PMR Aching again! Should i be worried?

[Zebedee44]

Sorry to be such a worrier but I'm new to this and don't know what to expect when reducing pred dose. I've started to taper from 20mg to 15mg after three weeks and tonight I feel the same old aching in my neck, shoulders, upper arms, shins and upper thighs. I am wondering if this is to be expected, also should I be worrying about GCA every time my head hurts or can I be fairly confident that the introduction of steroid will prevent that?

[PMRpro Ambassador]

" I've started to taper from 20mg to 15mg"

What do you mean by that? Have you gone straight from 20 to 15, are you alternating doses, or what?

[Zebedee44 in reply to PMRpro]

Yes, I had no trouble tapering from 25mg down to 20mg, where I stayed for 14 days, but this is day 3 on 15mg and I am feeling the aches.

[PMRpro Ambassador in reply to Zebedee44]

That was still well above the normal PMR starting dose and you hadn't been on pred for long. Top experts in the USA said some years ago that a reduction step in a taper should not be more than 10% of the current dose to avoid such problems. At 20mg - that is just 2mg.

It is still early days - and it may take a bit longer for the PMR to fade enough to let you get to 15mg. Try going back to 20 and then go down in steps of not more than 2.5mg, even less is better.

Had you increased your activity level at 25/20mg because you felt so much better? Some of that is just the pred dose - higher doses make some people like Duracell bunnies! When you are reducing do try to keep out of stressful situation - activity counts as that too. We used to say to clear the desks and go into retreat the week of a reduction. Give your body a chance.

Or use this approach:

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Hi,

Better idea to try smaller steps, 20mg to 15mg is too big for many.. Recommended reduction is not more than 10% of your existing dose, you are try to reduce by 25% - no wonder you have a return of pain.

Try going from 20mg to 17.5mg you might find easier, and if necessary try reducing over a few weeks rather than go from old dose one day to new dose next day. That way you'll hopefully stop the withdrawal effects as well.

[Zebedee44]

Such good advice, thank you, and yes, I have been a Duracell bunny! And six weeks post hysterectomy as well, so back to the things I hadn't been allowed to do, like drive the car, use the hoover, lift things.

As I have reported previously, my doctor first prescribed 50mg for three days, God knows why, and I have been getting progressively more manic as the pain reduces, so he is very keen to get the dose of pred down rapidly. But this drop must have been too big and too fast, so I will have to think about a slower taper.

Always grateful for the advice from the "pro's", Thank you

Chrissie

[markbenjamin57]

Hello Zebedee44

Welcome to this forum, and thanks for your post. You don't need to be sorry - that's what these forums are for (support / advice)!

I can well-relate to what you say, thinking back to when I was first diagnosed with PMR (2 years ago) and totally in the dark about the longer term implications of the condition itself - and also the precarious journey of managing the steroid tapering process. It's a real learning curve!

Briefly (maybe not so, as usual..!), and to answer your concerns as best I can, in context:

1. Steroid reduction / 'tapering' in our (PMR) context is proven to be very much a Trial and Error process, in contradiction to some GPs' and even Specialists' advice. The main wisdom is 'Slow, Gradual and, above all, Symptoms-led'. There is a wealth of expertise and experience on this forum about the best tapering methods, (e.g. DSNS / 'Dead Slow Nearly Stop') or equivalents to minimise the risks of the 'Flare-up' symptoms you describe. Try to spend some time trawling through the 'Topics' section - it will be worth it.

Reading between the lines, have you reduced from 20mgpd to 15mgpd Pred in one go? If so, it's likely that you've reduced by far too much, and far too quickly (approx. 33%) in one step-down (see below). If so, no wonder you're getting some 'reaction' as your body's sleepy adrenal glands are protesting about being pushed into action (when far from ready?) after giving-in to the external cortisol from the Preds. That said, you should refer to your GP in your own health context...

