Just diagnosed with PMR

[Washingup]

Doctor has put me on 30mg of prednisolone which I have taking for 28 days. Could cope with pain levels on this dosage. From yesterday, as per doctors instructions dropped to 20mg. Slept ok but this morning pain levels through the roof!! Can't get to speak to a doctor and don't know if to put myself back to 30mg, has anyone got any advise? Also the pain seemed mainly in my legs, could hardly walk. Thank you any advise would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome ..

30mg is very high starting dose for PMR -any reason given why so high -usual is 15mg, although it can be as high as 25mg.

Can understand why doctor reduced you, but as you discovered too big a drop.. 25mg would have been better.

As it’s come on so quickly it might be steroid withdrawal -which may be helped a little by paracetamol -but you do need medical advice.

Does your surgery have the eConsult facility or an email address to contact? If not then maybe ring 111 and explain situation.

If you don’t get any reply today, I might be tempted to try 25mg -but you really do need to speak to your doctor somehow.

[Washingup in reply to DorsetLady]

Thank you for your advise.

[diana1998 in reply to DorsetLady]

I was put on 30mg after a day of tests at Addenbrookes by a team of rheumatoligists. Didn't query it as totally ignorant in those days (Xmas 2015) and in agony in all my muscles. Reduced to 25mg after a month. Taken 6 years to reach 2.5mg reducing really slowly. Now reducing even more slowly!! Diana The Snail!

[Hidden in reply to diana1998]

Lol, patience is a virtue but few know that patience is synonymous with “long suffering”

I am content to suffer but suffering well is the trick, never let it into your mind

[Charlie1boy]

Hi, I was started at 20mg, then moved to 30mg after three days to get the pain and inflammation under control. As DL says, 30mg is high, but not unheard of. I dropped to twenty five, but only when any pain had cleared up.Otherwise, I endorse DL’s comments entirely.

Good luck

Paddy

[Washingup in reply to Charlie1boy]

Thank you.

[Washingup in reply to Charlie1boy]

Thank you.

[123-go]

Hi there. I'm sorry to hear this. I agree with DorsetLady's comment that 30mg is a high starting dose and also that a 10mg drop may be a step too far. It would be expected that your pain level would have reduced by around 70% after a month on the original dose. Remaining on that for a further two weeks may have got on top of the inflammation in your body and prepared you for a sensible reduction. I, personally, would ring the surgery again and tell the receptionist that you are in extreme pain and you that you need to speak to someone as a matter of urgency and stand your ground. If that fails, ring 111 as suggested.

Many of us on the forum have found that we have to advocate for ourselves and we're all behind you. Good luck!

Let us know how you get on.

[Washingup in reply to 123-go]

Thank you so much for your reply. Felt suicidal this morning so much pain. It has resided now but having to look after my grandson tomorrow morning wondering if the pain will be the same. I have decided to take 10gm this evening so I will be better tomorrow morning. I know this is my decision, but will see how I am tomorrow. Will call 111 if necessary. Thank you again.

[cranberryt]

Was your pain entirely gone at 30mg? You said you could “cope with pain levels” at 30mg. At that dose, if it was PMR, you should have been virtually pain free, especially a month in. I question the PMR diagnosis if you were still in significant pain on such a high dose.

[Washingup in reply to cranberryt]

Thank you for your reply. I found on 30mg pain level was low in the morning by afternoon just felt small amount of pain. Cutting back to 20mg made pain unbearable this morning but by midday it had diminished.

[cranberryt in reply to Washingup]

I would suspect that it was too early to taper then as you should be pain free before tapering. perhaps you still have some inflammation built up. Some pain for a few days can be normal when tapering but pain that persists or begins after a week indicates the dose is too low.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

If you still had pain at 30mg, I would be wondering whether it is all PMR... at that (high) dose all PMR pain should be under control.

Think you definitely need to speak to GP, and ask for referral to Rheumy (whenever that may be).

[Washingup in reply to DorsetLady]

Will TRY and get an appointment with Dr. Thank you so much.

[DorsetLady PMRGCAuk volunteer in reply to Washingup]

Know it's difficult, but think you may have something more than just PMR going on...

[Washingup]

Thank you again.

[piglette]

Four weeks should really have knocked the PMR on the head. Reducing by 33% to 20mg probably was not a very good idea, I wonder how knowledgable your GP is about PMR? Normal rule is go back to the dose at which you last felt comfortable, which in your case is 30mg. Then next time reduce more slowly. Talk to your doctor as soon as you can and tell her what happened.

[Washingup in reply to piglette]

Will do. Thanks.

[PMRpro Ambassador]

I suspect that was entirely due to leaving you at a high dose for so long and then dropping the dose by such a massive amount overnight!

The new daily inflammation dump is in the early morning and it gets going while waiting for the day's daily dose of pred to get into the system and act. It sounds very possible that there are 2 factors at play - that massive 33% drop in dose (10% max is recommended at any level) and that the antiinflammatory effect isn't lasting over until the next day's dose is due. If that is the case then taking 10mg tonight should help that - you'll see,

And I do have to remind you - the pred isn't a signal to go back to your former lifestyle and activity levels. It relieves the inflammation but you may have to make some changes to get the most out of the management strategy.

[Washingup in reply to PMRpro]

Thank you. I can see exactly what you're talking about, going to try 5mg tonight and see how I go.

