As per my bio. I was diagnosed with PMR in Sept 2023 and started on 15mg of Pred. Have been tapering at 4 week intervals from 15 to 12.5, then to 10 then 9 and then 8. So far so good. However, about 5 weeks ago I strained my back quite badly. Two telephone consultations with GP. At first, he prescribed 250mg Naproxen twice a day and ibuprofen gel 3 times a day. Have been taking care to rest, but trying to stay mobile as well with walks around the garden. Then after a couple of weeks, I jarred my arm coming through a doorway which resulted in some acutely painful spasms of pain in the muscles across my back. Didn’t know how to move without causing another spasm. Found I had some 500mg of Naproxen and started taking them. Told the GP on the second consultation and he sent me some more and some more ibuprofen gel. Things were progressing steadily and carefully with longer slow walks and rests. On the strength of this progress, I stayed an extra week on 8mg and then 11 days ago tried 7mg. Last Friday, I had my second shingles jab which had had to be postponed as I couldn’t get into the car, let alone travel in it. Felt a bit off on Saturday which I put down to the jab, but had been feeling a bit ached in the neck. Wasn’t sure if that was the way I was laying in bed. The only way I can sleep at the minute, is on my side with a pillow along the length of my back to support it. Did a slight knees bend on Saturday to pick a cloth up from a towel rail. Immediately, got a muscle spasm, but not as severe as earlier ones. Rested for the rest of the day. Felt a slight improvement on Sunday. Yesterday morning, upset things again. I think it was holding a cup up to finish a cup of water whilst standing and then taking a step at the same time. ( Sounds stupid, I know). The upshot was that I got several more spasms on right side of my back. Admittedly, more like pulls than the “ take your breath away” ones that I had earlier, but back enough to make me scared of how to move next. I had changed down to the 250gm Naproxen before Saturday, but have now reverted to the 500mg ones. Felt a bit better this morning. I don’t know if it has all built up to a perfect storm with the taper and the jab and the stress of my back pain, but I was feeling a bit nauseous, my neck ache is more evident, arms ache, plus this morning I was reading a book and kept falling asleep and I feel generally unwell. This morning I reverted back to 8 mg of Pred to see if it makes a difference. I’m booked in for a face2face appt with the GP next Monday as he asked me to let him know how I was getting on. Rang surgery 2 weeks ago to book call back as he asked, but he is on holiday for 2 weeks. Was offered a call back from a different GP or a F2f. I took the F2f as things were going ok then and F2f appts are like hen’s teeth. I hoping that I will have improved sufficiently by next Monday to travel in the car. I managed it last Friday with cushion support, but that was before this latest relapse. Its difficult to sort out what is causing what pain, but I think possibly I’ve overshot the mark with the tapering. I’ve been lucky so far and maybe I got a bit cavalier with it. I’m still obviously a learner. Advice from experts would be most welcome and sorry for posting War and Peace. I was trying to explain everything.
Tapering - have I overshot?: As per my bio. I was... - PMRGCAuk
Tapering - have I overshot?
Hi, Indigo2417, I am so sorry to hear of all your troubles, sounds pretty bad.
A few observations; you may or may not be reducing the steroids a little bit fast, but more importantly, it's not a good idea to try a taper when you have an injury to deal with; partly because it may affect your ability to taper and partly because it becomes difficult to understand what is going on and whether your steroid dose is now too low.
It would be worth investigating what is going on with your back as taking Naproxen for a prolonged period together with steroids is not usually encouraged. Steroids could affect your muscles and it may be worth understanding whether this is the case.
I hope you get to the bottom of it and can continue the taper when the seas are calm.
Thanks for the reply. As I said to SnazzyD, I think I got over optimistic, being a novice at this. Have gone back to 8mg this morning and will see how it goes. Hoping to get more help when I see GP on 26th. Hopefully, I will have improved sufficiently to get in the car and travel. Fingers crossed. Showing my age, but I remember having a GP visit when you got sick as a child. Seems a long time ago.
I agree. The info onlne says do not take Pred with Naproxen. I was told to take it for a knee issue. I had water. retention and swelling and had to go off Naproxen and got better after the.
Well, I think it really not good that you are 5 weeks down the line after a traumatic event where the pain is not being controlled. Non steroidal anti inflammatory meds are not advised to be given long term with Pred. Someone needs to look at your spine and surrounding structures and stop fobbing you off. I’d say you need to be insistent with the gatekeepers of the GP portal. You could have a mix of PMR flare, vaccine side effects and whatever you’ve done to your back. This isn’t for over the phone. Have you ever had a DEXA scan in the last couple of years?
Had a DEXA scan in 2021 which discovered osteoporosis in spine and osteopenia in hips. Hurt back in 2019 and it appears that then I had compression fractures in 4 thoracic vertebrae, plus some sort of damage to L1, but without refer to my X-ray report, which was done in 2021, I can’t remember. I will have to look it up in my notes. I forgot to mention that I’ve also been on 15 mg Lansoprazole since August, before PMR diagnosis. To be fair, when I rang to book update review, I had been progressing slowly and they offered me the choice of a telephone consultation with another GP or the F2f with the original GP on 26th. At the time , I preferred to wait for the F2f as I mentioned, because you don’t usually get offered one. It’s only over the weekend where things have gone awry. I think I got over optimistic. Am resting now, but still trying to keep walking about to stop me seizing up completely. I just have to think about what I’m doing before I do it and my top speed is slow.
