aches and pains on 3mg pred

[Rosina1871]

I’ve been experiencing some bilateral aches and pains so had my crp checked. It’s normally 2 but is now 8 so I’ve upped my dose to 5mg which is where I felt ok. My rheumatology dept suggested staying on 3mg to see how it goes. With me having symptoms I decided to increase. Do you think 5mg is enough? I intend to stay on this dose for at least six weeks, or should I take 8mg for a week and then drop to 5. Thanks

[SheffieldJane]

You perhaps know that even the common cold can raise CRP and it isn’t really an accurate guide when you are taking Pred, even low doses. Your symptoms could even be your adrenal system beginning to sense the cortisol deficit and trying to work. This can cause pain, nausea, dizziness and fatigue. It might be useful to request a morning cortisol test to see if your adrenals are capable of working alone?At these low doses, there seems to be a final hurdle of discomfort to go through before you are free of Pred. Obviously if you think you’ve got a flare beginning to build ( symptoms clearly worsening) I would try to zap it with the 2 mgs you suggest initially. I hope this helps.

[Rosina1871 in reply to SheffieldJane]

Thank you. I’m just starting to feel the old symptoms coming back. Bilateral pains in my hands , shoulders and hips. Rheumatology are not happy with me

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

“Rheumatology are not happy with me”…

To that I would say tough! You aren’t deliberately in pain..and PMR does do what Rheumy wants….

Suggest you go with your second option….

[PMRpro Ambassador]

If it were me I'd see how I got with the 5mg first - only a day or two though, But a week at 8mg isn't going bring the heavens crashing down. As for the rheumy dept ...

[Rosina1871 in reply to PMRpro]

Rheumatology wanted me to stay on 3mg for another three weeks and then have another CRP test. I thought things could get much worse if I did that. Thanks for your reassurance. Will try 5mg for a couple of days

[PMRpro Ambassador in reply to Rosina1871]

If they had said one week I'd have thought that was fair - but 3 weeks can be along time in PMR, never mind in politics!!!

[Rosina1871 in reply to PMRpro]

I’ve looked at their response again and they said a few more weeks on 3mg which I didn’t find acceptable

[PMRpro Ambassador in reply to Rosina1871]

Quite agree

[Hidden in reply to Rosina1871]

Wish I was down to 3mg. I'd be happy to stay on that for a couple of months.

[Rosina1871 in reply to PMRpro]

How long would you stay on 8mg and then what would you drop too, 5mg

[PMRpro Ambassador in reply to Rosina1871]

Depends on how long it takes for the pain to go - up to 10-14 days and then consider how long it took. If it takes 10+ days I'd not drop below 5mg for now. If it is quick I'd risk 4mg . 3mg is too little - but how much too low is difficult to say, you'll need to test it out a bit

[Rosina1871 in reply to PMRpro]

Many thanks. Appreciated

[piglette]

I normally increase by 5mg for a week or so to really hit the PMR on the head then drop back in two steps to ensure everything is OK. Try going to 5mg and see how you go.

[Hidden]

Hello, like you I too am experiencing pains when I reached 5mg....I taper by 0.5mg per month. 5 and below are tricky numbers for some. So I decided to rise from 5 to 6...been on that for eight days today. I'll remain on it for a while then drop back to 5.5 for a month then try 5mg again. What a pain (literally PMR is) Good luck

Anne

[DrRon in reply to Hidden]

do you simply split 1mg pills ?

[Rosina1871 in reply to DrRon]

Yes I do and only reduce by 0.5mg every four to six weeks

[Hidden in reply to DrRon]

Yes, like the other ladies I split a 1mg with my pill cutter. I've had to start using it again. I managed to get down to 5mg when pains started again. Had a blood test to try and calculate how high CRP/ESR had gone up and how much more of Pred I should use. Fortunately, CRP only 5.4 last blood test was 2 and ESR is still 2. I tried 6mg for 10 days but now increased back to 6.5mg. Wondering if this meaning I won't be able to get any lower than this. Anyone out there that can tell me they've managed ?

[Rosina1871]

Thanks for all your replies. I’ve been reducing by 0.5mg every four to six weeks . I’m going to take it really steady

[Pippah45]

Have you thought of a .25 change? It's a bit of a pain but with a pill cutter .25 decreases work better for me at lower doses. I went for .25 decreases at 7.

[Rosina1871 in reply to Pippah45]

Thanks I may try that. I have a pill cutter

[Pippah45]

It's worth a try as when I reduced from 7 to 6.5 I felt awful. Many aches returned. Stuck at 7 for ages as was too scared! Then one of the great peeps on here suggested. 25 reduction.

[Rosina1871]

Good suggestion

[PMRnewbie2017]

Do you record your doses and symptoms every day? I still do even after nearly five years because it is helpful in situations like these when the "men in white coats" want facts. I have also noticed that by continuing to take my Pred very early in the morning 1am-4am (whenever I wake up for a bathroom visit) I can forestall any return of symptoms and hit the inflammation early. Today I didn't wake up until 6am and felt a bit sore. It took until midday for me to feel all OK again.

[Rosina1871]

No I don’t record my symptoms. I just record in my diary the different stages of taking my pred. Thanks for your reply

[Boss302Fan]

If I read your post correctly my interpretation is once you reduced from 5 mg you started having pain? If correct, should have immediately returned to 5mg.

If it were me…I’d go to 8mg and hope that within 2-3 days the pain is gone then return to 5 mg for a week or two before attempting another reduction. I’d not decrease more than 0.5mg.

What tapering methodology are you following? I strongly recommend DL’s Simple Taper it allows a gradual reduction, and if you pay attention to any hint of a flare and immediately return to your old dose the pain doesn’t escalate and within a few days it’s gone.

