Hi
I'm new to this as I've said in my previous post so learning all the time. I have been told that after two weeks on 15mg prednisone I should come down to 12.5 mg and so on . Curious what would taking steroids in two weeks only have done for my polymyalgia I thought they were just pain killers ?? So surely it will still be there.
grateful for any 💡 ideas
Mine was 3 weeks. 15mg was just a guess. They are hoping that you really needed less?
Oh I see can't see needing less yet as I've still got aches and pains on 15
Can you talk to your GP about staying on that dose longer?
Don't think I shall cut down yet till I've spoken to him again
Are they that bad for us we need to come off as soon as poss?
Not necessary-and you need them as long as your PMR is active -read my link -it will explain.
And if you’ve still got aches and pains -you need longer at current dose -or maybe more Pred rather than less.
Pred is not a painkiller - they are reducing/controlling the inflammation caused by your illness - that inflammation is what is causing your pain.
Have a read of this it may help you understand things better -
healthunlocked.com/pmrgcauk...
..and in my view 2 weeks is not enough initially.
They aren't "just" painkillers - they are powerful antiinflammatories. But they cure nothing - they are a management strategy to keep the inflammation under control and reduce the symptoms and damae the inflammation would do left alone.
You start with a dose that is more than you are likely to need and then titrate the dose to find the ideal dose for YOU. In most titrations of medications you start low and increase the dose to find the lowest dose that achieves the desired result. In PMR and GCA and pred you start high and taper in small steps to find the lowest effective dose. the usual method doesn't work - you are always playing catch up and not managing the inflammation well. 15mg is the lower end of the recommended range of starting doses - 12.5 to 25mg. For a lot of people 15mg is enough - but some do need more to achieve the 70% overall reduction in symptoms they look for.
In the past they used higher doses, often 30mg. Then the panic about the risks of pred started and a study found that about 75% of patients achieved a good result in a MONTH. Small women did better than larger men - size matters it seems. So they swung to using 15mg. More recently they seem to be panicking even more - and are reducing the dose earlier and earlier. Personally I don't think it does the patients any favours - they end up allowing flares of symptoms to develop as they overshoot the dose they are aiming for: the lowest effective dose. And either the patients are poorly managed or they get into a yoyo pattern with the dose and we know from experience - that can really cause problems long term as it becomes increasingly difficult to reduce the dose again.
But you will need pred ongoing - just not at 15mg if you are lucky. How are your symptoms on 15mg?
Well I'm still in moderate aches and pains but manageable the pain I'm really suffering with is my lower back and leg . Pet scan showed bursa fluid filled scas between bones apparently and there not sure if this I'd due to wear and tear or PMR also what was suggested if I can't lower my steriods a drug called Methtrexate should be used .
Oh F*S - sorry, naughty of me but REALLY! Why on earth they can't learn to use pred properly and then they would get on better with a single drug. Methotrexate doesn't come with guarantees it will work in PMR and has its own side effects. you have barely started - and if you can't reduce easily it is because they are pushing you to reduce the dose too soon.
The low back and leg are very likely sciatica due to piriformis syndrome - which can be part of PMR
Yes I get my head around one thing then another is offered they said they would rather I was on that one Me thetoaxtate because of my diabetes
Very likely - but does it work? No point being on something that does nothing! You have to try to find out of course - but don't accept their assertion it works for everyne, Because it doesn't.
According to my Rheumy it takes 2 to 3 months to determine whether MTX will show any benefit in reducing the amount of Pred needed to reduce inflammation and which is adding another drug to the mix and possible additional side effects.
Sorry to butt in here but if sciatica is due to piriformis syndrome should I not be tapering when it is bad. Just wondering
Difficult to say really because piriformis can be part of PMR but you do usually get better results from more targeted management - stretches and physio for example. It is an overall problem and keeping the PMR well controlled is important but a higher oral dose isn't necessarily helpful because it affects everything but may not help the tight piriformis muscle which is the main problem.
