after 4-5 months of severe aches and pains and initially being treated for PMR, which then stopped as I didn’t respond to pred my rheumatologist ordered a CT/PET scam as he thought I had LVV !
I was very shocked at this prospect. However after reviewing the PET/CT my vessels are inflammation free and he has now confirmed that it is PMR !
SO TODAY STARTED ON 15mg prednisolone. Roughly How long should it take before I start to see some improvement ?
Hi,
If it is PMR then then one wonders why it didn’t respond to Pred the first time around. How long were you on first time?
Most would expect a noticeable difference with a couple of weeks -sometimes quicker than that -provided 15mg is enough -it isn’t for everyone -and you may one of those patients.
So if you don’t achieve a good response within couple of weeks, you need to contact Rheumy.
Might like to have a look at this -
healthunlocked.com/pmrgcauk...
thank you Dorset lady .
Last time I was on 20mg pred for 5 days with no response so discontinued.
This time it’s 15mg for longer course .
I will see rheumatologist on 8/10 so hopefully he will adjust if necessary
Well 5 days may not have been long enough, all depends how much built up inflammation it needs to work on as well as the new daily amount …let’s hope a longer trial will prove more successful.
Hi. This all happened to me too. I ended up going to 25. The doctors didn’t like it actually they agreed to 22.5 which didn’t quite work. I upped it. Felt better in a couple of days after trying for weeks. Then had to go to zero for the scan relatively quickly. Was told after this you can go back to whatever “you know 10”…. I thought no thanks. Went up to 20. This time that cut it. And I’ve been tapering since that point. That was jan. Now at 10.25. Yes funny dose but it’s working so hey ho.
Originally pred of 15mg was July 2021 after having pain since March. I think the length of time between pain and diagnosis let the inflammation build up. The same could be true of you. It was the august when I got relief at 25. But by then was under a rheumy who ordered the pet scan and fast reduction due to my age that old chestnut and not being typical cos started in my thighs and was all day. I like you turned to this group having read all the “official” stuff on the nonsense about having to be 70 and only shoulders and hips. And worrying I wasn’t responding to 15 and being a gazelle over night on this dose etc etc. I tapered slower than she wanted for the scan. I’d lost my dad and job. hence taking till jan this year to get to zero for scan. Proved PMR now doing it my way Sorry bet you wish never asked ….just wanted to say you aren’t alone in this kind of situ
What was your dose of Pred first time round, Bluepin?
What dose did you not respond to? 15mg is at the bottom end of the recommended range for starting dose - lowest effective dose in the range 12.5-25mg is what the experts say. If you are on enough then the response can be very fast - I could walk properly again in under 6 hours after the first dose! But if what you need is 20mg - it could take a few weeks. If what you need is 25mg - you might not show an improvement at all.
rheumatology.org/Portals/0/...
dear PMR Pro
20 mg last time , stopped after 5 days , this time 15mg and to persevere longer
I DO wish they'd learn from past mistakes - if you'd had no effect with 20mg after 5 days - what on earth is the point of starting lower! 20mg and persevere longer would have been the place to start.
Hi, PMRpro. HOW do we tell them this, when they are the ones who have done the university, and have the degree, and the "experience"? I have to see my GP next Wednesday, and last time I saw her she argued with me, saying she had "lots of patients with PMR". Now I have to make her listen to ME, and MY experience.
I'd ask for the figures! 'Cos I bet she DOESN'T have more than a few. And ask if she has done any better with the others than she has with you!
I wrote a letter to my gp expressing my frustration and copied rheumy in. Gp rang me to go see him. Said they can’t over rule rheumy and she did nothing either but at least I knew I’d said my piece and more than would have in person too as she used to poo poo anything I said. But in writing it’s on record so they take more seriously
Really? Funny how a lot of people give up on the rheumy and stick to their GP ... A good GP is infinitely preferable to a bad rheumy.
yeah. I’m just under the gp now. She told me nothing coupd do for me as I wouldn’t take methotrexate. I dunno why I was still with her after the scan showed PMR. Was glad to leave her was always a stressful appointment. My gp appears to be leaving me to it so I assume that’s his way of over ruling her quietly !
