Upping my steroid dose? Can I do more harm than good?

[Tiggy70]

Hi, I’ve got myself into a real mess with my PMR and I’m unsure how to move forwards. Basically I under dosed myself with Prednisolone over Christmas 2022 by mistakenly marking up some 1mg tablets as 5mg. I should have been taking 10mg and instead only took 2mg. I felt terrible but thought I had picked up a nasty virus. I discovered my error on 13 January and have been taking 10mg since then on the instruction of Rheumatology (they didn’t want me to go higher than 10mg). I complicated the issue by overdoing things in my garden 2 weeks ago and set off aching muscles in my arms and shoulders. I thought it might be DOMS but I’ve been taking things very easy for two weeks and the aching still persists.

I guess my question really is am I having a flare because of under dosing for over two weeks at Christmas and the start of the new year? A big part of me wants to up my steroid dose to 14mg for 5 days and see if things improve then drop back to 10mg. My thinking is that if the increase for 5 days doesn’t help the aching then maybe it’s not PMR but something else. I do have osteoarthritis in my hips, spine, shoulders and fingers which again complicates things.

Am I going to do any harm to myself if I up the steroids for 5 days? (This would certainly go against the advice of the Rheumatology dept.) I know yo-yoing steroids is not good but I just want to feel better and get back to a level playing field. After 2.5 years with PMR I know how complicated this illness is and how we all react differently but I feel at my wits end and don’t know what to do next. Thank you Tiggy x

[DorsetLady PMRGCAuk volunteer]

hi

Guess you have tried painkillers for suspected DOMS -and they didn’t work .

If so, then think your only option is to try the extra as you suggest -and 5-7 days won’t go you any harm.

Hopefully the opposite -and fingers crossed it sorts things out for you.

[Tiggy70 in reply to DorsetLady]

Hi Dorset Lady, thanks for your advice. I tried Paracetamol for a few days and on one day took a couple of doses of Ibuprofen but neither helped. Weirdly the aching seems to improve as the day wears on. I’m trying to move about as much as I can without overdoing it. I think I’m going to try the extra dose. We’ve got a a weeks holiday booked in Egypt in 3 weeks time for some R&R and some warmth thinking it might help me but as I’m feeling at the moment I’m worrying about the journey 😕

[DorsetLady PMRGCAuk volunteer in reply to Tiggy70]

Well you want to be okay for your holiday, so think you need to ty the extra...

[papadapadoo in reply to Tiggy70]

The only NSAID that does anything for me is Naproxen Sodium (Aleve), which does take the edge off the pain.

[Temeraire]

Oh dear. Sounds to me like you should have gone higher than 10mg for a few days when you discovered the mistake to clear the buildup of inflammation before dropping back to 10mg. I’d do that now I think if it was me. Good luck.

[Tiggy70]

Hi, thanks for your reply. Yes I think I should have upped the dose when I discovered my mistake. I’m always nervous about going against Rheumatology’s advice although if it was up to them I would still be trying to reduce each month despite the pain! 🌸

[PMRpro Ambassador]

If you needed 10mg and then underdosed for days, going back to just 10mg was unlikely to work well - you have to spring-clean first before you can go back to dusting. You are fine taking 5mg more for up to 2 weeks.

DOMS can take a while to settle with our poor bashed muscles so it could still be doing something.

Have you requested airport assistance for the journey? Do you have far to get to the airport? Where are you flying from?

[Tiggy70 in reply to PMRpro]

Thanks PMRPro. We are going to Hurghada in Egypt from Birmingham airport. The journey from home to airport will take around an hour if the traffic is good and the flight normally takes takes just over 5 hours. My OH will be pulling our luggage along although we won’t be taking much just swimwear and evening attire. It’s an adult only hotel which we have been to three times in the past before Covid struck so I know what to expect there. I haven’t requested airport assistance as the gates at Birmingham aren’t that far to walk to. I’m going to increase my steroids tomorrow. Thanks, Tiggy 🤞👙☀️⛱️

[Bluey-1 in reply to Tiggy70]

Airport assistance at Birmingham is excellent. You can just pick up a mobility scooter if you want and go at your own pace. I find the airport stress sets me off and struggled on the first flight I took by refusing a wheelchair and ambulift on the outward journey. Really hadn’t come to terms with the reality and unpredictability of GCA. By the time we’d got to the Ryanair gate waiting to board I was wondering - is this holiday a good idea? Have just booked airport assistance for a holiday in May. Excellent service by the budget airlines.

