Advice Please

[Patricia10]

I was diagnosed with PMR 4 weeks ago, supported by elevated inflammation levels in blood tests. I think I first had symptoms as long as four months ago. It started with flu type symptoms one night, then the following morning pain around the whole hip and thigh area and had difficulty walking. A few weeks later developed pain in neck arms and shoulders. Really severe pain down forearms. Then I went to the doctor who put me on 15 mg of pred. The problem is that I am still having real problems on waking and in the mornings, I struggle to walk, the pains in my neck and arms are still bad, but better than before I started the steroids. It takes till about 11am to 1pm for me to feel relief, then I can get on with my day normally. I am like a different woman I the afternoons and evenings. I read that the steroids completely take away these painful symptoms in other people. Can anyone give me any advice here. This is really getting me down. I am 65 and was really well and active before this hit me.

[DorsetLady PMRGCAuk volunteer]

Hi Patricia, sorry about that! As I was saying, sure you will get more knowledgeable answers, but the Pred doesn't always take away all pain, and as you feel better in the afternoon then it would suggest it is working.

You might be better suited taking the Pred, or part of the dose when you go to bed, and the rest when you wake up, that should then help the early morning pain, stiffness etc. Some people, me included now I'm down to a low dose, take it if they wake during the night. If I go to loo any when between 2-6am then I take my tablets with a drink and half a ginger biscuit (that works for me) but losts of people take it with a spoonful of yogurt. Your body would normally produce cortisol about that time, so it makes sense to try and copy natures way. It's worth a try anyway, anything to make life better is worth a go.

If that doesn't work then you need to speak to GP again, but hopefully it should.DL

[Runrig01]

If the steroids are helping once they have kicked in, maybe it would be worth splitting the steroid dose. Maybe take 10mgs in the morning, and 5mgs early afternoon. The length of time steroids remain effective is between 18-36 hours and each person is individual. It sounds like your at the lower end and that would explain how you feel in the mornings. Splitting the dose would ensure there is always some Pred in your system.

The other option would be setting your alam early and taking your Pred with some milk, then go back to sleep till they kick in. Hope you find a solution 😃

[Celtic PMRGCAuk volunteer]

Patricia, wouldn't it be so wonderful if steroids were to "completely take away these painful symptoms", but only a very few lucky people actually achieve that happy situation. We can expect around a 75% reduction in our pain levels within days of starting steroids, sometimes within hours. Your experience of pain on waking and for the next few hours is not at all unusual, and is, in fact, similar to my own experience where I found I could tackle so much more in the late afternoon. It simply means that the effect if the dose of steroids you are taking is not lasting until your next dose. Although it is recommended to take our complete dose as early in the morning as possible, as both DorsetLady and Runrig have suggested a few people have found it can help if they split their dose, say two-thirds in the morning and a third in the evening. Perhaps you could give that a try?

[Patricia10]

Thank you so much for these comments. So helpful to discuss this with someone else with these problems. I will speak to my doc about splitting the dose. Last time I mentioned this she said taking any tablets in the evening stops you sleeping. Do you think I should suggest increasing my pred to 20mg?

[Celtic PMRGCAuk volunteer in reply to Patricia10]

It is true that there are a few people who need a slightly higher starting dose of 20mg, especially those who are considerably overweight.

Yes, Pred at the higher dose can disturb our sleep but perhaps splitting the dose as we have suggested above - the larger portion in am and the smaller one pm - may not make a difference. You won't know until you try it, and I'm not speaking from experience here as I never tried splitting my dose. Perhaps someone else might come along who has found it has worked for them.

[PMRpro Ambassador in reply to Patricia10]

It all depends - there is one lady who found that she slept all day when she took her pred in the morning but couldn't sleep at night- now she takes them before bed, the sleepy period happens overnight and the fuzzy head has gone too. Another lady had strange wobbly legs a few hours after taking her pred in the morning, taking it at night solved that too and she slept well.

Are you on white pred tablets or red coated pills?

If it is the white tablets they take about 2 hours to get to a peak level in your blood so try taking them as early as possible in the morning as some of the others have suggested and then settling down for another couple of hours in bed - they will have worked by the time you are ready to get up. The optimum time to take white pred for best results in the morning is 2am - a study was done to find out! There are a few people who wake in the night anyway so have tried doing that with really good results - some also found it made it easier to get to a lower dose.

If it is the red 5mg coated pill, they take much longer to get into your blood and the length of time varies. You can easily take them before bed at say 10pm - they won't release the pred into your body until about 4am so you will have had a decent night's sleep before that and will get up with a minimum of pain and stiffness.

And then there is the split the others suggested.

It really can pay to play around a bit with when and how you take it - studies showed it was best for the adrenal glands to take it in the morning but if you are on pred for a very long time it makes very little difference, there is adrenal suppression anyway. What is certain is that to have the longest time pain-free you want to take it in the morning rather than mid-afternoon and it will help morning stiffness better if you take the pred well before the stiffness sets in. The substances that cause the inflammation are shed in the body at 4.30am or so - if the pred is there quickly they can do less damage.

[Zane1 in reply to Patricia10]

When I was first diagnosed about a year ago my rheumy first put me on 15 & then decided to up it to 20 for a short period of time. It seemed to do the trick. Didn't stay at 20 for very long, but pain decreased.

[MaryWR in reply to Patricia10]

Everybody is different. I started taking mine at night but the GP said to take them in the morning as my sleep would be disturbed. Taking prednisolone in the mornings really reduced my pain control so I switched back to nights. I'm having the best sleep I've had for years and my pain control is 90% so give it a try. You might be lucky like me. I did find it tricky changing the time of the dose and did it in stages over a couple of days. Good luck.

[Patricia10]

Just wonderful to have your help, you are all so knowledgeable. I shall try splitting my dose, 5 at night, 10 in the morning and see how I get on. Thank you.

[Patricia10]

After all this advice I decided to split my dose so took 5 pred at 11o'clock last night and have just taken 10 pred this morning. It was amazing waking up this morning. I could move my arms comfortably, I have a slight stiff neck and slight pain in my forearm but could get out our bed and stand - no pain in hips or legs, could walk normally, absolutely amazing difference. A eureka moment. Thanks to your help

[Charlie1boy]

Hi Patricia,

You could have been describing my early start to PMR treatment 3 months ago. I was started on 20 mg, and within 3 days to 30mg, as my GP wanted to get the pain under control first. I hasten to add I am definitely not overweight!

Stayed on 30mg for three weeks, and gradually got down to 15 now.

Initially, I had the same problem as you, insofar as I woke up with pain. It was then that this forum was such a help, and I ended up taking the pred between 2 and. 4am, which enabled me to keep pain free during the day, which was fantastic. Incidentally, it took some 4 to 5 hours for the pred to kick in.

As a previous reply said, we are all different, and need to experiment, and see what works best for ourself. My GP. Is fine, but my experience so far is that the advice and information you get from this forum is absolutely invaluable in learning how best to cope with this affliction.

If you haven't already done so, I recommend you get Kate Gilbert's book - Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. You can get it on Amazon. It is full of really good information.

Good luck.

[Patricia10 in reply to Charlie1boy]

Thank you Charlie1 boy for you help. The forum is great. I am going to order Kate Gilbert's book now

[Patricia10]

Your experience is what really concerns me as the threat of GCA is always there. Hope you are OK at the moment.