Steroids not working- still stiffness and pain

[Bearroxie]

Steroids Ineffective

My sister diagnosed with pmr 2 months ago after a virus and cough. 12.5 mg of steroids ineffective. Do you think she may need a higher dose?

[GOOD_GRIEF]

The usual starting dose is 20-25mg, so this seems quite low.

I'd be asking some questions about why this is the level the doctor chose.

[HeronNS]

One of the ways of confirming a diagnosis is a rapid (can be hours, usually a few days) response to pred. But the dose prescribed at the beginning should be at least 15 mg and many people do need more. I responded very quickly to 15. If more than 25 mg is required that does call the diagnosis into question although a few people do seem to need more for PMR. It is amazing what a difference a couple of mg can make. But I'd have thought after two months that she would have noticed some improvement, even if not as much as a slightly higher dose might have given. Time for a chat with the doctor: is the dose too low? Probably. Is the diagnosis wrong? Possibly. Only an increase in pred can answer either question.

[Blearyeyed]

Was this her original starting dose or has she been asked to reduce to this dose over the last few months?

If your sister has PMR and her current dose isn't effective she should go back to her GP as soon as possible and discuss increasing to a higher dose during an examination. If the dose she is on now is the dose she started with it certainly may have been too low to bring her symptoms under control.

Her GP may not be aware of the needs of a PMR patient or used to caring for one , and they made need more info on her progress at her current dose to make drug decisions that are better for her. Printing off the PMR/ GCA guidelines and reading through the information there will also help her work out what questions she wants to ask about her treatment.

If she is happy with your support you could also go to the appointment with her to help her .

If she hasn't had an appointment with a Rheumatologist yet she should ask to be referred .

If she has any other medical conditions that require drug treatments , especially ones that affect the muscles, joints , nerves or bones , she may also need extra support or an adjustment in the doses of drugs she is on for those , especially if those drugs involve pain relief.

Has she also been given Vitamin D and Calcium supplements?

These are taken with PMR and can also reduce problems with pain , bone health and side effects.

She may also need to look at her daily routine and try and pace her day more with a balance of short rests between activities .

[TMenz]

I was also diagnosed with pmr in January after a cough and cold. I was put on 15 mg and within three days saw drastic improvement with a lot of pain probably 70 percent better. However 7 weeks later I was still left with slight pain in neck shoulder and very inflamed muscles in fingers legs arms ankles. I have just been back to doctors (Thursday) and increased to 20mg and have notice my ankles have gone done already so I’m hoping more does over next few days. Can anyone tell me how long the inflammation lasts - does it mean the doesage isn’t high enough or is this the norm with pml ? My legs and knees are very swollen so can’t kneel etc. I have been referred to a rheumatologist but appointment isn’t until April. X

[Hidden in reply to TMenz]

Had you reduced in those 7 weeks?

[TMenz in reply to Hidden]

No I hadn't reduced in that time. I went back to doctor as after reading up online I

Realised I should've been improving quicker. When I was diagnosed at beginning of January my ESR was 74. I started on 15mg then had my bloods done again four weeks later, end of January and then my ESR went down to 34. I am due to have more bloods this week and every month until I see my rheumatologist in April. This forum is brilliant for info very helpful. I am 70 percent better but I felt I needed to up my steroids as still in pain with stiffness. I could hardly walk and couldn't stand for long without aching and throbbing feet and legs at the beginning of january but these symptoms have gone now. Any advice is most helpful as to be honest I'm only just understanding pmr through reading this forum. Thank you

[PMRpro Ambassador in reply to TMenz]

Sorry - not clear what you mean by "how long the inflammation lasts"?

PMR is due to an underlying autoimmune disorder which makes the immune system unable to recognise your body as self and so it attacks it in the same way it would an invading virus or bacterium. This process triggers the shedding of inflammatory substances early in the morning as long as the autoimmune disorder is active - and that can be for years - and that creates the inflammation that causes the symptoms. The pred doesn't cure, it is a management strategy to relieve the inflammation, and so the symptoms, to allow a better quality of life in the meantime.

