PLS HELP- Start of therapy - response in how many days?

[Pmrconfusion]

I am 68, M. Was having fatigue and muscle pain for 1 year. It increased in last 1 month, ESR is 90, low grade fever for 1 month. Did several tests, found anemia of chronic disease, mild neutrophila and started on pred.

I had started 15 mg Pred 6 days back, for last 2 days, bumped it to 20 mg.

Taking 15 mg early morning, and 5 mg around 3 pm.

Still no relief in symptoms. Only on first dose, on first day, it seemed better. But it is downhill since day.

So, when you all started taking pred, in how many days you felt better? Understand that lot of people get better from 1st day, But read an article that said median response time is 10 days.

Any advice for me? Am really worried. Should I go for a PET scan?

Thank you

[SheffieldJane]

It may be that you needed a higher start dose. I started at 20 mgs and was relieved of my symptoms within 48 hours. This process is helped by resting.

Give it a chance before exploring other options. Has the split dose helped? I needed all mine very early in the morning.

[Pmrconfusion in reply to SheffieldJane]

No, split dose hasn't helped. Am planning to take 20 mg tomorrow morning. Should I increase to 25 mg or wait for a couple of more days?

[PMRpro Ambassador]

If 15mg didn't work and you have increased to 20mg to try that it still needs to be taken all at once as early in the morning as possible to achieve the greatest impact. Only once that is established is there any value in splitting the dose - you may not need it once the inflammation is under control.

I had significant relief, especially of the stiffness, in under 6 hours with 15mg. I am not alone - but that speed is not common. One criterion for diagnosis of PMR has been a 70% global improvement of symptoms in a week to 10 days. That always depends on the dose being high enough and current recommendations are to use the lowest effective dose in the range 12.5mg to 25mg/day, exceptionally 30mg. Requiring more than that is felt to be a reason to consider an alternative diagnosis. PMR is not the disease, it is the symptoms of an underlying disorder and there are several.

[Pmrconfusion in reply to PMRpro]

Thank you. Will 2 am be a good time to take the dose? I get severe pain at 3 am usually.

[PMRpro Ambassador in reply to Pmrconfusion]

A study found 2am was the optimal time to take pred to minimise morning stiffness.

3am is early for typical PMR pain and stiffness - the assumption is that the inflammatory substances are shed at 4-4.30am and that is when the pain manifests - and when severe pain/stiffness is earlier it does suggest there MAY be something else going on.

What exactly are your symptoms and their timing?

[Pmrconfusion in reply to PMRpro]

Fatigue, muscle pain all over body, occasional low grade fever, low appetite.

Muscle strength is normal. CPK is normal. CRP and ESR is high with anemia or chronic disease.

[PMRpro Ambassador in reply to Pmrconfusion]

Do you have specific locations of pain when it starts at night? Spine, for example?

[Pmrconfusion in reply to PMRpro]

It is predominantly in calf muscles. Also occurs in other muscle groups, many times all over body.

I know it is atypical presentation, but we have done all sorts of blood tests. ANA antibody is negative, thyroid is normal, aldolase, LDH is also normal. Liver enzymes also normal. Mild elevation of Alkaline phosphatase though. CPK is normal.

[PMRpro Ambassador in reply to Pmrconfusion]

Does sound very PMR-ish. But calf muscles sounds a bit large vessel vasculitis. You've started pred now but has the rheumy not considered a PET scan? Probably the best way of imaging inflammation in PMR/LVV.

[Pmrconfusion in reply to PMRpro]

Mmm... Can I go for PET scan now? Should it be full body PET scan. He did think about it, but I wanted to go ahead for a steroid treatment as symptoms were very much close to it. I am an Ophthalmologist as such.

[PMRpro Ambassador in reply to Pmrconfusion]

It is usually full body yes as the vasculitis can affect arteries anywhere - but a dose of even 10mg of pred is felt to compromise the result. Mind you - if you still have symptoms, you would think the inflammation would still show up.

[Pmrconfusion in reply to PMRpro]

Talked to my physician. He has suggested to up the dose to 25 mg in a single shot. Will update what happens. If I don't improve with that, what other choice I have than stopping steroids and then waiting for a week to get a PET?

