Early morning stiffness

[gtate1914]

Maybe this is a silly question, but I’m asking anyway. I have GCA and pmr and am on 11 mg pred. Symptoms seem to be fairly well controlled during the day, but early morning around 2 to 4 I am so very stiff. I know cytokines are being released now, but I guess everyone with pmr experiences this stiffness early in the morning and is just part of the disease cycle?

[DorsetLady PMRGCAuk volunteer]

No question is silly if it’s bothering you, but you are correct, the cytokines are released around 4am daily and cause problems.

Normal suggestions are to -

split dose 2/3rd am, 1/3rd bedtime to help with the early mornings, or

take full amount around 2am to enable the Pred to be in system when the 4am shed occurs.

With GCA the advice used to be not to split dose, but it does seem to vary nowadays. However if you are getting pains at 2am, then maybe your dose is not lasting 24hours, so in your instance the split dose might be appropriate.

It’s a matter of trial and error sometimes - so maybe try one of the options - a few days will tell you if it’s working.

[PMRpro Ambassador]

No such thing as a silly question - others may know an answer but that doesn't mean you should or must.

The cytokines are released at 4-4.30am in PMR - and many people have noticed they can get up at 3-4am and feel fine, but later the stiffness has appeared. Pain and stiffness that is present earlier in the night can be a sign of another form of inflammation so that is worth thinking about maybe - strangely, it can cause symptoms that are the same as GCA as well as PMR! But if your version of GCA includes PMR - you are down to the sort of dose where mild symptoms will reappear.

[gtate1914 in reply to PMRpro]

“Down to a dose where mild symptoms may reappear”

Does this mean my dose may not be enough? I feel I’m in new territory, while on high dosage this was not an issue. Thanks for your help! Always appreciated.

[PMRpro Ambassador in reply to gtate1914]

At high doses they are more than enough to manage PMR-type symptoms but it can emerge once you get below about 15mg. You should never feel worse at the end of a taper step than you did at the start - whether it is GCA or PMR-type symptoms. Then you should go back the last dose where you felt good and wait a bit before trying again. That is why small steps are better - if the step is big you risk overshooting the dose you need: the lowest dose that manages symptoms as well as the starting dose.

[gtate1914 in reply to PMRpro]

I guess my question is .....is it normal to have the stiffness in the morning but then it pretty much goes away later in the day only to return in the very early hours.

[PMRpro Ambassador in reply to gtate1914]

Yes if you are someone for whom the antiinflammatory effect of pred doesn't last for 24 hours or more - it ranges from 12 to 36 hours depending on the person. At high doses it can be less obvious but once you get to lower levels it is there. The inflammatory substances, cytokines, that cause the problem are shed in the body at about 4am. The longer after that time you take the pred the more inflammation has time to develop and the longer the pred takes to work.

The optimum time to take the pred to reduce the morning problems is 2am, then it is at its peak in the blood when the cytokines are shed and they never get a hold at all. That may mean the symptoms start to reappear before the next dose is due and then splitting the dose may give you a full 24 hours of minimal symptoms. A usual split is about 2/3 of the dose in the morning and the rest later in the day at a time that allows the effect to carry over to the morning. You have to experiment to find out the ideal time for you - if you take the 2/3 dose in the morning and then find the stiffness reappears in the late afternoon or early evening, the second part of the dose needs to be taken about 2 hours before that.

[gtate1914 in reply to PMRpro]

Thanks PMRpro, will try that.

[bunnymom]

I now take my pred at 2am. If I wait until 7 or so it takes me hours to feel better. I don't just feel stiff I feel sick. Didn't realize what a difference it made until I overslept the other morning. Made for a rough day. I was losing two hours every morning sitting around with heat pads waiting to feel better. So glad I changed my dosing time. Good luck to you 🥀