Another flare while tapering. Please help re ster... - PMRGCAuk

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Another flare while tapering. Please help re steroid dose

HelenDaisy
HelenDaisy

I'm a fit 67 year old, diagnosed with PMR in April 2019, due to massive sudden stress. Treated fairly fast on 15mg Pred which worked quickly. Since then developed Type 2 diabetes and increasing osteoporosis. Have tried to taper three times, this is the fourth. Tapering on DSNS method to 11.5mg this week (I'm only half way through.) I also have spinal disc problems and bad sciatica, being treated by physio.

My routine rhuemy appt was shifted from May to Nov due to Covid19. issues at the hospital. So I've seen no rhuemy since last Nov, when I appeared to be doing well.

I'm now having a big flare, tiredness and awful leg pain. I'd put it down to sciatica, but I think it's both!

My question is: I've upped my pred to 14mg today, hoping for relief and proof that's it's PMR not sciatica. Should I go full out and take even more fore a few days before going back to 12mg which is where I'm fairly comfortably?

It's so disappointing, I feel I'll be like this forever: the snakes and ladders, ups and downs of PMR and Pred!

Thank you in advance for your knowledge and advice

Helen

40 Replies

Boy. I think, if it is only on one side... that it is the sciatica. ..and not the pMR. I am usually a big proponent of upping the prednisone a bit but maybe not... I had a flare that replicated PMR exactly from the very first time I had it... and I went up from 2 to 7 and there was no getting back to 5 or so in a few days... I got stuck back up and had to start DSNS again.. adding 10 months to this mess. (I do .5 a month) .. so I would try and get back to 12 and STAY there during this stressful time and do the physio etc. Also have you added some Calcium and K2M7 and D3 for your BONES (I too have osteoporosis) and look at whatever HeronNS has posted about osteoporosis! and With the diabetes I am sure you know what to eat but try not to let the prednisone rule the weight. I did and losing the 15 lbs was so hard that this time having gone back up I am being super strict with my diet. SO HARD!! GOOD LUCK. Take my advice with a grain of salt and wait for wiser minds. But good luck!!! Breathe. (If you look on my profile I have posted a RELAXATION link I made for a course.. free. it might help during these stressful times!)

T Jug s is fur your reply. was actually doing a meditation as you were replying

I’ve been thinking it’s sciatica but it’s now occasionally on the other side too. I think it could be both Sciatica and PMR! This overall gluteal and hamstring pain, plus fatigue is worrying. Could it be a PMR flare due to the stress and pain of the disc problem???

And like you, I’ve struggled to get down once I increased the pred for a flare To think I was once on 9mg.....

I’m on Metformin for diabetes caused by pred. And alendronic acid, calcium, Vit D. Zinc. Magnesium. All the pills!

Feeling very miserable and lonely just before I go on holiday. I can’t even play with my puppy which makes me sad.

At least the Grand Prix is on later. :-)

PMRpro
PMRproAmbassador in reply to HelenDaisy

You are assumig the pain is a disc problem? It may not be: tight and spasmed muscles are quite as able to cause sciatic pain and it is not unusual alongside PMR in the form of myofascial pain sydrome which is caused by the same inflammatory substances but in MPS they are localised in the muscle fascia and knots of hardened muscle fibres in large muscles whereas in PMR they are systemic.

PMRpro
PMRproAmbassador

"Have tried to taper three times, this is the fourth."

You are never tapering steadily and relentlessly to zero - you are looking for the lowest dose that gives you the same result as the starting dose. You appear to have pushed your luck in that respect and that has led to flares - however slowly you taper you will not get past that level and how long it will take to get below that level is in the stars - everyone is different in their PMR, their response to pred, how much pred they absorb or need for their weight, what they expect to be able to do on a given dose. If you work - you may need more for example. Stress of any sort may mean you need more. Lightweights usually reqiores less than their cuddly peers. And the flare MAY be an increase in underlying disease activity rather than you having overshot the dose you need with stable conditions. The more often you get a flare, for whatever reason, the harder it may get to reduce the dose the next time.