[Bleakley1]

I also was put on 30mg when I was first diagnosed with PMR five years ago. I was at my wits end with pain. Pain in usual places,shoulders,neck,buttocks,and worst of all legs. I could hardly walk. After several tests It was revealed my CRP levels were extremely low. Doctor referred me to Rheumatologist who confirmed PMR. Rheumatologist was a bit scathing about Doc putting me on such a high dose to start but thank goodness he did as the results were amazing regarding reduction of symptoms. I was transferred to a different rheumatologist nearer where I live and began a reduction programme. It was not as high as you dropping by 10mg at one go. That to me is too fast. It needs to be gradual in smaller amounts. Unfortunately there is no quick fix for PMR. It is a very slow journey for most of us. I am now on 6mg with many,many,flare ups along the way but don’t lose heart,this site is very helpful with advice. I do think you need your blood work testing though to see where your blood levels are at. Good luck on your journey.

[Washingup in reply to Bleakley1]

Thank you. It's so reassuring to hear of people like yourself with this problem like me improving in time. Gives me hope.

[Zebedee44]

Sadly many of our doctors are really uninformed about the treatment for PMR and go by what the book says. Five years ago my own doctor started me at 50mg!! For three days, then down to 25mg, 20, 15 all very fast. WRONG! I’ve learnt all I know about the condition from this forum over five years and still have a long journey ahead, but amongst friends here.

I always split my dose to be pain free in the morning and achieve a busy active life but pacing is the key alongside the dose management. It’s a lifestyle none of us want to have, it’s like juggling. Good luck on your journey, take things steady.

[Washingup in reply to Zebedee44]

Thank you for your reply, it all helps people like me just starting on this painful journey.

[Daffodilia]

I started with on 40 mg and reduced much more slowly - I think you should go back to GP - good luck

[Hidden]

Hi, welcome and so sorry for your pain. I was diagnosed 6 weeks ago and because my inflammatory markers were so high (CRP 107) and I was in excruciating pain, I was started on 20mg Prednisolone for 2weeks…then planned to reduce to 15mg for the following month. But the pain had only reduced by approximately 40% after the first two weeks so I rang my consultant rheumatologist who told me to stay on 20mg and she would see me the following week, after more bloods were taken.

Bloods revealed CRP was then down to 27 but she wasn’t happy with some of my symptoms so she doubled my dose of Prednisolone to 40mg for the next two weeks as she suspected I also have something else going on as well as PMR - she is monitoring me for GCA and and another type of reactive arthritis. Great news. After 5 days on 40 mg I was totally pain free on waking and have stayed that way.

Today the 2 weeks at 40mg is up. I reduced to 30mg this morning for the next two weeks and have bloods being taken this afternoon where my Rheumatologist expects to see my CRP back within normal range and if it is I’m on track. If not she’s arranging a PET scan etc to investigate further.

My point being, surely your dosage is based on your inflammatory markers and such things as your other health conditions and weight?

Do you have access to your full blood results? As this may help you see what’s going on….it’s certainly helped me understand more.

We are all different and this disease affects each of us in many different ways and there is no ‘normal’ pattern just some common symptoms. That’s why this forum is so helpful because we all share our experiences and hope ours may just comfort or reassure someone else who is suffering similarly.

I know I’m very lucky that I’m being looked after by the lead consultant Rheumatologist at our hospital but she explained that’s because I’m considered severe and she’s not passing me over to my equally good GP’s care until she positive she’s got me on the right track.

Wishing you to be completely pain free very soon…it really does improve your days xx

[Washingup in reply to Hidden]

Thank you for sharing your information. I am under my GP and having a blood test in June. His instructions aren't working so I am trying things out for myself. Found 20mg in morning and 5mg evening helping me in the mornings now with pain levels tolerable, so have reduced to 25mg NOT 20mg as advised by GP. I really appreciate you response.

[Hidden in reply to Washingup]

I do wish you well and hope for a quick response for you as I know it’s the pain that drags us down. Just a foot note, I asked my Rheumy if I could split the dose and she said as I don’t sleep very well normally (max 6 hrs) by taking a dose in the evening, yes it would help with the early morning pain but it would keep me awake too! So I need to have all my dose early morning. X

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Many people don’t sleep well on Pred - whatever time they take it and would probably think 6hours was okay.

We usually recommend a 2/3rd morning : 1/3rd evening split -but you could try a 3/4qtr morning:1/4qtr morning split and see if it gives you better relief first thing.

Or alternatively if you wake early hours for a loo break or just wake you could take your Pred then with a spoon of yogurt, sliver of cheese or small slice of bread or plain biscuit -then it’s in your system for the 4am onslaught of cytokines/inflammation.

Sometimes it’s a bit of trial & error -whatever suits you!

[Washingup in reply to DorsetLady]

Thank you.

[PMRpro Ambassador in reply to Hidden]

"If not she’s arranging a PET scan etc to investigate further."

Bit late - it will show nothing much after you have been and are on high dose pred for so long. Even 10mg pred will mess the results up.

Actually - having a high level of markers doesn't always mean you need a higher dose - just as having low markers doesn't mean you have a simple or mild case.

[nuigini]

Sorry to hear you're in so much pain. Certainly, I agree with the others that the drop was too great.

Although I'm a bit of an old ball case, it took 40 mg to settle the original symptoms for me. Started at 20 mg, then 25, then 30 and after a total meltdown 40 mg. Within 18 hours I was pain free. My ESR and CRP were over 100 at diagnosis and dropped back to normal almost immediately. Docs had me reduce too quickly and I was back to square one. I struggled for a while until I found this and another forum (no longer in operation) and learned how to manage PMR properly.

[Washingup in reply to nuigini]

Thank you. Appreciate your feedback.