Fatigue - PMR or side effect of Pred?

[Lyra42]

My PMR symptoms (muscle pain) started at the end of March. Extreme tiredness started on 20 May but I was in a lot of pain at that point.

I was diagnosed with PMR on 26 May and put on 15mg Pred. Pain symptoms eased each afternoon but returned each morning (taking Pred at 8am).

Last week doctor suggested increasing to 20mg but I wanted to try taking Pred at night as a first step after reading this forum. I’ve now moved in a three steps - 5am, then 2am to 11pm dose - pain much better in the morning but I’m exhausted. Also noticed that pain returned 20 hours after taking Pred.

Is the fatigue likely to be side effect of the Pred or a symptom of PMR? Or adjusting the timing of the Pred too quickly? Or just getting used to this whole thing?!

I’m returning to work on reduced hours this week. Beginning to feel that should have asked to continue to be signed off full-time...

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Think the doctor may have been correct - in that 15mg is not quite enough for you. Either that or you believed it was a miracle cure and life could return to normal..no can do I'm afraid.

Fatigue can be part of the illness, and part of Pred, but as you are still so early in your treatment I would opt for former. .. and to be honest doesn't matter what time of day you take it, if your dose is not enough, it's not enough...

I would be inclined to follow advice and increase to 20mg, or it you thinks that's too much, try 17.5mg initially... and hold off returning to work until its sorted - you'll do yourself no favours otherwise.

Also have a read through this -healthunlocked.com/pmrgcauk...

[SheffieldJane]

The fatigue is a part of the significant autoimmune disease that you have. 20 hours relief with Pred is pretty good going. I am glad that you have found a dosing solution. You know that the cytokines ( inflammatory substance) is shed by the body at around 4 am, so the 2 am dose should stop it in its tracks. I have had to alter my timings and move to coated Pred over a 6 year period, so be prepared to alter a regime when it no longer works. I really feel for you with regards to work. I simply couldn’t have contemplated it in the early days and even gave up all my voluntary work. Have a think whether a re-design of your job, hours or any equipment could help you. Your employer has a duty of care under law to help you make reasonable adjustments. Remember, you are acutely ill at the moment. Returning to work too soon will set you back.

[PMRpro Ambassador]

Since you could have switched time simply by taking the next day's dose early I doubt it is that. It may be that, even if you weren't aware of it by being fully awake, the evening pred dose has disturbed your sleep.

Another, perhaps better, option is to split the dose, taking about 2/3 early in the morning and the rest later enough in the day to carry the antiinflammatory effect over to the next morning and the next dose. This means that there is a much lower dose of steroid in the body overnight and less likely to disturb sleep. Exacty when is optimal is difficult to say but early to mid afternoon may work well.

And I do have to ask - did you try to go back to normal activity once the pred relieved your symptoms? The pred has cured nothing, it is a management strategy to relieve the inflammation and so the symptoms - the actual disease is still there, chugging along in the background and an effect of almost all autoimmune disease is fatigue of one sort or another. It's a bit like having permanent flu ... The only management is pacing and rest:

healthunlocked.com/pmrgcauk......

[SnazzyD]

I think your doctor was right to increase as it seems like you’re only just on top of it with 15mg. Your symptoms started in March so you’ve had runaway inflammation up to May. This means you have been on steroids for less than a month. It’s going to take a few weeks to get on top of the inflammation and PMR can cause deep fatigue. Pred only deals with the inflammation, it doesn’t make the autoimmune activity go away; that happens in its own time so don’t hold your breath. Meanwhile it carries on in the background, taking your resources. It also takes a few weeks for your body to get accustomed to Pred but it is for sure, quite a heavy drug at doses well above 10mg. For now it’s a case of getting a high enough dose and then lots of tlc. It’s a common mistake to become pain free and then making good use of that time or simply just doing normal things. For now it isn’t situation normal until things settle.

[123-go]

Hello, Lyra. You have received good advice here from experienced and knowledgable members. It's a lot to take in just now but please stick with the forum as the benefits are huge.I'll only add that a return to work right now will be a mistake as you'll be adding to your problems. To be honest, I doubt you'd last a week: you can't battle through fatigue. Take care.