If you have encountered difficulties at about the same dose each time, that is your body sending you a clear message. Don't ignore it.

Is the leg pain bilateral or one sided? Do you have low back pain? Any back pain?

HelenDaisy
HelenDaisy in reply to PMRpro

Thanks for your thoughts.

I do have previous spinal problems and treatment so my assumption (and my physios) is that it is the same issue. I’m probably going to have to see my rhueumy privately to sort out the sciatica from the PMR. I’ll have an X-ray too.

I’ve had one sided sciatica for several weeks but this is a different bilateral pain. I actually have both types of pain which is confusing and miserable.

I get your point about finding and staying on the level you are comfortable with (12mg) but aren’t you supposed to try to taper once comfortable? I will never get off it otherwise! I do understand it’s not a race.

PMRpro
PMRproAmbassador in reply to HelenDaisy

Yes - you are to taper from the starting dose once the symptoms have settled but only until the symptoms reappear after a tapering step - which should NEVER be more than 10% of the current dose once you are down to about 15mg. You also need to remain at each new dose for up to a month to be sure it is still enough. Going faster will only mean you get symptoms back and have no idea where it went pear-shaped so you go back to the start again and again.

If 12mg is where you do well, give it a couple of months and then try 1/2mg on a slow taper. If that works, try the next half. Some people need more than others - and some just can't taper at even 1mg per month. I struggled for 4 years to get to 10mg - and even now I have been barely scraping though at 12mg after 11 years on pred. There is a growing group with a similar problem - but you are at 15 months, plenty of time yet. Maybe your rheumy should be checking there is no sign of anything else in the background - PMR isn't the disorder itself, it is the name for the set of symptoms, and there are several potential causes which can also respond to enough pred.

HelenDaisy
HelenDaisy in reply to PMRpro

I have stayed at 12mg for 2 months after the last flare. And take about 5 weeks to reduce 0.5mg. ( I’ve taken advice from here!)

Is it a good idea to have 3 days at 14 and then go back to 12mg for a few months again so I’m pain free before I start a very slow taper?

HelenDaisy
HelenDaisy in reply to PMRpro

Sorry. One more question and I’ll go!! 😁

If an additional 2mg prednisone doesn’t ease my symptoms today, can I assume it’s not a PMR flare, but sciatica instead?

PMRpro
PMRproAmbassador in reply to HelenDaisy

Really difficult to say - the usual recommendation from expert rheumies is to add 5mg to the dose where you flared for up to a week. It may take a good dollop and for more than a few days.

Had you been doing anything different in the last week or so? Not tripped or another minor accident? Not lifting or carrying something heavy?

HelenDaisy
HelenDaisy in reply to PMRpro

Nothing different. I teach 3 exercise classes per week on Zoom so I am as active as I can be. Just my sciatica getting worse and worse.

It’s so scary to up the dose for a week, thinking you’ll have a struggle to get down again.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to HelenDaisy

“Nothing different. I teach 3 exercise classes per week on Zoom so I am as active as I can be. Just my sciatica getting worse and worse.”

Teaching 3 exercise classes a week, although commendable, may not be doing your PMR much good.

How vigorous are your exercises? Gentle is good for PMR, but not rigorous nor repetitive.

I do 2 for older participants and 1 more vigorous but I've done them for 40 years and know how to manage my movements. It would cause more stress to stop than to continue carefully!

PMRpro
PMRproAmbassador in reply to HelenDaisy

Hmmm - but for the last 40 years you didn't have PMR ...

Sorry to veer sideways DorsetLady. Your remarks about exercise caught my eye. I am tapering from a starting dose of 15mg via 12.5mg and am now at 10mg. But I cycle most days and it is rigorous exercise as I am training for a long distance charity ride (500 miles) in early September. I am left with aches and pains which I attribute to age and pushing myself. However I am always wondering if any of the aches and pains are a symptom of the body not liking the taper, although the pain tends to be one-side only so I conclude not.

