Use of NSAIDs in lieu of steroids

[Daveydog]

Prompted to post for the first time by Bobbykins ( couple of days prior) suggesting onset of PMR was triggered by flu vaccine. I am fairly convinced that mine was triggered a couple of years ago by a Covid vaccine which uniquely (only this brand has ever had an adverse effect) triggered the range of PMR symptoms. Any others had similar “coincidences”?

However my main purpose of this post, is to ask who has tried or been prescribed a NSAID - in my case Diclofenac, in lieu of Steroids?

I had casually used these (partner had them) prior to being diagnosed with PMR. However GP was very dismissive (“don’t work”) despite my experience to the contrary.

I am now at the 2 year stage of reductions of Steroids, with returning symptoms after several months at 1 mg and have persuaded my ( new GP) to prescribe Diclofenac. She is reluctant however and I am aware of the contraindications of this anti- inflammatory with some of my other medications (stroke 10 years ago leading to blood thinners and the usual geriatric bundle of medications for blood pressure , cholesterol etc).

I’d appreciate comments from other NSAID users, if there are any out there!

I’d also appreciate advice from those who have successfully weaned themselves off steroids, as to how they managed to differentiate between the pains and stiffness of the PMR condition and those of daily life. I refer to an active life - of a 75 year old dog owner, walker, (challenging ) gardener and statin taker, the latter having given rise to muscle issues when started 10years ago. Incidentally, I also added a further appendage to the list of stiff and sore and that was my wrists, a year into the PMR journey. These of course are heavily used in several of my typical activities and my GP had them X-rayed, to prove to me that onset of Arthritis was the issue. However, they exhibit exactly the same symptoms (and timings etc)that my other pains exhibit and at my age I would expect some deterioration of wrists and joints. Why a sudden onset however, and during PMR? Is there wisdom that steroids mask the natural onset of Arthritis?

Hence I would appreciate any comments on the incidence of wrists being affected in the PMR range of affected joints/ muscles.

I am at a cross- road of either accepting pain and stiffness as inevitable at my age and fitness level or continuing on medication to alleviate it, with the consequences of that continuum.

I would welcome views and advice.

[PMRpro Ambassador]

While NSAIDs were suggested for "mild" cases of PMR in the past, at the latest with the 2015 Recommendations for management of PMR, their use has been discouraged since they don't work for most patients and their adverse effects are now assessed to be considerable. I have low back pain problems and sacroiliacitis. I can manage the pain relatively well with a low dose of ibuprofen and another NSAID not used in the UK - but the Pain Clinic consultant is horrified at the concept of taking even a small dose of ibuprofen. The effect of NSAIDs on the cardiovascular and renal systems are considerable. However - they do mention their use for non-PMR related pain.

ard.bmj.com/content/annrheu...

Pred does act as a pain reliever in OA - it too is partially at least an inflammatory condition.

I personally think that such a low dose of pred that works is preferable to any of the NSAIDs. Your return of pain could well be PMR - it can flare in disease activity over time, especially in patients who have one of the long-lasting versions of PMR.

[Daveydog in reply to PMRpro]

Many thanks, especially for the link re medications.

So often, we learn that we are between a rock and a hard place and at least with the best available research/ information we are in a position to make informed judgements. e.g. cardiovascular - with recent discovery of a leaky heart valve, I can’t really afford to take any risks with it.

[DorsetLady PMRGCAuk volunteer]

Is there wisdom that steroids mask the natural onset of Arthritis?

Not necessarily-but steroids may dampen down the inflammation involved in some forms of arthritis and certainly do mask the pain, which has the effect of you not realising that your arthritis may be deteriorating.

It’s unlikely that arthritis has suddenly appeared -it’s probably been there a long time -but has just begun to cause pain.

[Daveydog in reply to DorsetLady]

Thanks for your advice. Time will tell if the wrist issue resolves with the other PMR related pains and if not, then presumably it’s OA - and related meds for the rest of my life. I’ll keep my fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Daveydog]

Wrists can also be a sign of carpel tunnel syndrome [CTS] and is certainly associated with PMR - is your GP ,sire it is purely arthritis - could be a combination of both…and you may find that wrist supports help.

CTS is often discussed on here, and if you type into search, sure you will get plenty of posts to view.

[Charlie1boy]

Hi,

I cannot begin to answer you like PMRpro or DorsetLady, but can relate my own experience.

I took ibuprofen initially for the pain before diagnosis, but not every day because of the known side effects. It did virtually nothing for the pain, which wasn’t resolved till I took prednisolone.

I developed wrist pains after some two years of pmr, and, on the advice of PMRpro, took an extra three mg of pred, which sorted the issue in 24 hours, and it hasn’t returned . For a number of years I have had arthritis in an ankle that had been broken and dislocated many years previously. The pred initially cleared this pain completely, but I sure noticed it again as I tapered off the pred. I still get that pain especially in cold damp weather!