I used a literal 10% reduction. To this day I don’t know if I had any symptoms of adrenal insufficiency. I had on 3 occasions while tapering from 3mg a bout of nausea. I immediately stopped what I was doing, sat down, and within 15 minutes it passed. When I reached 2mg I asked my Rheumy about getting a Basal Cortisol test. He said not necessary as I wasn’t having any significant signs. I asked my GP for the test and she agreed. Result was dead center of normal range. But at least I was no longer tapering in the dark. Tomorrow will start week 1 of DL’s Simple Taper where my Old Dose / New Dose is 0.25mg / -0- (like I said, I did a literal 10% reduction). I wish you the best and if hurts, don’t procrastinate else it only gets worse and takes longer to get it back under control.

[Rosina1871]

Thanks for your reply. Appreciated. I have been reducing 0.5mg since getting down to 10mg. I felt ok on 4mg but decided to up it to 5. I feel better already. Aches and pains diminishing after two days. Will stay on 5 for at least 6 weeks. Thanks again and good luck with tapering

[PMRpro Ambassador in reply to Rosina1871]

Remember you aren't reducing relentlessly to zero - you are looking for the lowest effective dose at the moment and you may be there. It doesn't mean you won't get lower - just not yet. For most people the disease activity in PMR reduces fairly steadily but slowly over time - and there are things that poke it into life like stress and falls or illness. But you can't push it - it will bite back.

[Rosina1871 in reply to PMRpro]

Thanks for your advice. I’m feeling better on 5mg. Just a little achy in the shoulders. If that persists I will up the dose to 8mg for a week and then drop back to 5. I appreciate your help

[Rosina1871 in reply to PMRpro]

Sorry to labour the point, I’ve taken 8mg today and thought I would try that for five days and if all is well drop back to 4. I was on 3mg when symptoms started to show . Does that sound reasonable?

[PMRpro Ambassador in reply to Rosina1871]

Does to me yes - 3mg wasn't quite enough but it is possible you might need a bit more but only you can work that out. The stress of the ongoing heat won't help.

[Rosina1871 in reply to PMRpro]

Many thanks. So good to get some reassurance

[DrRon]

I am at 3mg since Aug 13 but with each 1mg reduction every two weeks for past two months, I am in absolute agony through night and mornings and generally stiff and hurting all day. There have been days I have said I do not want to live. Will see Rheumy tomorrow and saw GP today. Additional symptoms of swollen wrists, hands, and fingers and ankles have made my GP suspicious of Immuno-arthritis there. Clearly my inflammation is not under control. My PMR pain and stiffness has now returned to hips, saddle, knees, elbows, shoulders and sometimes neck. It’s 2.5 yrs now .. 4 attempts to taper.

[Rosina1871 in reply to DrRon]

I have been reducing 0.5mg every four to six weeks by cutting a 1mg pill with a pill cutter. Sounds as though you have been reducing too quickly and the inflammation is building. I also had swollen hands when my pmr was at its worse . Good luck with speaking to your GP

[PMRpro Ambassador in reply to DrRon]

You aren't heading relentlessly to zero - you are titrating the dose to find the lowest effective dose for YOU. I would say you have overshot that dose by some way and there is no point taking too little pred, you might as well stop altogether. If you aren't on enough then a little (or big) bit of inflammation is not dealt with every day. Over time it builds up to a level that causes symptoms, just like a dripping tap eventually fills a bucket and it overflows.

Many rheumies, perhaps more than GPs though they do it too, fall into this trap and force patients to reduce too fast and too far, sending them back to the state they were in that sent them to the doctor in the first place. By doing so they cause unnecessary distress to the patient and often even making them take more pred than necessary because of the flares. Or then "diagnosing" them with something else because they don't understand how PMR works. They will try DMARDs - which won't work for most PMR management gone wrong.

And 2.5 years is just the start I fear - only about a third of patients are through and off pred in 2 years. Lots more are on a much longer pathway. Prof Sarah Mackie is on a crusade to destroy the "2 year PMR myth" - and she is probably the most knowledgable rheumy in the UK when it comes to PMR.

[DrRon]

Thanks PMR Pro for taking time to write an insightfully informative piece to me. I saw my GP Monday. I trust him. I saw my Rheumy Tuesday. Rheumy and GP believe PMR has evolved to RA or (autoimmune arthritis) with respects to fingers, hands, wrists and feet. Possible I’ll grant, what choice do I have? GP would have bumped me from 3mg Pred to 7mg. My GP defers to my Rheumy. She has responded to my agony with this bump up of both MTX and Pred:

1. Prednisone 5mg pills.

a. 4 tablets per day for 3 days, 20mg

b. 3 tablets per day for 3 days, 15mg

c. 2 tablets per day for 3 days, 10mg

d. 1 tablet per day for 2 months, 5mg

2. Methotrexate (MTX) 6, 2.5mg pills (15 mg) per week for 3 months . (had been on 10mg)

3. Folic Acid, one 5 MG pill per week for 3 months

Then following blood tests and how I respond to the programme, Rheumy will reassess.

The theory seems to be deal with my immediate bad pain, up my MTX to 15mg weekly, and then trust that it assists me with Pred at 5mg for a sustained period. I get it, each patient may be treated differently .. so I cannot help feeling like an experiment.

[PMRpro Ambassador in reply to DrRon]

One 5mg tablet of folic acid a week is the lowest possible dose alongside MTX. For many patients it simply isn't enough to manage the MTX side effects - so don't be afraid to ask for more if you feel it would benefit you.

Hopefully the MTX will help if it IS RA - it is possible. LORA can present identically to PMR and there is no way to tell the difference in advance. These may well be the "PMR" patients who respond well to MTX. Or there is a form of PMR that really does respond to MTX. Who knows!