Taper and fatigue

[Southmead]

Hello,

Once again I'm going to the well of knowledge with this question. I have been tapering down from 10mm of Pred to currently 7-6 mm using the taper plan from here.

I don't seem to get the stiffnesss of the shoulders, or arms, etc. I do have the stiff joints when crouching down. What I'm experiencing is the deadly fatigue, but it's not every day. I can wake up feeling great, completely normal to have energy, and remembering what life was like before PMR. It's not everyday I feel like I have to lie down, but it seems there are more of those days, than feeling good. I forced myself to walk everyday, but its difficult to make plans when you have no idea how you are going to be when you wake up.

Should I increase the Pred again, or continue on the taper as my body adjust to the lower doses? Lastly I took ibphroen to help the headache, is that not good with Pred?

Than you for any help/advice.

[DorsetLady PMRGCAuk volunteer]

Would say it mostly due to adrenal glands needing to start working again - or at least the fatigue is -so have a look at this -

healthunlocked.com/pmrgcauk...

The stiff joints may be because you are just on the border of enough Pred and not enough….so suggest you return to 7mg for a week or so and see if that helps and then when you restart taper try just 0.5mg a time (plain white tablets can be cut with pill cutter) rather than 1mg.

A slower taper will help PMR and adrenals…. as for fatigue it’s frustrating, but you just have to rest when you need to….and have patience.

Take paracetamol for headaches not Ibruprofen - and how often do you get them ?

[Southmead in reply to DorsetLady]

Thank you, the link was very informative, those little buggers do a lot.

[DorsetLady PMRGCAuk volunteer in reply to Southmead]

certainly do!

[PMRpro Ambassador]

I think the intermittent nature makes it more likely that it is your adrenal glands struggling a bit to get going reliably. Have you tried keeping a diary of symptoms and activity? Do the bad days relate to good days when you did a bit too much? I now have very short-lived stiffness, literally a couple of minutes and more during the day after sitting for a while - I don't think it is the PMR and lower pred dose, it is just aging ...

Paracetamol/acetaminophen would be better for the headache if it works. My rheumy allows ibuprofen if I take a PPI with it but I do take the odd dose without, just use stomach protection if I need it regularly for a week or two.

[Southmead in reply to PMRpro]

I thought too it might be the adrenals struggling, and I keep meaning to keep to keep a diary. I have started one today. Thank You for your sound advice, as always!!

[123-go]

Yes, you are in 'adrenal territory' where both your medication and your actions play a big part. Frankly, it's pointless to try to taper while forcing yourself to walk every day. I imagine you wake up feeling good and then spend a good part of your day in trying to catch up with things which is detrimental to your progress.

Pacing is absolutely necessary. I write things like appointments in my diary and then work around them. If I have a busy day then on the next I limit my activity. When I have a long walk I rest a while before continuing with my day and sometimes do very little. I sit down in between tasks and don't tackle chores as though there's no tomorrow; if my plan doesn't work out on a particular day I don't beat myself up: tomorrow is another day and so is the day after and the day after that. Relax and breathe 😌.

I agree with Dorset Lady re tapering. Your body will thank you.

I would avoid ibuprofen (not recommended with Prednisolone) and instead take paracetamol. If your headache persists you should speak to your doctor.

Take care and best wishes for successful tapering.

[Southmead in reply to 123-go]

Thank you I really appreciate you taking the time to offer sound advice. I will try and modify my behaviour..

[123-go in reply to Southmead]

You CAN do it! Good luck 🤞🏼.

[piglette]

If it is the ‘deathly fatigue’ you need to tough it out and not increase. If it is PMR pain then that may mean you need to increase. Joint pain is not normally associated with PMR. Have you tried painkillers? If they work it is probably not PMR pain.

[Southmead in reply to piglette]

Fortunately the headaches are not very often. I tried painkillers in the hope it would help my fuzzy brain, of course they didn't. I will keep going on the taper and thank you for your advice..