Typical day with PMR?

[PlymouthAndy]

I have recently been diagnosed with PMR and now taking 20mg Pred. My days always start with some discomfort, I take the tablets around 9am and eventually late afternoon/early evening I become “normal” - is this typical? Obviously this limits my activities! Should I split the dose Morning & evening?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

By recently, what do mean days, weeks?

You need to give it time - initially it's working on 2 fronts - mopping up the accumulated inflammation built up before you started taking it, and the daily shedding. Plus are you treating yourself as being back to normal now you are on meds... no can do. The pred is only working on the inflammation side of things of your PMR not the underlying illness itself.

Maybe have a look at this - especially the pacing link in it -

healthunlocked.com/pmrgcauk...

Give current regime a few weeks - then you may find you do need to split dose, but you also need to give it a far crack of the whip first.

[PlymouthAndy in reply to DorsetLady]

Thanks for the comments and linked article which was very interesting. I started on Pred at 15mg (following a telephone consultation) on July29th & seemed to be working well, then towards the end of Week 3, I started to regress over 3-4 days gradually heading back to square one. I was scheduled (by my Doctor) to drop to 12.5mg in Week 4 so I visited the hospital to see a doctor who agreed that dropping the dosage was not a good idea. My local doctor then increased the dosage to 20mg after carrying out a physical examination and that’s where I am now. Next Monday 9th, I am due to discuss the next step (which may involve dropping Pred to a lower dosage). Personally I would feel more confident if my condition had “stabilised” and didn’t vary so much from day-to-day. I’ll post an update after my consultation next week. Many thanks for your interest

[PMRpro Ambassador in reply to PlymouthAndy]

Are you doing your part in the process? You have to adjust your lifestyle and activities too - pred isn't a passport to returning to life pre-PMR.

[PlymouthAndy in reply to PMRpro]

Not at all sure what you mean? I am doing what I have been advised to do by my doctor - taking various tablets including Pred. There has been no mention at all about “adjusting lifestyle or activities”. Clearly in the long term this may become self evident but I have not received any guidance in this regard - so far!

[PMRpro Ambassador in reply to PlymouthAndy]

You aren't likely to - very many doctors think that as soon as the patient is on pred they are magically "cured" and able to return to their normal lifestyle and activities, This is far from reality and if you start taking your pred and try to carry on as normal you will almost certainly run into problems.

[PMRpro Ambassador]

Hi and welcome!

I would suggest starting by trying to take the pred earlier in the morning - the sooner you can take it after 4-4,30am when the inflammatory substances are released on the body the better effect you get - the pred has less to do. If that doesn't work as well as you would like the usually recommended split is 2/3 of the total dose in the morning with breakfast and the other 1/3 later enough for the effect to last the full 24 hours until the next morning dose is due. But doing it this way rather than a morning and evening split reduces the risk of the pred disturbing your sleep at night but your mornings are much better. The ideal time to minimise morning stiffness with a single dose of pred is 2-3am - then the pred is at its max in the blood just as the inflammatory substances are shed in the body and they never get a hold. But the split makes the timing of the morning dose less critical - just as early as is convenient.

[Fatsiajaponica]

Hi, just to add to PMRPro's comments re doing too much. I am also recently diagnosed, placed on 20mgs of pred, miraculous recovery the next morning, went out to mow the lawn and essentially just carry on as normal. Big mistake, I did not understand this condition sufficiently. I went backwards the next day and fortunately the wise heads on here helped me to understand that I cant do what I used to do and need to slow down. It got sorted and I stabilised again and now do half of what I used to do and that works for the PMR. Goodluck and take care of yourself.

[Seal49 in reply to Fatsiajaponica]

Absolutely, I found out the same thing the hard way too. But after awhile your new routine starts to feel normal Good Luck.

[Bcol]

Hi, as already said your Pred does nothing to "cure" what is a serious systemic disease, it only controls the inflammation. The chances are that if you continue with a normal, busy and maybe energetic lifestyle then PMR will make itself known. You will find that you need to rest more and put off or scale back everyday activities for the time being. This will, hopefully, improve over time though.When you get a chance a read through some of the information in FAQ's is a worthwhile activity. Don't try and take it all in in one go though.

[DorsetLady PMRGCAuk volunteer]

If you read my intro post it includes all the things that doctors [as non patients] don’t necessarily know…

[PMR_sufferer1]

I would try it as splitting it worked for me. I suggest 15 and 5 and remember PMR is quick to tell you if it's a good move or a bad one so you can always adjust the dose yourself.

[pmrgcavictim]

Hello and welcome to the club no one wants to join. I followed Doctor and Prednisolone box instructions until I found this forum. The information here is immense. My mornings were a no no for doing anything, but by 12 - 1 pm I was able to start doing stuff at a PMR reduced rate. Taking my full Prednisolone dose at around 2 am, gave me back my mornings. 6 years later it still works. It worked for me, it might for you, certainly worth trying. Good luck. Trevor.

[Broseley]

Hi, I agree with all that's been said above. My GP initially prescribed my pred and told me to take it as early in the morning as possible. So I took it at 8am after breakfast. Luckily it worked really well for me and I felt totally back to normal. But you can never go back to the level of activity you were used to, overdoing it because you feel ok can cause damage down the line. And pred weakens your muscles too, which you'll start to notice when you been on it for a year. I'm now virtually off pred after 3 years, I take half mg every other day and am hoping to stop soon. But I cannot walk, bend or kneel for longer than 30 minutes max. Climbing stairs kills my thigh muscles. I am now trying to build up my muscles by doing a bit more exercise, but you have to be so careful. Also I find stress is a real trigger. Then you end up with a flare and have to up your dose again for a while. Good luck, I hope you find a regime that works for you.

[AtopicGuy]

The average age of those diagnosed with PMR is about 72, meaning the sufferer is rarely hyperactive. However, some of the patients on this forum have been much, much younger and/or much, much more athletic. It would helpful if you could give some details in you Bio/Profile so that advice can be crafted to your case.

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for me . this was totally normal. walking the morning when stiff etc really helps me