Two weeks ago I was told reduce your dosage from 4 to3 which I have done. Blood test last week and was told normal . Don't know what normal is as the past few days had pain in shoulders hips and lower back. I also have osteoarthritis in most joints so wondering if it's that that is causing all the pain. Just diagnosed in my feet too. Do you knowledgeable people think it's just arthritis or the drop in steroids.
Steroid reduction: Two weeks ago I was told reduce... - PMRGCAuk
Steroid reduction
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kathyrob
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So soon after a return of pain it is unlikely that a blood test would show much but just saying "normal" is meaningless anyway. You need to know what it is compared to previous levels when you had no pain or other problems. Is it higher than it was last time? Normal range is the range of levels found in 95% of a large population of nominally healthy persons, not the range that is OK in an individual. If you have a return of pain and possible PMR symptoms then the blood markers should be checked a few times to see if there is a rising trend. It is unlikely that osteoarthritis will contribute much to the levels,
However - if you reduced your dose by 25% from one day to the next 2 weeks ago and you have pain now, I doubt it is due to the change in dose, that appears immediately and then improves over a week or two. The fact it is appearing now over the past few days suggests to me this is the PMR inflammation building up again because the dose is now too low to manage it.
DorsetLadyPMRGCAuk volunteer
Could be a bit of both, but 2 weeks after a reduction is usual time for body to realise current dose is too low… Maybe back to 4mg pronto and hope it resolves itself… if not you may need to consider taking action for flare, see link -
healthunlocked.com/pmrgcauk...
..and you’ve got things back under control - only 0.5mg a time - and one of the slow tapers we are always talking about on here -
healthunlocked.com/pmrgcauk...
Thank you so much for reply, its Drs wanting to get me off the steroids been on them 6years. Pain had not completely gone but was better than now. Have phone app with health care assistant on 15 May then I will state my case and ask for figures. I do have other health problems so perhaps trying to find cause for breathlessness.
I'm sure they DO want you off pred - unfortunately it isn't they who have the say, the underlying autoimmune cause of the PMR symptoms does. As long as it is active, you will need some pred to manage the inflammation.
But the way to get off pred isn't by rushing at it 1mg at a time at this stage. Not only must the PMR be kept under control but your adrenal function also must be allowed to recover and produce cortisol to replace the pred that is doing its job at the moment. And that is best done by tapering the pred very slowly and allowing the body time to adjust.
And in fact, one effect of low cortisol levels in Addisons disease is shortness of breath - so that could also be partly due to the low corticosteroid levels you are currently having to cope with.
How Drs can advise dropping by 1mg when under 5 is beyond me. That's asking for full blown return of symptoms.
Just to add, I'm not able to drop by even 0.5mg below 3.5mg. I have to reduce by 0.25mg here on in and use DLs slow taper too. Yes, the osteoarthritis pains worsen too but that's joints not muscles and is helped by Paracetamol and Flexiseq cream.
I have end stage OA (stage 4) in both knees and PMR since April 2023. Earlier in 2024 I tried to reduce from 4 to 3 using my usual method of alternate days for two weeks then the changed dose but experienced a lot of pain particularly in my knees. Because of what is often followed here I asked my doctor if I could reduce to 3.5 instead and after much ado she agreed. I am now alternating 4/3.5 and this is going successfully - so far. The doctor also suggested an 8 weekly reduction before a new dose, as opposed to 4 weekly, and in future I will reduce by .5mg It is well known that OA pain is helped by prednisolone but as my doctor says - ‘we don’t treat OA with steroids’. On 15 mg it was like heaven for my knees.
"we don’t treat OA with steroids"
No - would rather leave a patient in constant pain. 15mg is a bit much I agree - but if a low dose of pred makes a big difference, I think there is a place for it.
Totally agree but Drs have this urge to get you off them. At my age of 83 don't know why they don't leave it alone. It's not bothering them anyway. Less calls to the Drs too.
Even at 5mg I felt a benefit for my knees but because of the side effects of long term steroid use I am still endeavouring to lower my dosage and concentrating on only the PMR symptoms though it has been said that PMR can also bring on knee pain.
It can, knees and feet and hands, I've been on pred for over 15 years, a lot of it at well above 10mg. I have no identifiable longterm effects of pred even with that accumulated dose but I have been able to function pretty well which was essential. Now I have the "benefit" that adrenal function isn't too enthusiastic and my rheumy doesn't expect me to get below 5mg although at present under 7mg doesn;t seem likely. But it isn't all bad.
you are fortunate to have no side effects. I developed cataracts very quickly in both eyes from the pred. Also weight gain though not too much as I watch my diet. I guess it’s a fine balance and what works for each individual.
Once you've dealt with the cataracts, that was a one-off, can't happen again. I now have the earliest of cataracts in one eye but I probably would at my age anyway. I'm not blaming pred.
I was told my cataracts were down to the pred. Previously I had been given the backhanded compliment that I had ‘quite remarkable eyesight for a woman my age’. So I was very disappointed. Still the pred controls the symptoms of PMR so I am very grateful for that.
I feel exactly the same I don't think Drs realise the pain as they are not the ones suffering. Like you on15 it was a miracle. On 4 it was bearable but now on 3 pain all over. Probably go back to 4 today get a bit of relief. Thanks for your reply makes me feel I'm not alone.
If you have "pain all over" - are you sure it is OA? It could be the PMR or it may be adrenal insufficiency. It isn't a fight I'm likely to meet because even with Actemra there is still some of the PMR in place at under 7mg.
I meant most of joints now including feet with arthritis and swelling not much help with any for pain relief lots of drugs can't take. Asked for app yesterday but get fobbed off with how busy they are, last week went to surgery and there was 3 people there . How busy is that used to be packed surgery. Got a call booked 15 May with care assistant.
On 15 mg it was like heaven for my knees.
Yes it would have been, but at medium and higher doses it masks a lot of different sorts of pain.. ask anyone on here.
A small study [linked] has shown that Pred helped with the inflammation in hand OA, but it not really been proven for weight-bearing joints like knees - but as the ubiquitous saying goes - every little helps!
creakyjoints.org/about-arth...
There other studies that show a daily dose of between 5-10mg may help - but not sure many doctors would be happy about prescribing that on a long term basis..as you have discovered.
I can chime in on the hand OA. When PMR hit I also had OA in my left hand. Started at 20 mg and all symptoms of PMR disappeared and the bonus was my hand felt great. It has for a few months but by last reduction to 7.5 has maintained the PMR beast but my hand OA is back in spades. Maybe a coincidence but I don’t think so
Peripheral arthritis is said to be part of PMR - but they rarely say what SORT of arthritis, inflammatory or OA.
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