Kinds of pain

[ponai]

I'm trying to decide which pain is which, and therefore how to improve things. I've been on Pred since 2016, never free of stiffness, but spent few years coping on 3mg. A def flare after a covid jab- I knew because I had to crawl upstairs on hands and knees- sent me up to 6 where I was stable but still stiff. I planned to taper in November- just 1/2mg slowly- but after a few weeks had a dose of severe one-sided buttock pain and sciatica which PMR Pro suggested could be Myofacial(?) syndrome- it fitted exactly. It stabilized again by February, and I tried tapering again to 5 (in 2 stages) which was ok, but have just had another session of severe one sided arm/hip pain which started 2 days after some energetic travelling/clambering which fits neatly with DOMS and is now subsiding.

My question is where does Pred sit in all this? I assume the muscle pains are the result of pmr weakness, but not actually pmr, so maybe the answer is rest, paracetamol and voltarol. I also guess I'm someone for whom pred only works partially. I have a demanding trip coming up in August, and had thought of using the warm (ha!) months to taper again, just to 4 1/2, but that depends on whether the Pred has any effect on the other pains. This is feeling too complicated for me so I hope someone else has experience of this and can help with what to do next.

Thanks...

[PMRpro Ambassador]

"maybe the answer is rest, paracetamol and voltarol" - in the short term, I think you are right. The voltarol is topical I assume?

And NO - never taper on holiday unless it is about 4 months long! Especially as you class it as "demanding"! Holidays are stressful anyway - even if you don't think they are!

I'm concerned about the fact you seem to have spent a lot of time not optimally managed - I suspect a permanent state of not on quite enough pred. "coping" is not an adequate assessment of QOL, that is critical at our stage of life and even though my PMR appeared in my early 50s, I was not diagnosed for 5 year - the pred was a miracle but very difficult to taper and I refused to compromise. I lost a lot of my 50s to PMR and pain, I'm very unwilling to lose more years.

It is possible some really good sports massage/mobilisation/stretching/physio might help with the stiffness. When my lower back is playing up I really struggle to walk freely but on an almost pain-free day I can feelsuch a difference.

[DorsetLady PMRGCAuk volunteer]

Definitely no tapering whilst on holiday [out of normal routine, so not a good idea] - and not just before either… and preferably give a couple of weeks after returning.

Agree with PMRpro, QOL is paramount…and ‘coping’ doesn’t fall into that..you need what Pred you need…

[SnazzyD]

It can become a right mess. All I can say is that DOMS dogged me for 2 years after stopping Pred in 2020 and that was after just GCA, but who knows what inflammation lurks unlabelled? Always having been active and outdoorsy any gleeful clambering would dog me for a few weeks as it invariably set up a niggle that had a knock-on effect elsewhere. Trips to the osteopath ensued to sort out whatever pains cropped up from wonky bits and pieces, until next time. My upper body strength took much longer than my legs to recover though I suspect that is because they got more incidental gentle workouts. Repetitive, explosive/strong movements or sustained activity was always a risk and I still have to be a bit wary of those.

Another thing that came to light as my Achilles tendons kept giving up on low doses of Pred was how weak my pelvic muscles were and the small stabilising muscles from low back to feet. A physio and a podiatrist said the same thing. With targeted exercises, I became less susceptible to tweaking pelvic and low back muscles and of course my knees and Achilles were delighted.

The bottom line is, it a take a blimmin long time for the body to recuperate and usually later than when we decide normal service should be resumed.

[ponai]

I was working on the assumption that if the pred is too low, things would get gradually worse, but then there are so many variables. I also hoped lowering it a bit would help with the stamina problem- as long as it didn't start off a flare! I can walk for about half an hour before I have to sit and have a coffee- that's what I mean by coping. I know where all the local benches are! Thanks- lots to think about.