I haven’t been told to take it easy and it’s not in my nature to do so. Should I rethink this?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to 51Highland

I would agree if one sided unlikely to be PMR as such, but never say never! Might be worth easing off, or at least slowing down on the tapering until you’ve completed charity bike ride. Well done on that, but you are probably over-exerting muscles at the moment.,

Thank you. Sound advice.

PMRpro
PMRproAmbassador in reply to 51Highland

Should you rethink taking it easy? I suppose it is all relative! As long as what you are doing is not resulting in pay-back the following day it is fine. But it sounds as if it is.

The pred is relieving the inflammation - and so the symptoms associated with that. But it has no effect on the actual underlying cause of the inflammation, an autoimmune vasculitis (inflamed blood vessels) which continues in the background, attacking various body tissues in much the same way a flu would. That seems to affect the oxygen supply to the muscles, though the mechanism isn't clear. You sound not to be observing rest days during training - an essential component of training at any time and particularly with PMR. If you are setting off on another dose of training without having recovered from the previous one you are at risk of exaccerbating DOMS so that your muscles never really recover and "train". And in the long run that MAY result the opposite of what you are aiming for and long term damage to the muscles.

It can be done and member Nick will be happy to discuss training I'm sure, he cycles and has done all along. I'm not sure of his views on training and reducing though.

51Highland
51Highland in reply to PMRpro

This is SUCH a great site. Thank you (both) for such useful, fulsome and interesting replies. Actually I do take (some) note of the recovery time advised and I also indulge in ‘active recovery’. Pre-PMR and pre-anno domini, muscles and joints would feel as though they had been worked but recovered after rest. The same happens now but the pain during hard exercise is very reminiscent of the PMR but without the feeling of inflammation. I will check on Nick and thanks again.

51Highland
51Highland in reply to PMRpro

Just one thing. How do I find Member Nick?

PMRpro
PMRproAmbassador in reply to 51Highland

healthunlocked.com/user/nic...

PMRpro
PMRproAmbassador in reply to HelenDaisy

In a week you should be able to drop straight back without tapering, PROVIDING you haven't had a flare in disease activity. Then you might need more but if it is just an overshoot it should be fine.

HeronNS
HeronNS in reply to HelenDaisy

Sciatica originates in the back when certain spinal nerves are compressed. I found physio treatment worked wonders. You could try applying heat (yes even in hot weather) to your lower back. Do any of the exercises you teach work your back intensely? Maybe some muscles have been pred/PMR weakened and you need some gentle targeted exercises to strengthen them again?

HelenDaisy
HelenDaisy in reply to HeronNS

I'm having regular physio, but it's not really helping. I'm certain I have nerve compression again.

HeronNS
HeronNS in reply to HelenDaisy

I was given exercises which work on my spine, I guess, to relieve the pressure. Also my physiotherapist did, back in early days, "dry needling" which she said would reset the electrical signals in the muscles on either side of my spine which she said were "like bricks" - they were very tensely spasmed. Seems to have worked. I also used to, off my own bat at home, lie on a very hot hot water bottle against my lower back, or my hip, or buttock, whatever seemed to need it most, and this also helped. She has also given me low level light therapy (Bioflex), but I understand this is not widely available in the UK so I no longer suggest people try to get it.

HelenDaisy
HelenDaisy in reply to HeronNS

I've had needling too. My physio is trying everything! He's very good at spinal work, but I'm not improving. I am also very tense and my pelvis pretty much locked. This is apart from PMR. It's hard to know what to do. But I'll keep my chin up: I've had multiple surgeries, including cancer. Keep on keeping on....

HeronNS
HeronNS in reply to HelenDaisy

Hmmm. I know they like one to keep moving, but maybe you need a break from what you've been doing? Some other sort of exercise at least because maybe there's a low grade injury which isn't getting better because whatever you're doing is inadvertently exacerbating it? Just a thought. A holiday!

