Extreme Stiffness

[Louisa1840]

Hello Everyone, I have experienced stiffness since my 50's especially after sitting for any length of time. Enter PMR at age 67 ( I have had it for four and a half years) and the stiffness was much worse of course. I did see a rheumatologist a few times who thought I had an underlying inflammatory arthritis with PMR on top. He said this was very normal for PMR patients to have an underlying condition. I was confused to later find that PMR comes under the heading of inflammatory arthritis (what's in a name?)

I was prescribed another anti-inflammatory (trade mark Mobic here in Oz). As this was on prescription only I changed to an over the counter drug , diclofenac, when the Mobic script ran out. However, I have recently been experiencing horrible acidity in my stomach so I have stopped this (around 3 days ago)

I am so stiff today I can hardly walk but I don't know if this is a result of dropping to 5 mgs or stopping the diclofenac? I have tapered VERY slowly by half a mg using DSNS. I remember some years ago upping my steroids to deal with stiffness and it made no difference at all.

So I am a very confused koala bear! There appear to be two different issues here and why doesn't the pred deal with the stiffness? Surely both drugs are anti-inflammatory?

Any advice or observations gratefully received from Down Under!

[DorsetLady PMRGCAuk volunteer]

I think you may have two different things going on ….and really you shouldn’t be on Mobic (or diclofenac) at the same time as Pred…they are both NSAIDs, so no wonder you have stomach issues.

If an increase in Pred didn’t help previously, then that maybe that confirms another illness as well….

You are right in that Pred and NSAIDs are both antiflammatory drugs, but they work differently, and whilst Pred works on PMR it doesn't work for something else like Rheumatoid Arthritis, and visa versa. I can’t give you the medical/physiological reasons why, but sure PMRpro will be able to explain.

But do think you need further investigations.

[Louisa1840 in reply to DorsetLady]

Thanks so much DL. That's exactly what I thought. It's possible here to make an appt with a pharmacist to discuss medications. I'm going to do this for a start then either back to my lovely GP or back to a rheumy.

[PMRpro Ambassador]

"I was confused to later find that PMR comes under the heading of inflammatory arthritis (what's in a name?)"

Depends who's classifying it I suspect. It is associated with a proven vasculitis (GCA and LVV) - and it DOESN'T affect joints per se. The effect is on the surrounding tissues and that makes joints feel stiff.

The pred WILL deal with the stiffness of PMR - but only if you are on a high enough dose. That applies to everything to do with PMR, it is a management strategy and only works when implemented fully. Pred will also work for inflammatory arthritis to relieve the symptoms - what it doesn't do is prevent progression of the disease process in inflammatory arthritis and joint damage will still develop. Pred is used for flares until the DMARDs (disease modifying anti-rheumatic drugs) that are the first line approach start to work - which can take some months.

How are you reducing the dose? Below 10mg it MUST be in small steps and it must be slowly enough - you aren't heading relentlessly to zero, you are looking for the lowest effective dose and that may be on a very different scale. However slowly you reduce, going below the dose you need to manage the daily drip of inflammation will inevitably result in it building up to a level that causes symptoms again. The lower you go - the quicker that will happen.

Some people don't manage to get rid of all the stiffness or symptoms - and that is worse if you also have myofascial pain syndrome alongside your PMR as I do. Here in mainland Europe they are very cognisant of that - and pre-Covid I was able to have good non-pharmaceutical management for it. Bit of a hiatus at present - meaning I need a higher oral dose of pred but at least I get it without question.

[Trulyscrumpious in reply to PMRpro]

I’ve had PMR for over 6 years. I’ve been on a maintenance dose of 5mg for about 3 years. Because l was still very stiff and get very fatigued l didn’t reduce further. But l do have osteoarthritis in most of my joints. I’ve had replacements in one hip one knee and one shoulder and am waiting to have my second knee done. The hip op wasn’t a success and has left me with a limp and backache when l stand or walk for more than about 10 minutes. So l’m wondering if should try reducing again. I forgot to take my pred yesterday and had no ill effects- the other time l did that l knew within hours. It’s very confusing knowing whether my stiffness and pain ( eg on getting up after sitting for too long) is the OA or PMR. I still get the fatigue though. But l am 85 so perhaps that’s why. I thought l would try reducing to 4.5 pred and go down in .5 steps. How long between each reduction? I have found your advice to all of us so helpful.

[PMRpro Ambassador in reply to Trulyscrumpious]

It is worth trying - very carefully! You will know if things worsen - if they don't, then you get to a slightly lower dose.

I had a similar problem when standing or walking - and shown to be all muscular in origin. The right physio and my lovely pain clinic lady kept it at a level that saves on the daily pred but Covid has put the mockers on that.

[Trulyscrumpious in reply to PMRpro]

Thanks so much. I’ll let you know how l get on.

[MrsNails]

Hi My Friend Down Under 👋🏻 Dicolfenac - was always the Anti-Inflammatory l took pre PMR Days but it was stopped by my GP as it’s not good to take it long term.

Generally Drs worry about us taking an Anti -Inflammatory Med while on Pred - however, they can prescribe it but they are very careful about what they do prescribe.

Since my knees were damaged by the Chemo l have Meloxicam (a once a day tablet taken after my evening meal) You need to stick with the prescribed Tablet & follow the instructions - do you take a PPI - stomach protector?

Kind Regards

Angela x

[Louisa1840 in reply to MrsNails]

Thanjs Angela. I dont take a PPI but obviously need to....I have been on Meloxicam too and it was very helpful. It's back to the docs for me!

[MrsNails in reply to Louisa1840]

Yes - definitely needs a Medics Supervision. Hope you get on OK x

[Louisa1840]

Thank you Dadcue. I was pretty sure you would reply having read some of your previous posts as we seem to have a similar history. I will see what the experts say armed with this knowledge and some of the other replies my post has received.

[Linda20]

Hi Louisa, sorry to hear you are in the wars. I have psoriatic arthritis, which is an inflammatory arthritis, as well as PMR (and osteoarthritis for good measure). I experience stiffness to varying degrees, sometimes severe. I've been on weekly Actemra injections for 7 months and both the stiffness and PMR symptoms have reduced and I'm not getting the flare-ups that I was experiencing, although if I over extend myself I do crash for a while. I've reduced pred to 3.5 mg, and 2 weeks ago my rheumy advised I could stop the methotrexate injections. So far going ok.I don't have the knowledge of some of the wonderful ambassadors on here, but seeing as our circumstances seem to be similar thought I'd mention my experience with Actemra.

[Louisa1840 in reply to Linda20]

Hi Linda, thanks for your reply. It sounds as though the Actemra has suited you well. I do hope you continue to improve.

[Louisa1840]

It's not very scientific but I have a gut feeling that the PMR is on its way out. Obviously this could be wishful thinking but I am ever the optimist! It's so hard to tell what's PMR and what's inflammatory arthritis but just feel the stiffness is the latter. I have an appointment on Thursday with a pharmacist (easier to get into than a doctor these days) and hope he can point me in the right direction. I discharged myself from the rheumy's care laat year preferring to take charge myself together with my very good GP and this forum. As you say it becomes a question of how to treat both conditions. What would I like? To be fit and well again!!!