New to PMR

[Pinkly]

Diagnosed with (PMR onset inflammatory arthritis) just over three weeks ago. Prescribed Prednisolone 20mg for three weeks. After my Prednisolone at breakfast the pain slowly subsides over the next six to eight hours only to return the next morning where the same thing happens again. Is this normal? The specialist has told me to reduce to 17.5mg after three weeks but should i wait until the pain has gone completely? Looking into the future will I ever be able to lead a fairly normal life DIY etc?

[PMRpro Ambassador]

Hi and welcome!

Yes, that is absolutely normal for a lot of people. The body sheds the inflammatory substances that cause the symptoms every morning about 4-4.30am. The sooner after that you take the pred - the less work it has to do and the quicker it will work. The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the person so if you are unlucky and closer to the 12 hour end the pain will return before the next dose is due. Later, once you have got the measure of your PMR and your response to pred you may be able to tweak things a bit but at present the dose is still clearing out the accumulated inflammation and if you are lucky it will get better. You might never be entirely free of pain - it is too early to say yet so just be patient. You could try taking the pred in the early morning and settle down for another couple of hours by which time it should be working. Are you on plain white pred tablets or on colured enteric coated ones? That is important to know - enteric coated tablets take up to 5 hours to get into the system and that may be why it takes so long to work. Many people have found that taking them before bed makes morning much better and doesn't mess up their sleep.

Personally I would say 3 weeks was a bit soon to reduce but it may well work so try it and see how you get on. Will you be able to do DIY? No way of saying at present - some can, some can't. You will get back to much more like normal but it may well be a new normal at a lower lower level or require some changes in how you do things.

[Pinkly in reply to PMRpro]

Many thanks for your morale boosting information. I’ll try taking pred earlier and see if that helps.

[PMRpro Ambassador in reply to Pinkly]

I did also ask what sort of pred you are taking? Is it enteric coated or plain white pred? That makes a big difference.

[Pinkly in reply to PMRpro]

Sorry I seem to have missed answering this question. I am on the white tablets and after 6 months had reduced intake to 9mg but have resumed 10mg for a few weeks before I try to reduce by 1/2mg. All in all I am feeling much better and I feel heading in the right direction. Thank you for all your support.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

You say you were prescribed Pred for 3 weeks, but how long have you actually been on it?

Some ppl get a miraculous recovery, but not all.

Couple of points -

20mg may not be quite enough for you personally, or you may not have taken enough to clear up all the accumulated inflammation that has built up prior to medication - hence the question if how long you’ve been on it.

are you trying to live life normally when you are pain free?

The inflammation I refer to is produced every day around 4am, so if your medication is not lasting 24 hours, that’s why mornings are difficult.

For some ppl having the same problem as you we sometimes recommend taking medication at night, or maybe splitting it, evening and morning - but you need to give the initial dose time to work, and sometimes 3 weeks is not enough. Personally I think 4-6 weeks is better.

And no, do not reduce if you still have pains, taking a lower dose will just create more issues.

I think you probably need to speak to specialist at the end of 3 weeks and explain your issues.

But in the meantime have a look at this, and yes if your medication is at the correct level you should be able to lead a normal life - albeit slightly more slowly and with a bit more forward planning -

healthunlocked.com/pmrgcauk...

[Pinkly in reply to DorsetLady]

Thanks for your help. I have just seen the specialist and it was his advice that I should reduce the dose to 17.5mg after 3 weeks. He knew I was in pain in the mornings but thought that would reduce in a few weeks. I am due for a specialist follow up in about six weeks so we shall see.

[cisy]

Hi I too was put on 20mg for 3-4 weeks and was only managing to get out of bed for an hour or so around 4pm. Then got a call from the Dr telling me the rheumatologist (I haven't seen one yet) wanted me to reduce by 5mg a week. I started on the Monday and by Friday I rang the Dr and told her how much pain I was in. She told me to go up to 30mg a day. That was 2 weeks ago. I'm still a little sore in the mornings but having horrendous hot sweats and dont have any energy. Its hard to know what's the problem and what's the medication. it's even harder with Covid and not being able to see Dr's etc.

[Pinkly]

Thank you for your reply. This is a weird disease which has come from nowhere and taken me completely by surprise. It is not until the afternoon that I have any energy, the mornings being a complete washout. I hope you continue to improve with your larger dose which no doubt you will reduce more slowly this time.

[Jamie751]

Wise words from PMRPro and Dorset Lady