Morning stiffness

[Cgt1151]

Can anyone tell me if the morning stiffness ever goes away? I was diagnosed 14 months ago with PMR, and 2 months later with GCA. I am down to 8mg of prednisone daily. The morning stiffness is still pretty bad. I am 69 years old and try to remain active throughout the day, but by the end of the day I am pretty exhausted. Just wondering if this is what I should expect permanently.

[HeronNS]

You might need a little more pred. I'm no expert on GCA but it seems to me getting to 8 mg in just over a year from your GCA dose is pretty fast. Some also find changing the time at which pred is taken is helpful. Also, how active are you really? At first I was very active (PMR only) because I felt so much better once diagnosed and properly treated, but now I find I can't do nearly what I used to and suffer if I push too hard. Experts will be along shortly to offer better advice.

[PMRpro Ambassador]

You can manage the morning stiffness by better timing of the pred dose.

The antiinflammatory effect of pred lasts for 12-36 hours depending on the person so in anyone where it is at the lower end of the range the stiffness may reappear before the next daily dose is due. The optimum time to take the pred to minimise morning stiffness is 2am for prednisone and possibly a bit later for prednisolone (which doesn't have to be processed by the liver but is immediately active). This means the pred is at its peak in the blood at 4-4.30am which is when the new daily batch of inflammatory substances is shed in the body. This will make mornings much better although it may mean the symptoms return in the evening or overnight.

For people who then find the symptoms return at a different time, splitting the dose may be helpful. By taking the bulk of the dose in the morning and the rest later in the day it is often possible to extend the symptom relief for the full 24 hours. It may mean a bit of experimentation to find the ideal timing but it is possible to avoid having to wake in the night to take the dose.

I should add that I take a form of prednisone that releases at 2am after being taken before bed(Lodotra/Rayos) - I have no morning stiffness problems at all. Unfortunately, it isn't covered by the NHS and is relatively expensive and extortionately so in the USA! In the UK, a similar effect can be achieved using the enteric coated version of prednisolone and taking it before bed.

With such a speedy reduction of dose - were you ever free of stiffness in the morning? And at what dose did it manifest?

[Cgt1151 in reply to PMRpro]

It has been 20 months since I was diagnosed with PMR & then shortly thereafter GCA. However, I'm fairly sure I had PMR symptoms since mid 2018. Just thought it was symptoms of aging. In the last 6 months since my last post, I have had a difficult time reducing the prednisone. I am down to 7 mg. , and take a divided dose ...5 mg at 2am and 2mg at 2pm. My rheumatologist started me on Actemra 3 months ago. I do not see any benefits from it. The morning stiffness is still pretty bad. The stiffness did go away when I started the prednisone, 40mg, initially within just a few days. I cannot pinpoint when it returned but I think it was somewhere around 12mg dosing. I saw the rheumatologist 3 weeks ago and he told me to give the Actemra another 3-4 weeks, and if I did not improve he would switch me to some other biologic injection. I will be contacting him today. Just really curious if this stiffness could go on forever. Thanks in advance for any responses.

[PMRpro Ambassador in reply to Cgt1151]

Only half of patients in the clinical trials were able to get off pred altogether, the rest got to a much lower dose of pred but tended to be stuck at about +8mg.

How confident are they about the GCA? I'm surprised if you have a GCA diagnosis they are considering other biologics because tocilizumab is the only one approved for GCA - and many of them simply don't work for GCA. Or is he now thinking it isn't PMR/GCA?

[Cgt1151 in reply to PMRpro]

I had bilateral temporal artery biopsies done in April of 2020. Left artery was positive for GCA. No, he still thinks it is PMR / GCA. The GCA seems to under control. It's the morning stiffness and stiffness after any prolonged inactivity that has me concerned. The " Frankenstein" walk has returned when I get up during the night and upon waking up in the morning, usually around 6 am.

[PMRpro Ambassador in reply to Cgt1151]

That is a cardinal sign you have gone a bit low on the pred - and being at 7mg 20 months into GCA is not bad at all if you are one of the people who has PMR to go with it. I do NOT understand what he thinks he will achieve using a different biologic - and I would be asking why.

[Cross-stitcher]

It really can be worth trying different times of day to take your steroid. As PMRpro says, Prednisone and Prednisolone take different amounts of time to be absorbed from the gut and to become active in reducing he inflammation which causes the stiffness. And every patient is a bit different too - you have to experiment to see what works best for you and not just follow the "standard" programmes prescribed by doctors or rheumatologists. Personally, I have needed to take the steroid about 4-6 hours before I need to get up, to avoid morning stiffness and difficulties getting dressed etc. Other people find splitting the dose (2/3rds in the morning and 1/3rd before bed) works well for them. Try experimenting, giving each "change" a few days to see whether it helps. Once you have found what works for you, follow that pattern for a few months of tapering, but you may need to make adjustments once you get below the "adrenal dose" of about 7mg a day. Nothing can really be "set in stone".

[jarn]

I notice that you are on TCZ? Actemera helps you reduce the Prednisone more quickly when you start it. But if you have been through PMR and GCA don't think it is unusual to be fatigued. I was diagnosed Dec 2020 and in Feb started TCZ; was off Pred by August 2020. Still on TCZ for another year. Definitely still feel fatigue but gradually improving. Start the day with hikes, normal household duties before saying "all done". Am prepared to feel this way as I prefer to stay away from Pred. (I did have some terrible side effects from the high dosage).