Just Diagnosed with PMR and Confused

[Getmoving4]

Recently diagnosed with PMR and put on 15mg of prednisolone for week to confirm. Certainly the excruciating pains in shoulders, upper arms, thighs, hips and calfs subsided considerably in first few days . Now on it for a month before review. I understand that the PMR is there and steroids just help with blocking activity that causes inflammation. So is inflammation still there? I ask because in the morning its still so stiff and painful, takes about 4 hrs to ease up and then around 5pm it starts aching again.

[piglette]

Perhaps you need a slightly higher dose, many people do.

[Getmoving4 in reply to piglette]

Yes could be as there doesn't seem any standard process for dealing with newly diagnosed PMR. Will stick with it for a while & if no improvement will see if can speak to doctor.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

As piglette has said you may a slightly higher dose.. or longer on 15mg - and yes you probably still have inflammation . At the beginning the Pred is working on 2 fronts - firstly to clear out the built up inflammation [pre diagnosis] and secondly dealing with the daily shed of inflammation. Explained more in this link along with other issues -

healthunlocked.com/pmrgcauk...

Plus you have to remember you do have a serious systemic illness, and you cannot just return to normal life because you are on medication.. you need to learn to manage your illness - and that can be difficult early days.

[Getmoving4 in reply to DorsetLady]

Thanks for your advice & the link. Yes probably need to give it more time as only abt 10 days on it. After first 3 days of tablets it was such a relief initially after what been experiencing that had come out the blue. Need to come to terms with it as a huge shock. And accept no quick fix because as you say its a serious systemic illness, but not easy as huge impact on every day life.

[DorsetLady PMRGCAuk volunteer in reply to Getmoving4]

Although we have said it may not be a high enough [which it may not be], have just seen a reply where it has been suggested that you increase dose - but that shouldn’t be done without the approval of your doctor.

If at your review, you feel no better, then do raise the subject of increasing, but as I’m sure you appreciate, we cannot tell you to do that, only suggest you discuss with your medics.

[PMRpro Ambassador]

Hi and welcome!

The sooner after about 4am you can take your pred in the morning, the less new inflammation the pred has to mop up. But it also sounds as if you are one of the patients for whom the antiinflammatory effect of pred doesn't last the full 24 hours. One way of dealing with that is to split the dose, about 2/3 in the morning with breakfast and the other 1/3 later enough for the effect to last until next morning but we usually say to get used to your reaction to pred and your PMR before speaking to your doctor.

[Getmoving4 in reply to PMRpro]

Thanks for that, only been on it for about 10 days & don't have review with doctor for a month. When you say take ⅓ later what sort of time would that be ? Guess for now stick with it for a couple of weeks & if no better get in contact with doctor

[PMRpro Ambassador in reply to Getmoving4]

It depends - for many taking 2/3 at breakfast and the rest at lunchtime may achieve the desired improvement, for others it may need to be a bit later, teatime for example. The later in the afternoon/evening you take pred, the more likely it is that your sleep may be affected so the earlier in the day you take it the better. It often needs a bit of trial and error to find what works best for you.

You may find it improves over time - you do have to clear out the accumulated inflammation for the best symptom relief and that may not happen all at once.

[Getmoving4 in reply to PMRpro]

Thank you for all your advice. I have been on 20mg for about a month now. Have found taking 15mg ⅔ around 3.30am & 5mg ⅓ around midday has worked v well at stopping pains by 99% One question I have is how do you know when the accumulated inflammation has been cleared out & you are only dealing with the daily shed ?

[DorsetLady PMRGCAuk volunteer in reply to Getmoving4]

You don’t ’know’ for sure.. probably depends on how much had accumulated and how quickly the Pred works - and that is lightly different for everyone.

One of the reasons why some of us query that the initial is taken for enough time in some patients . Obviously that is higher than a normal day to day dose required -because it’s working on 2 fronts, and although nobody wants to take a higher dose for longer than necessary, it does need to be long enough.

It did used to be 6 weeks, but following studies that was considered too long, so was reduce to 3 weeks. As with many things PMR, it’s long enough for some, but not all.

Personal opinion only- at least 4 weeks.

One way would be test inflammation , but they aren’t always as reliable as some think.

Just for info, and it’s not normal let me add and long before Covid, but I lost sight through late diagnosis of GCA.. so started at 80mg - and had to go to hospital about every 3rd day for blood tests in the first few weeks before my ophthalmologist was happy to make first reduction.. and then at 60mg,[for another 8 weeks].