I have now been off pred for just over a year.

[WaltzG]

Hello ..With respect to onset of PMR after covid jab yes happened to me and others . Wish you well.

[Daveydog in reply to WaltzG]

thanks for your good wishes and confirmation of causation - which seems to be a very human need I.e. to give a setting or at least an explanation of the onset of something invasive and limiting. Not that the medical profession seem to understand the need for an answer, as there is little one can do to turn back the clock.

Thanks again

[PMRpro Ambassador in reply to Daveydog]

Just consider that if the jab triggered it - and ANY vaccine can do it as well as a lot of other things, it is not one single factor, it is a build up and finally one thing is too much -just think what Covid might have done in its place.

[Daveydog in reply to PMRpro]

Completely agree and have continued to take vaccination. Identifying causation - yes in its many forms and interactions - is however surely a first step to understanding and fully appreciating the balance of various risks and benefits involved in any intervention.

[YogaJM]

This may not be relevant to you, but my right wrist and forearm were very much affected in my presentation, together with difficulty hunkering down. I had tethering of the skin around the wrist, with lumpiness and grooving in the arms. My diagnosis was changed from PMR to Eosinophilic Fasciitis by an excellent Rheumatologist who is supporting me through slow tapering of steroids and resolution of symptoms. Down to 6 mgs now after 13 months. If your symptoms don’t fit classical PMR, then worth reviewing the diagnosis.

[Daveydog in reply to YogaJM]

Fascinating thought and thanks for opening up The question. must push my GP on this one, as running out of new ideas for a review of my ongoing situation

Thanks again

[Missus835]

Hi Daveydog. Regarding PMR and the Covid jabs, absolutely and no coincidence, as my Rheumy would have me believe "maybe you were just meant to have PMR". Symptoms began after first jab in May 2021 and escalated 10 days after 2nd jab in August 2021. My wrists were bad after this and I had to use wrist supports. I believe it was CTS, but former GP diagnosed old age. Prior, Extra Strength Tylenol plus Ibuprofen lessened the pain. Not so after the 2nd jab. Diagnosed with PMR Jan. 2022 and prescribed Pred. Pain gone witin 48 hrs. I now have 9 vetebral fractures due to osteoporosis, possibly caused by the Pred. Not genetic in nature. This causes a whole other type of pain issue throughout my back. Mostly muscular. Wish I could continue with the Ibuprofen, but with already iffy stomach, hypertension, etc. sadly, I cannot. Currently taking Tylenol with codeine for the back, which brings a whole set of issues into the mix. All the best to you.

[Daveydog in reply to Missus835]

Sorry to hear of your ongoing issues which are indeed a warNing to relative newcomers like myself, that almost any solution or attempts at pain alleviation, have their downsides. However most grateful for your confirmation of the Covid link, which to date I have struggled to find evidence of ( or support for).

Many thanks and best wishes

[PMRCanada]

I was prescribed enteric coated Naproxen 500mg, twice daily, for 2 months prior to my PMR diagnosis while they were trying to figure out what I was suffering from. It is an NSAID that can cause gastro issues, hence why I had the coated variety. It didn’t provide much relief….barely took the edge off my painful symptoms. When I took my first dose of pred ((20mg), I had significant relief in 6 hours! As soon as I was diagnosed with PMR I was advised to stop the Naproxen immediately and told to use ibuprofen sparingly.

Of note, with my current taper down to 5.5mg of pred I’m noting the return of pain in my knees (I had OA prior to PMR), and mildly stiff hands on the morning. So I know the pred at higher doses masks OA symptoms.

[MiniSpec]

Months before I was put on Prednisolone the 'specialist' tried me on diclofenac tablets. They worked well for me, but after taking them for a couple of months, I found the stomach pain to be too much each morning. That was when he reluctantly put me on Pred, but told me I was likely to be on them for years.

The Pred was a whole new ball game for me. Instant pain and stiffness relief from the first day, and leaping around like a teenager. That was on 15mg per day.

However, the downside for me was the tinnitus that arrived the day after my first Pred tablet. I've still got it now, 13.5 years later and down to 3mg per day. No doubt I will have it till I manage to get off Pred altogether (if that ever happens!).

Meanwhile, I think it's a small price to pay for the ability to live a more or less normal life in most other respects.

[Daveydog in reply to MiniSpec]

Appreciate your comments as I am also a tinnitus sufferer - of 25 years but can mainly ignore/ block it out.

Ironically, although I have a hiatus hernia - for which I take Lanzoprazole, I have no stomach issues with Diclofenac

On the subject of tinnitus, I have been trying to “accommodate” my ongoing pains and stiffness of PMR in the same way I do with tinnitus and am sometimes successful - not always!

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