[Tiggy70 in reply to Bluey-1]

Thanks Bluey-1, I’ll check it out 🌸

[Hildalew in reply to Tiggy70]

I think Bluey has snuck a very important point in her post by mentioning 'airport stress'. I love planning trips abroad for myself - (some of them do actually happen) but I do have to be firm with myself about basing the plans on the reality of how I am likely to feel.

In the comfort of your own home in your choice of chair, it is easy to forget all the stress points that may be involved in the actual travel- meeting all sorts of deadlines, making sure you've got all the bits of paper/or stuff on your phone, waiting in queues, sorting out where you have to go, how far you have to WALK (or get a wheelchair for) - enough stress to trigger a full-blown flare.

Please be sure to take a good stock of Pred with you and have a great time.

[Tiggy70 in reply to Hildalew]

Thank you. It must be so much more stressful travelling alone. I travelled alone to the US from England 15 years ago when my granddaughter was born. I had to change planes and was a nervous wreck. These days my husband takes the strain and I just tag along behind 🤗

[christi48 in reply to Hildalew]

Interesting to read this as I have been contemplating traveling again, which I did a lot of pre-covid, but I have been worried how I will do with active PMR so I'm still thinking but not actually making plans, yet... So anxious to get back out there but the entire process is stressful, so I'm hesitant...

[Tiggy70 in reply to christi48]

Hi Christi, I know exactly how you are feeling re. holidays. I was diagnosed with PMR in August 2020 and Covid prevented holidaying for quite a while. When flights resumed my husband was raring to go but I was reluctant wondering whether I would cope. At first we started with short breaks in the UK. I paced myself and it was ok and I enjoyed the change of scenery etc. Since then we have had three foreign holidays involving flights. I would suggest you do a short haul to start with. Factor in lots of rest days and take it at your pace. If you travel with a companion make sure they are aware that you might not be able to keep up and will need rest days - go for it !! ✈️

[christi48 in reply to Tiggy70]

Thank you so much.

[PMRpro Ambassador in reply to Tiggy70]

Even if you think it is a short walk - don't be fooled! I think it was at Seoul airport I was assured it was a short walk - it WAS to security and it was on the other side too. And I had a priority pass. BUT so did half the rest of the world too - crew, who jumped the queue anyway, anyone over about 50, or with children, or who had paid more. I ended up standing for ages amongst yowling infants and that is what I CANNOT do, stand and too much noise. When we got to the waiting area at the gate there were no seats left - I brandished the priority pass and we were taken to another area, downstairs and closer to the plane with more seating. Had I had a wheelchair as I had booked - would have been far less unpleasant.

And Munich is another "fooled you" airport - it is quite a small airport and I really like it, nice shops if that's your thing and probably some of the best eating options you'll find, people come out from Munich for a meal! BUT when you come back into Munich, your plane might be at the far end gate to the right looking from the plane but the chances are your luggage will be at the far end carousel to the left. With a few escalators to negotiate. I only did it once! Never ever again without assistance - who actually take you to your car if you are in the carparks next to the airport itself.

[Tiggy70 in reply to PMRpro]

I’ve haven’t been through Seoul or Munich airports. For me the worst airport experience has been Heathrow. Last Christmas en route to the US it was a nightmare. We tried to check in on the flight 24 hours before. ‘computer said no’! We made sure we got to the airport with a good 2 and 3/4 hours to spare. We queued for an hour and a half to check in at a machine. Queued again to drop our bags off then another long queue through security. We were getting desperate for the loo and in need of a coffee. We eventually made it to the departure lounge only to find that the flight was boarding. The gate was 15 minutes away so we had to hurry. NOT the start to my holiday I was hoping for. I’ve been very reluctant to use airport assistance but I’m rapidly changing my mind!