[PMRpro Ambassador in reply to Getmoving4]

You don't really which is why we think a good month on the starting dose until you are down to a steady low level of symptoms is better than rushing to taper. Then you are still going to be well above the dose you will need and you should be able to get to a lower dose with there still being a margin to keep clearing things out. As long as you are on more than the lowest effective dose there is pred to spare so to speak - and that is likely to be a while. If you find you struggle to reduce the dose at all, that shows you are on the borderline. Or it isn't PMR - that is also a possibility when you have problems.

[Exflex in reply to PMRpro]

Excuse me for entering someone else’s conversation here… I’ve read about Pred ‘mopping up’ inflammation. I’m curious to know how?

[PMRpro Ambassador in reply to Exflex]

In what way "how"? Pred is about the most powerful antiinflammatory medication on the market.

In very scientific language it is explained here:

ncbi.nlm.nih.gov/books/NBK5....

It probably works in PMR in two ways - first acting on the actual site of the inflammation but also suppressing the activity of the immune system itself. But it doesn't cure anything, having no long lasting effect on the actual process that is creating the inflammation,

[Exflex in reply to PMRpro]

Thanks PMRpro. The article is quite complicated but together with your reply it helps my understanding, certainly more than fifteen minutes ago before looking at your reply.

The “how” question was about emptying the bucket, it’s mysterious that I’ve just taken as fact as often stated here, and I’ve not questioned it. The fact that I now have a rather serious lung condition (recovering from Covid, pneumonia and incurable pulmonary fibrosis) I wished to know how my 7 day course of 40mg Pred would reduce lung inflammation. Any new inflammation is blocked I believe by the effect of Pred blocking the IL-6 receptors. But once I’ve finished the 7 days my immune system will be able to do what it likes.

I apologise to those who read this and think what the hell, this is not PMR or GCA, but I suffered from PMR for 4 years so I know well the effects. I’m on the lung health forum here on HU but it’s not as active as this group, and I know that you know your stuff and generous with your time, but I don’t want to over extend your generosity.

Apologies for the long reply.

[PMRpro Ambassador in reply to Exflex]

Not that long!!

But the question is, is the lung condition due to an ongoing condition? Often pred is used in lung conditions to reduce inflammation due to, for example, a bacterial infection, while antibiotics are combatting the infection that is the cause of the inflammation. Once the bacteria are dealt with, the need for pred reduces. Many illnesses treated with pred are due to things with a limited duration and the pred is a quick fix while other medications are taking a slower effect.

[Exflex in reply to PMRpro]

Until being admitted to hospital all I knew was my breathing was bad. Shortly after arrival I was X-ray’d and given a lateral flow test. Registrar returned and informed that I had Covid and pneumonia. Put on Doxycycline for 10 days in hospital (in for 11 days), and whilst in had a CT scan and the bad news came that I had PF, a degenerative disease. I think the 40mg Pred is helping a bit, but understand I have to stop after 7 days, although I have enough for 9. If I can only get my breathing a bit better that will enable me to function a bit better.

[PMRpro Ambassador in reply to Exflex]

Once the infections are improved, the swelling should improve and the stopping of pred be less significant. Get well soon.

[DorsetLady PMRGCAuk volunteer in reply to Exflex]

Not a problem... if we can help [and PMRpro invariably can] we'll help, if we can't we'll say so..and hopefully direct you to somewhere that can..

[AtopicGuy]

To get the best from the trial, I suggest increasing the dose to 20mg/dy and then giving it 2 - 3 weeks before judging the outcome. What you describe is a good start, but PMR usually responds better.

[Hidden]

hi. i was diagnosed with GCA and PMR in Oct/23. i was a 67 female at the time and in very good phyical condition and health. i had never been sick other than cold like things and sport injuries in my entire life. it took me several months to get a handle on the diseases, the fear, the pain and my no longer active future. i was also luckily mostly retired as i sold my biz and could not have worked that summer before. i started at 50mg of prednisone (after a biopsy. confirmation) which truly messes with your mental health. i am now on 4mg and hopefully can keep tapering. i started a weekly injection of Actemra in Jan/24 which i hope is working. i have found especially my stiff hips and general weakness in the mornings is greatly helped by walking. some days i don't get far, others i can walk miles. it gets better and you learn to cope. i am happy to be on your support team. it is very scary, mostly because it is sooooo rare and lucky if found early. i see an opthmologist about every 3mos due to potential for blindness. so far so good. but GET ONE. that is actually my bigggest fear. the rest sucks but is manageable. i got down to 7mg prednisone but had to go back to 10mg due to recurrent pain. i also go to a fascia massage therapist as this is actually inflammation of the fascia. a great video to watch:

History of PMR -- Interesting video presentation from past to present.

Polymalagia Rheumatic- what has changed since 1957 (on youTube)