It is impossible to predict how long it will last - it will go when it wants just as it came when it wanted.

[TMenz in reply to PMRpro]

Thank you for your reply. I'm only just understanding pmr by reading all these posts. Think I stayed on 15mg for too long and should've upped them sooner. I wish I had of read up on this forum sooner. So i get it I will stay inflamed all the while I get this under control it's part of it. I started the 20 mg last Thursday and still have the dull aches/pains in neck and legs and fingers and left arm is very weak. I'm very stiff in legs. Inflammation has come down since thursday especially on ankles but fingers are very swollen as are ankles still and knees legs. Does this all sound part of it . ? I started 20mg Thursday how long do I leave it at 20 if the aches and neck pain doesn't go. It's more of a slight pain now and discomfort.? Thsnk you

[HeronNS in reply to TMenz]

A diagnosis of PMR is a diagnosis of exclusion. If the symptoms can't be explained by anything else, but a moderate dose of pred is very effective in relieving symptoms (they say at least 70% but it usually is even better), then you are left with PMR. I wonder if the swelling you describe is a symptom which could lead to a different diagnosis, possibly better treated with a different medication, but I don't really know.

emedicine.medscape.com/arti...

[PMRpro Ambassador in reply to TMenz]

You probably need to stay at the 20mg until your symptoms have subsided as far as possible - it's a shame you didn't go back to the doctor sooner but you are where you are. You probably don't need to go any higher - just be patient. Do keep notes of your symptoms and how they respond to the pred for the benefit of your rheumatology appointment. Perhaps take pictures of your fingers too.

Swollen feet and hands can be due to something called RS3PE syndrome which is more common in PMR patients. It should respond to the dose of pred you are on and if it doesn't maybe they need to consider other possible diagnoses.

Not all the pain is necessarily due to PMR - tight muscles can be caused by myofascial pain syndrome and while that is also more common in PMR patients it will respond to some extent to higher doses of pred in PMR. You may not achieve 100% relief of symptoms - but you should be very much better.

[TMenz in reply to PMRpro]

Lovely thank you for your help. I’ll look up these other things too like rs3pe. Yes I have wrote notes and dates for rheumatologist just annoying waiting until mid April. I’m having bloods done tomorrow so should see an improvement fingers crossed x I am interested to see what most people’s inflammation markers was mine was 74 when diagnosed and didn’t know if this was the higher bracket or what most people are - I read some were 40. I was wondering if 74 was particularly high if that’s why I have needed to go up to 20mg of pred.

[PMRpro Ambassador in reply to TMenz]

It is fairly high but their level, the symptoms and the amount of pred are not related in any way. My blood markers were never above the "normal range", 16-18 was about the highest they ever showed, well within normal range but very raised for me. I did respond in under 6 hours to 15mg of pred - but after 15 years, I still have PMR and struggle to ever reduce below 10mg.

[Meggsy]

Hello Bearoxie - Like Tarawilliams, I still had pain and weakness in left arm after 3 weeks on 15mg. GP increased dose to 25mg which did the trick. Was 12.5 your sister’s starting dose?

[SheffieldJane]

I started on 20 mgs and really needed it. I obtained complete relief within 48 hours. I remained there for a few weeks then started a gentle taper down, stopping at the first sign of persistent, returning symptoms. Good luck for your sister. I understand that it is not unusual for PMR to be triggered by a virus.

[PMRpro Ambassador]

I imagine it is extremely likely she needs a higher dose. I suspect the doctor chose that dose because a study in Italy said that 75% of patients got a positive response in a month when started on 12.5mg. The results were better in small slim women than larger men.

However, NO guidelines really expect that sort of dose to work - the 2015 guidelines say the lowest effective dose in the range 12.5-25mg. Effective means you see a good result in a couple of weeks max - after 2 months that is far too long. She has been exposed to steroids with no benefit to balance out the downsides - not much point there. It shows the pointlessness of being so scared of using pred - it provides neither relief for the patient nor any evidence about the speed of response which is of interest in providing backup for the diagnosis. If you don't need that much pred - you will be able to reduce easily.