[PMRpro Ambassador in reply to Tiggy70]

Once you are checked in you should be able to have assistance immediately - unless it is Heathrow which has an appalling record! I would route ANYWHERE to avoid Heathrow!!!! With assistance, you should fast track through security etc since the person supplying the assistance needs to be getting on with the job, not standing in queues - particularly useful in the USA and probably Europe now the UK is a third country. Airports vary - but most are pretty good.

[tempusfugi in reply to PMRpro]

I'm due to go on my first trip abroad since March 2020 at end Sept/beg Oct this year. That's UK to Sicily and I must say I already feel apprehensive. Don't really know why when I read about all the trips people are going on, on this forum!

I spose the fact that I don't like flying doesn't help but the other fact is, it'll be my first trip with PMR accompanying me. I have explained to my companions that I will need to take each day as it comes but I don't think they really understand and why would they - they see me as relatively fit, generally. When requesting airport assistance, do you have to explain your circumstances or just say you need it? I'm thinking that might ease my flight.

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

You don’t need to explain - just request it’s…it does make life so much easier…. As for others - you have explained what you may need to do, hopefully they will understand- but if they don’t, they don’t. But please don’t feel pressured to ‘keep up with them’… just enjoy you time away.

[tempusfugi in reply to DorsetLady]

Thank you for your advice, DorsetLady.

[Bluey-1 in reply to tempusfugi]

Definitely book airport assistance. I just had to state my condition.

[tempusfugi in reply to Bluey-1]

Thank you too, Bluey-1👍

[Maryis80 in reply to Tiggy70]

I feel a bit guilty sometimes asking for special assistance but for me wot PMR and husband wit Alzheimer's it really is essential

[MamaBeagle in reply to Tiggy70]

I'd definitely order airport assistance. A few years ago now, from Paris to Toronto. It was so easy. We got through passport and customs as if we were VIPs. Enjoy the trip!

[jules1955 in reply to PMRpro]

What is DOMS please?

[marionofnorwich in reply to jules1955]

Delayed Onset Muscle Stiffness like you get when you have run a marathon or overdone the gardening with or without PMR

[jules1955 in reply to marionofnorwich]

Thank you xx

[Louisa1840]

Tiggy, I am in a very similar position to you. I have got to a stage (after nearly 6years of PMR) where I just need to have some quality of life! So, I am upping the steroids (and YES, yo-yoing like mad) just to achieve that. I also want to accept some recent offers of work (I am an actor) and know the only way I can fulfil the roles is by upping my steroids for the duration. So it may be frowned upon but I am going to up my dose simply to do some of the things that I love. Otherwise I fear I may just get too rentful of this wretched illness.........

[PMRpro Ambassador in reply to Louisa1840]

It might be better to not reduce as far in the first place?

[Louisa1840 in reply to PMRpro]

Yes Pro I think you're right. I got right down to 3mgs 6 months ago &was fine for several weeks. Now I'm struggling on 10.

[PMRpro Ambassador in reply to Louisa1840]

The fact that you were OK for a few weeks and then flared is typical of being at a very slightly too low a dose. You may only have needed 1/2mg more to be fine long term but equally, it depends on how quickly you had reduced the dose and the size of the steps. Once you are at 5mg 1/2mg at a time every 2 months may well be all you can manage.