HelenDaisy
HelenDaisy in reply to HeronNS

We're off for a holiday in Kent next week! I had the same thought. I need a break after the last 2 years: my husbands cancer and PMR in 2019, then Covid19 this year. It's been so tough. Trying diet, meditation, physio. And a new puppy!

HeronNS
HeronNS in reply to HelenDaisy

Oooh, a puppy! And a holiday! Have a lovely time.

PMRpro
PMRproAmbassador in reply to HelenDaisy

I have also had needling. But it alone isn't enough.

wbiC
wbiC in reply to HelenDaisy

I'll get sciatic back pain from too tight a waistband (which, is typically due to rose tinted glasses with respect to my waistsize and choosing slacks/belts).

Whippetygirl
Whippetygirl in reply to PMRpro

Love the bit about the heavy lifting, I think that is what I think brought on my sudden relapse ( dog food bag ) I think we all need to think before we do silly things.

PMRpro
PMRproAmbassador in reply to Whippetygirl

It is so easy to do and not even register it!!!

Hidden
Hidden in reply to HelenDaisy

You can't assume that pain relieved by pred is PMR pain. Pred works for many kinds of pain. Some people get tremendous relief of pain caused by sciatica by taking pred --- I was one of those people.

I once showed up at the hospital with horrible sciatica accompanied by foot drop and dragging my leg. An MRI confirmed a disc bulge and advanced arthritis in my lumbar spine. A spinal surgeon was making preparations for urgent surgery which would have fused my lumbar spine. I was given all kinds of pain medication which only put me to sleep for an hour or two but then the pain returned. At one stage I increased my pred dose and the pain eased. Eventually the pain went away by increasing my pred dose.

The spinal surgeon ordered an EMG and nerve conduction study only to "delineate the damage" before doing the surgery on my lumbar spine. By that time the pain was gone. Ultimately, I got a second opinion from a neurosurgeon who did my surgery for trigeminal neuralgia. He advised holding off on the surgery if I wasn't having any pain. That was 5 years ago and I still haven't had my lumbar spine fused.

My rheumatologist reviewed the whole incident. She didn't think upping my prednisone dose was the best solution and would have advised a localized steroid injection. She was glad the pain stopped though.

Pred also worked reasonable well for excruciating trigeminal neuralgia in the years leading up to that surgery. I was using the electric shocks in my face as my alarm bell for the presence of inflammation.

HelenDaisy
HelenDaisy in reply to Hidden

Wow you have had it tough! A friend is having trigeminal neuralgia surgery next week. Glad to hear it worked for you.

I have had previous cortsone injections in my cervical and lumbar spine for spinal nerve compression. I know I have arthritic degeneration of my discs too, with osteopenia. I think that's what I need again, but I'm on the NHS waiting list so it could be months. I just don't know how to manage both conditions at the same time. And which pain is which!

My doctor put me up to 30mg for 4 days when 15mg was not working 100%. That fixed it. Now tapering VERY VERY slowly. Maybe try that?

HelenDaisy
HelenDaisy in reply to Loyd

I’m waiting for my rheumatologist to call. I hope!!!!

I took 20mg this morning which has made it bearable.

Hi, I have had PMR for 4 years, I did have sciatic, I was advised to see a podiatrist and was given orthotics for my shoes, turns out I had one leg slightly shorter than the other, since I started using the orthotics 3 years ago I have not had any problems. Hope this helps.

You should text your rheumatologist and let them know what is going on so they can advise you.

HelenDaisy
HelenDaisy in reply to Badpmr

I am waiting for his call. Otherwise I’ll speak to my GP. It’s so hard when they are all too busy. There are no appointments until end of September.

Update: my rhuematologist never called. My GP's advice was good however. 'If 20mgs Prednisone made no difference, the pain isn't a flare, it's sciatica.'

So, more analgesia (Pregabalin, NSAIDs), continued physio and exercises. I'll go back to my previous 12mg Prednisone and stay there a few weeks before trying to taper VERY slwly.

Thank you all so much for helping me out, and making me feel not alone.

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