Sorry for interrupting with a question, but do you know what the scare/panic is about with doctors?! High doses for many years is not good for bone and cholesterol ect., but under 15 mg for 2-5 years? My doctor won't even write PMR on the prescription - just "according to taper plan". I think he is afraid to get questioned - we have an electronic system here in DK where ALL can be monitored by HA.
Some recent study decided there is no safe level of dose. I think a lot of it is a total lack of appreciation of just how disabling PMR can be. They are convinced it is a simple short-lived disorder that can be really well managed with low dose pred until it burns out in a couple of years. But it is none of those things for a lot of us. When it goes on for longer, they assume it must be something else, an inflammatory arthritis for example, and use other medications.
When they don't work, the patient is all too often made to feel it is them - not trying hard enough, exaggerating the syptoms, not appreciating how much relief they are getting. And then "it is all in your mind", go to CBT, get out more, here, take this amitryptiline as it must be nerve pain but with the underlying implication it is depression. Until eventually one or other gives up and the patient retreats and becomes disabled. But none of THAT is put up to balance the damage they perceive pred does used for long.
If I had had to live as I have for the last 6 months for much longer, I would probably give up the unequal struggle. I can't walk far without the pain getting worse and that limits what I can do. I don't have a Blue Badge which would make things easier - so again I limit what I do, sitting at home is so much easier and it doesn't hurt. But it makes me far less fit. Which discourages me from doing more and it becomes a vicious circle. And it is as hot as hell in the afternoons!!!!
Ok PMRpro - thanks - I have experiences most of this and already I dread to see the doctor next week as I struggle to come under 15 mg. I´m sorry that you are not well for the last 6 months? I was sure you were doing well on an appropriate dose? Heat is NOT good! We had 33 celsius yesterday, and I did wet towels and cold foot baths to cope.... Today it is 17!!
Not the PMR - the add-ons of myofascial pain syndrome and bursitis/tendonitis
Any light on the horizon as regards treatment of those for you?Lousy, isn't it? You finally get one batch of pain under control, only to have a new set pop up!
Underway all summer - but even here there are waits and now it's August and they all naff off on holiday!!! Got custom-made insoles this week - spent a small fortune on Monday on the insoles (they at least are tax-deductible), sandals for them and 2 pairs of summer trousers in the sale (still 200 euros!!!!!!) in the shop opposite. I hasten to add they aren't Made in China!!!! Italians clothes don't come cheap!!!!!
200 euros each??😲 That's 100 euros per leg!! Hope the insoles aren't memory foam - useless stuff. Was this your birthday treat?
No - 200 euros for both pairs, 50 euros a leg!!! Mind you - that's is bad enough but it was about 40% off!Not memory foam - the insoles are craftsman made and quite solid - think they are made by 3-D printing after a fancy electronic scan is done of the soles of your feet.
And while the bill for the trousers was a bit eye-watering, I rarely do buy stuff and it WAS my birthday ... I'm worth it 
You certainly are. And they'll probably last much longer than the Chinese stuff, as well as being more eco-friendly.
Not that sure about the eco-friendly though I'm sure they didn't travel as far!!! Both have some "plastic" in them - one pair is standard 70/30 polycotton and the other 3% elastane or whatever the stretch component is! Which makes them next to impossible to recycle ...
Whatever you do, don’t let your doctor encourage you to reduce if you have pain. PMR is very intolerant and always wins unless you keep it under control. Steroids are a wonder drug, sadly they do seem to have rather a lot of side effects which seems to frighten some members of the medical profession.
They frighten me !! I've got 3 stents and that's always on my mind . I would have thought steriods would have taken some of the pain away from my back and leg ? Doc did say some physio might be needed that could be fun ....NOT
Two weeks in
Two weeks into Pred - then!
Update to 6 weeks without Pred
Down to zero and having arm and leg pain
GCA symptoms back at two weeks on 60mg. Anyone else?