A post script to my reply below. I have just checked my X-ray report which was done just after the DEXA scan. It said compression fractures to D8, D9, D10 and D12. Plus, mild superior end plate depression L1 likely to be endplate fracture. No significant subluxation. No other focal bony abnormality. After this, I saw NHS physio who gave me exercises, which I did, but then she gave me some further ones which aggravated hip bursitis. Had to leave all exercises off when I got shingles badly. Saw her again Jan 2023 and she gave me different exercises and I tried to persevere with them. Also tried walking more and was doing fairly well with that when PMR struck. Since then, I’ve managed some walking, but nothing much else. Also, got Covid two weeks after starting Pred, which also pegged me back a bit.
D???? T surely if there are 12 ,,,
That’s what it said on the X-ray report that I asked for a copy of.
How strange ...
Some Radiologists (old school)refer to the thoracic spine as the dorsal spine, hence the D.
Ah - thanks. Never ever come across that before! In any country ...
Dorsal makes me feel like a fish.🙂 Wish I was as pliable as a fish though.
🐟🐠🐡… 🤣😂
I was somewhat relieved to read your reply to Snazzy and the information you are on lansoprazole!!! It really ISN'T recommended to have patients on pred AND NSAIDs at the same time for more than a few days but it seems UK GPs think Naproxen is safe - I can tell you that here it never gets a mention!!
If you have a history of spinal osteoporosis AND compression fractures I really feel you need an x-ray now, especially in view of the degree of pain you have. Further fractures need to be ruled out. I don't know what they do in the UK but with a spinal fracture my husband was kept in hospital until they could fit a supporting corset. With the amount of pain you are experiencing, even a visit to the ED would be on my list of possibilities and I'm pretty sure my GP would send me there. My rheumy definitely would. And if a query fracture had been in the air, I would have been told to hang around in radiology until someone had looked and said it was OK. I had no pain at all but there were signs of a compression fracture and it was taken seriously immediately.
My fractures were in 2019. I did got to ED a few days after the event. At the time was was not sleeping very well and having to get up and go to the loo in the night every couple of hours. That was a major performance getting out of bed and in again. Hubby transported me to ED when I had a major spasm and was too scared to move for about 30 mins. When I told them about the frequent trips to the loo, they seemed to be more concerned about my kidneys and a urine sample show a trace of blood. They’d given me 2 x 30/500 cocodamol in triage and by the time I saw the doctor, I wasn’t all there to explain properly what happened. They told me to follow up with my GP in a couple of days. He remarked that I’d got a slight curve on my back, but being ignorant, I didn’t realise the significance. No X-ray was done then. When I was still having on/ off problems with my back in 2021, hubby badgered me to go to the GP again. I didn’t want to go during Covid in 2020, but he kept nagging me. That was when I was referred to the physio who straight away said osteoporosis. She forgot to refer me for X-ray, so that wasn’t done until after the private DEXA scan, when the consultant advised it as well as Alendronic Acid and Calcichew D3 Forte.
I am so sorry you are in so much pain. As the others have said, an NSAID such as Naproxen is not a good idea as using pred together with naproxen may increase the risk of side effects in the gastrointestinal tract such as inflammation, bleeding, ulceration, and rarely, perforation. Perhaps you should mention to your GP that pred and Naproxen are contra indicative. My GP always goes for Naproxen until I remind her!!
Yes, I realise that the Naproxen is not good. That is why when things started to improve, I dropped down from 500mg to 250mg. The GP was aware that I am on Pred because I told him. Said I was on 8mg and he asked if I was going to drop down to 7mg. At the time I was feeling more cautious, so I said I’d go to 7.5mg and he didn’t argue. Then, when to time came to drop down I decided to go another week on 8mg before over optimism stepped in and I decided to try 7mg. Hindsight is a wonderful thing and I think in view of everything, it was a big mistake. But, as I said, the GP did know then that I was on Pred. By the way, before I spoke to the GP the first time I’d tried taking 2 x 8/500 cocodamol at night to help me get through it, but I don’t get on very well with them as they make me drowsy during the day. I did tell the GP that as well. Another thing I forgot to mention is that I’m waking up two or three times for the loo and because laying on my side in one position all night makes the hip that I’m laying on ache, which wakes me up. So that would explain some of my tiredness.
My GP also knows as they prescribe it, but they still make mistakes. I am probably dreadful to have as a patient as I have worked with the pharmaceutical industry for thirty five years! I am often horrified how little some doctors know about drugs.
In 2019, I was still under the illusion that the GP knew best, but experiences since then have disabused me of that notion. I realise that some are better than others. Unfortunately, the two locums that saw originally when PMR struck are not at my practice any more. The best one was a young woman who really seem to be up with things and I’m really sorry that I couldn’t see her again.
As my GP says when I disagree with him ‘I am just a mere GP’!
So sorry to hear about your woes. The one thing I have learned is to taper with caution, and if something happens, where you need to go up don't be hard on yourself. I have been up and down for five years and now going to go down to 4mg but will be v cautious.
Thank you. As I said, I’m a novice at this and things had gone quite well up to now. I will definitely be more careful from now on. On the plus side, I’m a bit more mobile this morning, but still having to be careful about what I’m doing. No sudden movements. At least I’ve moved from glacial pace to snails pace. It is tipping with rain at the moment, but supposed to be clearing up towards midday. I shall try and have a walk round the garden then. Have also dropped back down from 500mg of Naproxen to 250mg. As long as things progress, I want to leave them off as soon as I can as I know they’re not good for longer periods. I must aim for slow and steady progress.
I want to leave them off as soon as I can as I know they’re not good for longer periods.
Do you mean naproxen or Pred?
If naproxen, then I’d agree.
If Pred, then you need what you need and for as long as you need it -and don’t believe all the negativity there is surrounding them..not helped by many in the medical field.
Many of us have been on Pred at much higher doses and/or for long periods -and surprise, surprise we are still mobile, healthy and have all our marbles.
Without Pred, many would be in a much worse place …
The Naproxen.
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