[Tiggy70 in reply to Louisa1840]

Hi Louisa, sorry to hear you are having a rough time. QOL is so important especially as we get older. I’ve accepted that my life will never be the quite the same as pre PMR plus we are all getting older. I just want to enjoy my twilight years and not worry about every ache and twinge. Good luck with your plan 🌸🌸

[GrannyJane]

Hi Tiggy, I completely empathise with you and went through a similar patch in January. After getting down to 2.5 just before Christmas I thought I was ok on this low dose, even started getting emotional for first time in over 2.5 years then wham! Going into January got the dreadful aches in neck shoulders and upper arms, in fact thought I’d been fighting Tyson Fury all night! Tried to ignore it at my peril and finally in February resorted to the wise flare procedure of my PMR guru, Dorset Lady. I have now been on 8mgs for 7 days and eventually pain free so hope to get back down to 2.5 over next week or two. I hope you manage to sort your dosage out and have a really lovely and restful holiday in Egypt. Get some soothing massages as well as lots of healing sun.

Good luck with the journey, keep taking little walks around the plane to ease stiffening muscles, the crew will understand.👍🧳🕶🌝🥂🛩x

[PMRpro Ambassador in reply to GrannyJane]

Not back to 2.5 - it wasn't enough. You go back to the dose above where the flare appeared or, if you had been pushing your luck and ignoring the signs, the last dose at which you felt good.

[DorsetLady PMRGCAuk volunteer in reply to GrannyJane]

Agree with PMRpro-not back to 2.5mg that’s where the issue was -so just above and make sure all okay before you try tapering to 2.5mg again…

[Tiggy70 in reply to GrannyJane]

Hi, this disease is such a rollercoaster isn’t it. Just when we think things are going well something happens to scupper it. I’ve just bought myself a t shirt with ‘one day at a time’ on the front. I’m going to try to follow that mantra as that’s how I’m living at the moment. I’m pleased to hear things are now going in the right direction for you. It’s so difficult not to get excited and rush through our dosing. I was doing ok with the PMR until last September when I had to have 2 shoulder surgeries in 8 weeks. I then stupidly messed up my steroid dose whilst away in the US last Christmas whilst at my son’s and under-dosed myself for over two weeks. Good luck with your reduction but take it slow and steady x🌸

[Sharitone]

I always find DOMS takes weeks to go away!

[GrannyJane]

Thank-you everyone for your support and advice. I will go back slowly to 3 then take it from there. I think I overdid it at Christmas on 2.5. had been ok on it up till then. Just when you think you are making real progress it turns around and it bites you in the bum! Well ever onwards and ever downwards🤗

[DorsetLady PMRGCAuk volunteer in reply to GrannyJane]

“Bites you in the bum”…surely does. 😳

[tempusfugi in reply to DorsetLady]

That's exactly where it bit me!

[PMRpro Ambassador in reply to tempusfugi]

Piriformis syndrome????????

[tempusfugi in reply to PMRpro]

Had to look that one up, PMRpro🤔 No, was definitely the pelvic girdle etc so was PMR...

[PMRpro Ambassador in reply to tempusfugi]

Mmmm - but piriformis manifests in the buttocks and is often part og PMR

[tangocharlie in reply to PMRpro]

Interesting, I'm just getting over a sacroiliac back injury (back went into spasm sitting for too long listening to a boring talk in an uncomfortable chair - 'Extreme sitting' LOL). The back pain is easing after 6 weeks and the physio said it should be gone by 8 weeks but seems to have shifted downwards to the buttocks, at the same time as I'm reducing steroids, so I don't know if it's PMR symptoms resurfacing or whether it's connected with the back and will go away. How can I tell what's what?

[PMRpro Ambassador in reply to tangocharlie]

Er, pass ... Mine is very definitely all intermixed with the PMR but more oral pred doesn't usually improve it - targeted treatment of the inflamed attachments does and so do local steroid injections.

