1mg pred fatigue

[kezzybabes]

down to 1mg Prednisolone after after 15 month PMR journey (#2) and suffering fatigue made worse after I recently had a break in and car stolen. Do I increase dose temporarily or do I ride it out on 1mg for longer?

[SnazzyD]

No easy answer there. Trying to ride it out would have been my first approach. If that stress is ongoing and you need to deal practically with the ongoing fallout of the upsetting events then perhaps an extra 1mg. If it were me it would depend on how much I was being forced to not sit back and ride it out at my own pace. It would also so depend on how bad I felt, general upset aside. How would describe you?

[kezzybabes in reply to SnazzyD]

Well, tempted to ride it out on 1mg for another few weeks, take paracetamol and just …. sleep! I’ll get over shock of theft, and nice weather beckons so slowly does it. Near the end of this pred journey. 🤞

don’t want to bugger it up!

[SnazzyD in reply to kezzybabes]

If you can just rest that’s good but be alert to any slow slide downward. Be alert for creeping nausea and gut issues, light headedness and brain fog. Don’t be blinded by the golden zero gleaming on the horizon.

What is the paracetamol for?

[kezzybabes in reply to SnazzyD]

Slight pain in shoulders….

[PMRpro Ambassador in reply to kezzybabes]

Watch out - you aren't heading relentlessly to zero, come what may. You are looking for the lowest effective dose - and that slight shoulder pain COULD be the PMR reminding you it is still there ...

[kezzybabes in reply to PMRpro]

Yes that’s what I’m afraid of!!!

[PMRpro Ambassador in reply to kezzybabes]

Just don't be in denial if it is!!!!

[Polywhat1 in reply to SnazzyD]

Do you generally feel a bit worse as you decrease steroids? I am now on 2.5 mg. I’ve got pains I can manage in muscles behind my hips, some fatigue. I feel like I begin to feel a bit better then I decrease again. I’m a year from diagnosis. My GP told me to stay on 2.5 mg for 2 months.

[SnazzyD in reply to Polywhat1]

You can do but it depends what is causing it as to whether you soldier on or not. 3 things can happen and it can be difficult to sort out what at times.

1. Withdrawal that usually starts a day or so after the decrease and should calm down after a week. That can feel generally like fatigue, generally achey and out of sorts. People can have their individual signs.

2. Breakthrough of the condition which once your autoimmune activity has died down can take a week or more to start. If you have a lot of activity still it might kick in sooner. People tend to report niggles and a return to their particular PMR symptoms. You should not tough it out but consider an increase in Pred. However, over doing physical activity can cause micro damage to your Pre/PMR frazzled muscles causing delayed onset muscle pain until the muscles or tendons recover. Pred doesn’t help but ordinary painkillers tend to depending on the severity.

3. From somewhere under 10mg when the adrenal glands need to make up the shortfall of Pred for your general function, you get low cortisol symptoms. This can mean Fatigue, weakness, dizziness especially on standing up, low mood, nausea, general aches. This is much worse if you try to anything extra in the day and can leave you feeling like a deflated balloon. The only way for your adrenal glands to get back on tract is for the body to keep experiencing a low cortisol level. However, there are limits to how bad you should feel because you are balancing challenging the adrenal axis with having an adrenal crisis. The key is reducing very slowly and your GP is on the money on all 3 accounts. The other important point is to avoid pushing yourself physically and mentally if you feel like this. Otherwise you can end up in a crisis and the only way to deal with it is extra Pred. I felt like a shadow of myself for over a year but my glands finally got the message.

[Brooklyn747 in reply to SnazzyD]

Thanks for a very informative response Snazzy. Wow...a year of feeling rough, kinda says it all how very long the reduction and process of increasing adrenal function can take.A timely reminder of exercising patience, of such a virtue I sadly lack!!

[kezzybabes in reply to Brooklyn747]

Me too!

[DorsetLady PMRGCAuk volunteer]

Agree with  SnazzyD it really depends on how much the fatigue is impacting on life… but just make sure the shock of everything [and sorry to hear about that] doesn’t cause your PMR to flare… so just keep an open mind about increasing Pred. If you feel those old familiar aches and pains then stamp on them using the flare protocol. Hope it won’t be necessary, but it’s there if you need it.

healthunlocked.com/pmrgcauk...

[kezzybabes in reply to DorsetLady]

Many thanks. That link is very helpful x

[SheffieldJane]

So sorry to hear about your break-in. The shock must be awful. Personally I would treat this as a potential flare and double my dose for a week to 10 days, then go straight back to 1 mg.

[kezzybabes]

thanks - good advice.