The best wisdom with Pred reduction is to avoid the (often prescribed incorrectly by GPs) periodic and / or too-fast, too sudden step-downs in steroid dosages by plotting a VERY gradual, incremental reduction 'gradient': and, if you do step-down periodically (as opposed to using the DSNS method), it should be by a maximum of 10% of the previous period's dose - sometimes even less.

Patience is also Key in the PMR / steroid management process. It can be very much a game of Snakes and Ladders symptoms-wise at the best of times, and symptoms can be affected by many factors such as Stress, Over activity (in the PMR context), comorbidities and even the weather - or a combination of all of these!

Try to remember that your body (and mind) are doing 'battle' with a quite serious auto-immune illness which has a seriously debilitating effect on you - and some pretty nasty symptoms even when (or in conjunction with being?) managed with these powerful steroid drugs. It really is a catch-22, as many here will report.

2. As for potential GCA symptoms (far more serious..): if in any doubt at all, HAMMER HARD on your GP's door for tests and a quick diagnosis. Although not an assumed consequence of PMR, GCA can quietly creep-up with catastrophic damage to one's sight if not caught in time. You'll get some quick replies on this topic especially - sit tight.

Again, you'll find a wealth of trustable information and advice here - my best advice is to arm yourself with reliable facts and information about both conditions a.s.a.p. if you are worried / confused, and you can at least approach your GP for help from an informed point of view if he / she is less well-informed about PMR / GCA (as are some, unfortunately).

I've no doubt that you'll soon receive a barrage (!) of kind and helpful responses to your post from many here who have personal experienced and / or expert knowledge of both of these health conditions. You're in good company!

Fingers crossed for you in the meantime

MB

[Zebedee44 in reply to markbenjamin57]

Thank you for your comprehensive reply, and for welcoming me to this forum, which I am finding extremely helpful and supportive.

My reading of Kate Gilbert's and Dr Dasguptas very different books have left me with some questions concerning the risk of GCA developing after treatment for PMR has commenced, and the possibility of a misdiagnosed cancer.

These past few months have been a complete roller coaster medical nightmare for me and the obvious symptoms of PMR have been overlooked while I underwent an urgent hysterectomy, all the while trying to subdue the pain of a prolapsed disc with huge doses of gabapentin, without success. Meanwhile my ESR was over ninety and my C-reactive protein was seventy.

Evidently my bloods are looking better, and my anaemia is gone, S I am very hopeful we are moving now the right direction. I feel more like the old me, and I'm looking forward to getting back on track. It's great to get so much support from this forum.

[navejasjoe]

My wife was started at 15mg, and was reduced to 12.5 two months later, then 10 etc. Then, when she was told to alternate daily between 10 and 7.5mg, the pain came back. Unfortunately, the stupid rheumatologist insisted that she keep reducing down as far as 2.5mg daily only because the blood tests showed no more inflammation. With the help of her GP and Orthopedic, she has gradually gone back up to 10mg and is still waiting to get back to the "no pain zone".

My wife's pain areas are like yours in the shoulders, upper arms, but not in the neck, nor shin nor upper thighs. She also has pain in the shoulder blades and upper back of her legs, just below the buttocks.

Fortunately, she has not had headaches.

Joe

[Zebedee44 in reply to navejasjoe]

I too have pain in the upper back of my legs just below the buttocks, but did not know how best to explain where it is, you did well to identify it. Also the front of my shoulders. Do these parts of the body have names?

[navejasjoe in reply to Zebedee44]

Those body parts probably have names but it is easier to describe them. This morning my wife's pain is worst around the arc of the shoulders and armpits. But it seems like you and my wife have very similar symptoms. We are hoping that the increase to 10mg since Saturday will have a positive effect soon.

[Zebedee44 in reply to navejasjoe]

How long has your wife being suffering with PMR ?