[SnazzyD in reply to ponai]

Another thing to muddy the water at low doses - If your adrenal glands are not yet working properly yet there won’t be enough cortisol in your system to deal with extra physical demands. This will make you feel like you are running on an empty tank. This process can take many months to come back on line. Eventually, the constant deficit will trigger the adrenal axis to work more reliably. In the intervening time it can be really disconcerting how tired one feels and how little activity can make one feel so drained. Mild fluey aches and foggy head can be a feature.

[ponai]

And the only way to find out is to plod on for a bit and see if things get better or worse?

[PMRpro Ambassador in reply to ponai]

Pretty much, yes.

[Louisa1840]

Hi Ponai, I relate so much to your post. I have been on pred since 2017 and am now on four and a half mgs but I am so stiff and with so many general aches and pains. It is so hard to know what to attribute to PMR and what to simple old age. After all our bodies would have aged a lot in the 7/8 years we have had PMR. I do a program of stretches every morning which I think helps a lot but when I have been sitting for any length of time, I am like Lady Penelope, from Thunderbirds as I lurch back into (semi) action.....

All the very best!

[PMRpro Ambassador in reply to Louisa1840]

Are you better at 5mg?

[ponai in reply to PMRpro]

This is where the many variables make it difficult to decide- I don't think my slow reduction from 6 to 5 made much difference- just discomfort the first few days- and the other pains are improving slightly but not reliably. Sunshine, warmth and inactivity help, but can't be summoned up. If it isn't a pred issue, I'd like to encourage my adrenals before August when there are going to be demands, but who knows? Sympathy to Louisa who seems to be struggling with the same issues.

[PMRpro Ambassador in reply to ponai]

I was asking Louisa - but the question that always needs to be asked is "did you feel better at a higher dose - if so, how much higher?" And then, did the feeling of being unwell improve over a period of a few weeks - or worsen?

[Louisa1840 in reply to PMRpro]

Not really. The stiffness started in my fifties well before PMR made its entrance. I have just made a doctor's appointment as I have an awful rash in a line over my back. I think it may be shingles. I didn't have the shingles vaccine because this site advised not to when on steroids for PMR. Oh dear...... I will report back!!

[PMRpro Ambassador in reply to Louisa1840]

Ah - that was the old Zostavax vaccine. You were almost as likely to get shingles with that! The new Shingrix vaccine, available since last September in the UK is OK in terms of that. Several have had it,

[Louisa1840 in reply to PMRpro]

Yes, my doctor mentioned Shingrix. I've done a separate post about the Shingles which has proved to be the case.

[arvine]

I too wonder the same, I was diagnosed woth pmr oct 2016, still on pred now, bit now through MRI s scans etc diagnosed witj osteoarthritis back, hip, and mow most joints hurt most of day, hands stsrted couple mos ago, rheumy says pred is painkiller so would relieve many pain issues anyway and does not believe increase of 5 mgs as suggested here at times, so may be possible pain I have and am having was masked by pred and rather than pmr was osteo or inflammatory arthritis, hard to diagnose when markers dont always shoe inflammation, and seems hard to know difference between pmr and all the forms of arthritis and the fact that wear and tear ,natural aging causing many of our issues

[PMRpro Ambassador in reply to arvine]

The pains of natural aging tend to increase VERY slowly. The pains of a flare when you overshoot the dose increase relatively quickly. The 5mg increase is temporary - so how they can "not believe" in it beats me. You don't have to "believe in" something you can experience yourself and I don't know where they get this idea that pred is a painkiller - I know what of my pain it is likely to sort out and what it won't.

[arvine in reply to PMRpro]

Thank you, well Im trying to remember but do s seem my hands got bad around same time as started my dead slow taper from 5 to 4 mgs, and maybe elbow joints , but other issues back, hip etc seemed the same as before started taper, and now the MRI had done couple mos ago, showed lots of issues with back, but havent noticed any worsening , just same issues have haf for long time, ot did show large cyst on kidney? So now my GP sending me for ultrasound, that s tomorrow, just seems one thing afrer another, the ladt year or so hasnt been very good