[tangocharlie in reply to PMRpro]

Many thanks, if the back/buttock pain is still there in a week or so I might try increasing steroids back up for a couple of days to see if that helps, and if it does I'll conclude it is PMR rearing up again on the lower dose as the steroids don't help with the back pain. I'll need to wait a bit longer to make sure it's not withdrawal pains that I'm going through. Aye yay yay, it's so complicated, yet doctors say confidently that we just need to reduce steroids as if it's simple

[tangocharlie in reply to PMRpro]

I'm still struggling with sacroilliac problems after 8 weeks so now investigating steroid injections, but I think it's a case of needing a complicated guided one where backs are involved, not a quick thing a GP can do. I've had injections in the past for shoulder problems. I've had sacroiliac problems before, I seem to get it every few years, but never as bad as this. It's hard to even think with this pain going on, which there was a knob to switch it off like the radio when it's irritating you.

It's so hard to get any medical help ATM. I've just spoken to the GP receptionist and explained that I couldn't get through on the phone at 8am which is the only option we're given to get an appointment. She said they had over 600 calls in the queue and advised me my only option is to turn up at the surgery at 8am, even if still in my pyjamas. I explained I'd have to set my alarm for 5am as it takes me hours to get out of bed I'm in so much pain. Upping steroids for a couple of days didn't help, as you correctly thought. I'm wondering if sacroiliitis is connected with PMR, as bursitis in the hip joints is?

[PMRpro Ambassador in reply to tangocharlie]

My rheumy has done one without in the past - but locally into soft tissue. He has also done something called neural therapy

pubmed.ncbi.nlm.nih.gov/105....

topdoctors.co.uk/medical-di...

which is brilliant if a tad sore at the time! The pain woman won't do steroid injections as I'm on anticoagulant therapy but has done something similar to neural therapy and has agreed to do a course, starting tomorrow. (should have been next week but called this morning to shift the appointment to tomorrow so first I have physio and then see her. SHould achieve something ....

And yes - part of myofascial pain syndrome, I think this last lot has been the worst I've had. I read an article about chronic pain in Medscape I think and it postulated a role for the sequalae of stress in compunding it. Would fit ...

[tangocharlie in reply to PMRpro]

Ta, I've got a phone appointment with a physio and will mention it. What's really getting my goat at the moment is that all friends and family just say 'you need to move and walk more', whihc is the opposite of what the physio said. I've started saying 'and when did you qualify as a doctor/physio because that's the opposite of what mine told me to do' LOL

[PMRpro Ambassador in reply to tangocharlie]

They want to try walking when a knife is stabbing you with every step! I find heat great too

[tangocharlie in reply to PMRpro]

Yes! That is how it feels, like being stabbed, I don't know if it's some nerve being trapped or the back going into spasm but I yelp with pain when it happens, it's all intertwined isn't it

[PMRpro Ambassador in reply to tangocharlie]

Yup!!!

[tangocharlie in reply to PMRpro]

We used to have a GP in the practice who did me several injections over the years for hip bursitis and plantar fasciitis in the feet, all worked brilliantly. The shoulder ones were ineffective, but at the time he thought it was frozen shoulders and it was PMR, well actually it was both but the PMR wasn't yet dx. I've been applying Ibuprofen gel to my lower back but I guess it's more deep-seated than that, I don't think its done anything

[tempusfugi in reply to PMRpro]

Ah! didn't realise that. Whatever it was, it was b****y painful and I dread it coming back again, so am tapering V slowly.

[OutdoorsyGal]

Not a doctor, but a drop from 10 to 2mg for 2 weeks gets you into possible adrenal insufficiency territory. The rheumatologist probably knows better than you or your friends on the internet. You may need to tough this one out.

Sorry about your pain.

[nuigini]

I missed taking my early morning tic-tacs and didn't realize it until 9 hours later when everything hurt! I took the missed dose and got back on schedule. Unfortunately, I ended up the symptoms of a flare a few days later, which continued and worsened. I opted for increasing by 5 mg for 10 days and then back to my previous dose plus .5 and have stopped reducing for a few weeks.

I'm unusually sensitive to reductions and flare easily. Lucky me.

We're all different, but with the travel plans in your future I wouldn't hesitate to increase by 5 mg.

Also, I agree whole-heartedly about utilizing airport assistance.