[navejasjoe in reply to Zebedee44]

Her symptoms started 13 months ago, at age 63. Her GP prescribed about 4 different painkillers in the next 4 months (none helped whatsoever), then sent her to an Orthopedic who injected her with cortisone in one shoulder and a week later in her hip. That only helped temporarily, but some blood tests showed inflammation and she was referred to a rheumatologist. On 5/24, she was put on 15mg Pred. Within 3 weeks, there was marked improvement. On 7/24, it was 12.5mg. On 8/25, down to 10mg. On 9/8, 10mg. She felt great about this time, hardly no pain. On 10/26, she was told to alternate between 10mg and 7.5mg. Shortly thereafter, into November, the symptoms came back. All the while, she was on this tapering schedule that took her to 2.5mg on 1/14. Her GP has increased her dosage incrementally. She is 3 days into 10mg, and hoping to feel how she felt the last time she was at 10mg.

[Zebedee44 in reply to navejasjoe]

Thank you. I am hoping a referral for a Rheumatologist comes through fairly quickly, so that all treatment options can be considered. Yo yo ing on pred seems a bit precarious when there are other non steroidal approaches, with perhaps less side effects.

I imagine there are posts on this site about other drug trials, and at this stage of my own diagnosis I would like to consider my options before the steroid side effects take hold.

[PMRpro Ambassador in reply to Zebedee44]

If what you have is PMR there are NO non-steroidal approaches. If there were - they would use them.

Some doctors will use DMARDs as steroid sparers - but there isn't a lot of evidence they work to achieve anything in "pure" PMR. A patient who has a mix or who has been diagnosed as having PMR but actually has late onset RA will probably get some benefit.

[Zebedee44 in reply to PMRpro]

Thank you once again PMR pro, I have been reading dR basguptas book and hoped that trials had moved forward with tocilizumab.

I live in the charming medical backwater of West Wales, so wasn't all that hopeful. Managing my diet, exercise and drug regime will be my way through this, I guess.

[PMRpro Ambassador in reply to Zebedee44]

The tocilizumab Phase 3 trial has moved forward. But that is for GCA and even its use for that is not going to be straightforward. There was an NHS consultation last summer and the end result was that TCZ should not be used for GCA but could be used for Takayashu's arteritis (to all intents and purposes the same disease other than age of onset). That is being reviewed I think but TCZ costs £12K per year - so is unlikely to be on offer for PMR for some time to come. OK, it may be possible to get a sustained result with perhaps 6 months of treatment - but that is still being looked at. There haven't been advanced trials of it for PMR yet.

And don't be misled - monoclonal antibody drugs are not sweeties either, They can have some potentially hefty side effects.

[navejasjoe in reply to Zebedee44]

Our rheumatologist believes prednisone is the only med for PMR. When my wife's pain was taking a while to completely go away, he prescribed plaquenil thinking that perhaps she had RA symptoms. Later on, he concluded she does not have RA, but wants her to stay on plaquenil concurrently with pred.

[PMRpro Ambassador in reply to Zebedee44]

Pain in that area (lower buttocks) is commonly associated with piriformis syndrome.

And both areas could be painful due to bursitis in the relevant bursae.

[Flateric1]

I am reducing 1mg at a time which works for me .... It may take longer .... but am happy with that x

[Marcy47]

I am reducing DSNS method, just got down to 9mg. I am still getting pain in thigh muscles after walking any distance and after sitting for a while. Could this be bursitis? Would painkillers help if it is?

[PMRpro Ambassador in reply to Marcy47]

If it is in muscles, probably not. I had thigh claudication as part of my PMR but it went as soon as I started on pred and has never returned. It may be you are just overdoing it and your muscles can't cope with what you are asking them to do.

Bursitis pain tends to be on the outer aspect of the hip, especially when lying on your side I found, and can be into the groin. I didn't find painkillers helped it at all - just doing less of the actions that trigger it!

[Zebedee44 in reply to PMRpro]

I was on a huge dose of gabapentin when the symptoms started in November 2016 and thought it was that causing the pain and stiffness , or my statin dose. I certainly had that bursitis pain then, PMRpro, as well as piriformis pain. The pred has certainly helped with most of it and I am still on Fentanyl patches which should be masking any pain which is not PMR related.

I can barely remember a day without pain since last May when I thought I had strained a muscle in my back. A lot has happened since.