[PMRpro Ambassador in reply to Pmrconfusion]

I honestly don't know - did the rheumy not say anything? You are at least still at a point where you can stop pred easily to try that,

[Pmrconfusion in reply to PMRpro]

I and he both hope that 25 mg will help me in a couple of days. I guess i can stop prednisone abruptly before 10 days.

[PMRpro Ambassador in reply to Pmrconfusion]

Or taper very rapidly at least. Hope the 25mg works.

[Pmrconfusion in reply to PMRpro]

So, I took 25 mg at 2 am. For the first time, I didn't get pain in the night and morning pain. I was relatively fine till 6-7 pm. However, at 8 pm, I developed severe pain again and had to take a pain killer. Also feeling pretty weak with the pain as usual.

[PMRpro Ambassador in reply to Pmrconfusion]

Same as I replied to the other comment saying the same:

Which suggests that you are a person for whom the antiinflammatory effect of pred isn't lasting the full 24 hours - the effect wears off before the next dose is sue. It can be anything from 12 to 36 hours and one way of dealing with that is to split the dose, commonly about 2/3 in the morning and the rest later in the day, at the latest a couple of hours before you expect the pain to reappear - so for you at maybe 4-5pm. It's possible that 20mg in the morning and the 5mg later would work - but you need to experiment a bit to find what works best for you.

[Pmrconfusion in reply to PMRpro]

Thanks a ton

[Arflane97G]

I started on 15 mg of Pred which I take around 5 / 6 am all in one dose and then go back to bed. Got 80 % relief within a few days. Is your GP sympathetic? Would suggest going back to discuss. I have mentioned elsewhere that I had a shaky start with my practice - they seemed convinced it was an arthritic flare and nothing else so I had to push for blood tests and swift appt with rheumatologist but all good now. Best wishes

[Pmrconfusion in reply to Arflane97G]

Thank you

[Charlie1boy]

In answer to your question, I was put on 20 mg to start. Stayed there for a week, then was upped to 30 mg. it was another three weeks before I was ready to taper down.

This is probably longer than many PMR people on this forum, but we all have differing metabolisms!

Also, I did as pmrpro has advised, and took all the pred in one go at around 2am.

Good luck.

Paddy

[remission]

Hi PMR confusion.....guess we're all a little confused by the drug prednisone. From those I have spoken to, like myself, they were all started on 40 to 50 mg for 5 days and then dropped to 20 and then down frm there, 5 mg every 7 days to reduce. All I know is my symptoms cleared up after day 2, I am 2 1/2 months later and weening off of the drug and symptoms cause me pain, but I am willing to suffer thru it to get rid of the drug in my system and seek other medications - currenlty looking at THC/CBD

[Pmrconfusion in reply to remission]

Didn't most people here start at 15 or 20 mg daily dose?

[Koalajane in reply to Pmrconfusion]

Most people in UK are started on 15mg dose

[Meggsy]

Hi Pmrconfusion, just to add to others’ responses, I began on 15mg but it was not enough, so after 2 weeks GP upped the dose to 25mg. This worked and have tapered reasonably smoothly since. Had a couple of glitches at 10mg but was successful on third attempt. Presently on 6mg after 20 months. All the best 🌻

[Pmrconfusion]

So, I took 25 mg at 2 am. For the first time, I didn't get pain in the night and morning pain. I was relatively fine till 6-7 pm. However, at 8 pm, I developed severe pain again and had to take a pain killer.

[PMRpro Ambassador in reply to Pmrconfusion]

Which suggests that you are a person for whom the antiinflammatory effect of pred isn't lasting the full 24 hours - the effect wears off before the next dose is sue. It can be anything from 12 to 36 hours and one way of dealing with that is to split the dose, commonly about 2/3 in the morning and the rest later in the day, at the latest a couple of hours before you expect the pain to reappear - so for you at maybe 4-5pm. It's possible that 20mg in the morning and the 5mg later would work - but you need to experiment a bit to find what works best for you.