting the dose but it didn't seem to help. I still manage a much better life than before I started on the preds so they must be doing something. I have no trust in Drs and my diagnosis was very delayed because of my not having raised blood markers. Luckily I have a little supply of sreroids but don't want to go any higher. I try hard to limit activity but still to swim and walk. But I don't seem to be getting anywhere!
Any suggestions please?
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spearce
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Hello, what a shame you’re still feeling cast adrift and no better. When you say you still have a grim 2 or 3 hours in the afternoon , what do you mean? How is your pain and how does it differ from prior to Pred?
Did you consider the suggestions for other Rheumies given in your last post?
Thank you for that. Yes the pain and feeling so under the weather is much like before pred, but it dissipates a bit by early evening. I did look into seeing one of the recommended rheumatologists but am afraid he will say I don't seem to have PMR so I'd better come off the steroids, which are now making life bearable.
I think I need to take the size of this problem on board more, and just weather the hellish bits. I am very aware of how much more some others here are dealing with.
Maybe your body is telling you it wants/needs a rest in the afternoons? Being on pred doesn't put you back to your previous normal - you have a new normal now and have to adjust to that.
I wonder if anyone can explain why the pain and inflammation seem to return big time in the afternoons, (then subside) though I thought the stuff that caused them only happened in the small hours, hence the recommended single dose of pred at 2am? Is it caused by the increase in activity in the mornings (very moderate) despite an afternoon nap? Splitting the dose didnt seem to work. I feel I could cope better if I had more of a handle on what was going on.
Why it peaks and then fades I don't know - and it is something that doesn't apply to everyone. A return of symptoms may happen in under 24 hours simply because the antiinflammatory effect of pred lasts between 12 and 36 hours and if you are a 12 hour person it is like the headache pill wearing off. I found that even without pred I felt better later in the day - improved blood flow possibly? Certainly warmth and gentle exercise in aquafit worked a minor miracle, as did the sauna/steam room. And a glass of wine in the evening left me feeling almost human
Remember you are ill and just by taking pred does not make you well again. You must give in to your body. If you need slightly more pred now to live a more comfortable life isn’t it better than going around feeling under the weather when you could feel a lot better?
This is almost exactly what my GP told me......you may feel better on pred but you're still unwell...
I was rather taken aback, but it's stood me in good stead since. Meds are a magic bullet....but only to some extent. If we have PMR we are chronically ill....and need to adjust accordingly. Pity!!!
Thank you. Will get the hang of it one day. But also too much resting in the day seems to make things worse, so short bits of everything seems to do the trick.x
That's exactly it!! Little and often is the answer. And NO, this is not as good as it's going to be - stick with HealthUnlocked. They've helped me enormously and and I'm not known for my patience ..............
Just hang onto that thought - It's a point we've all reached and surpassed - unfortunately this/these illnesses aren't nice and aren't going to leave us after a course of antis! BUT it does get easier eventually and why it's important to be patient - easier said than done we know - but taking thinks slowly is key now. Once you get yourself on a more even keel you'll start to feel better. xxx
I don't think this is unusual - I am 3 years down the track on steroids for GCA and still most days lie down for a couple of hours in the afternoon because I am feeling grotty - My Rheumi says it's still to do with the inflammation lurking around (I am now on 6.5mg). Very frustrating but you sort of learn to live with it and unquestionably have to pace oneself, not always easy I know.
Agree with the others; I think some of it has to do with one's body rhythm; I always feel better in the evening; don't know why. We all do have a disease; we all want to feel like we did before the disease first appeared. But that's not going to happen in the near future . If that means 20 mg Pred and a nap to feel OK, do it. As PMRPro reiterated, we have to adjust to this new normal. None of us are kids; we don't think anything of it if older folks take an afternoon nap, or people of certain cultures routinely nap. Why not us?
It's a hard adjustment to get older, and harder still with PMR or any illness. Most of us are used to working hard. But now we don't have to. Every cloud has a silver lining. Listen to your body and do what it says without feeling guilty.
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