But she has abdicated responsibility - up to the GP alone. Nowt to do with the rheumy now.
true. Maybe that makes him brave…. I’m just glad I’m out of pain now apart from one shoulder sometimes. The rheumy said that was something else too as one side. But didn’t follow it up so who knows. It goes away halfway through the morning
Could be a bit of the PMR that is worse than the rest - like an extra dirty spot on the floor that didn't go with just the mop ...
that proper made me lol. Love that analogy
That's a great analogy for a lot of things. I'm going to remember this one
interesting your GP says she has lots of patients with PMR as mine told me she only has 2 of us in her whole practice. She is a wonderful GP and listens to me and my pain and supports the use of Steroids for the purpose they are intended and says she wishes everyone would stop making it about time on the medication vs the results needed and work towards pain free! Sounds like you may need a different GP if she doesn’t listen to you and what YOU need. Good luck
I took 15 hours 26 minutes!
OMG , that is quick.
I know I only took the first dose at 09.00 today but tentatively I can say I think my pain is less already 🍾🍾🍾🍾🍾, time will tell
Don't go mad now - no catching up on what you haven't been doing!!!
hi Bluepin 😊
Just to add, I started on 15mg and it took weeks to take effect. To say I was disappointed is putting it mildly! They were just about to review diagnosis when it kicked in…..so, another example of the fact that we’re all different.
Good luck and hope it continues to work for you this time around 💐x
thank you , yes is do hope that it works this time around and this time I will stay on it for longer before we say that it isn’t working ! I would really like to get back to a bit of gardening and being more active once I am pain free .
I have just woken up (03.00) after 5 hours sleep to get a glass of water and this is the first time in months that I don’t also have to get something else to help with the pain ( nothing really helps though does it ) before I could lie back down again!! But not tonight !
I have a saying that “ I am pessimistically optimistic “ that this thime pred may work !! 🙏
A study found that 75% of subjects got relief in a month when started at 12.5mg - best results from small women, poorest from large men.
Hi Bluepin, I was started on 40mg pred and my severe pain and stiffness evaporated within 24 hours. Six months later I am on 15mg, starting to taper to 12.5mg. I can't help feeling you are not on a high enough dose to really punch the PMR inflammation out. Just my 2 cents.
As always PMR pro is spot on. If 20 mg didn't work then why give a lower dose. Better to try 25 mg. You do better to zap the accumulated inflammation with a higher dose and then descend smoothly and slowly to the dose that manages the inflammation on a daily basis. Overall the dose of steroids will be much lower.
Patterns of steroid dosing have changed for many conditions over the years and the move has been to give a higher dose to zap a condition rather than plod along with an inadequate low dose.
Do speak to your rheumatologist.
BTW I was almost paralysed by PMR, within 24 hours on 20mg , I was back to normal (until GCA struck a month later)
took me three weeks at 30mg to get the pmr under control. After that I was able to taper without too many issues.
Everyone’s metabolism is different, so don’t expect too much too soon!
Patience is the name of the game.
Good luck
Paddy
My GP started me on 50mg for three days, then down to 25, 20, 15 then taper. I don’t think he had a clue, and nor did I, and I hadn’t found this forum at that time and had never heard of PMR. I was just so grateful to have some sort of diagnosis and to be able to MOVE after months of pain and stiffness and ineffective pain relief.
Sounds to me like you weren’t given a large enough dose to start with, which is why it didn’t seem to work. If you have enough tablets of pred why don’t you just try increasing the dose for a couple of days and see if it helps get the inflammation under control. If you have taken your 15mg today already, why not take and extra 5mg before you go to bed tonight and see if that helps.
None of us wants to go against doctors advice but we learn to know what our bodies need to keep PMR in its place. Doctors, bless them, don’t have to live with it.
I was started on 15mg Pred but it didn't touch the sides. Went up to 25mg and the pains abated almost within hours. 18 months later I'm down to 7 and have not suffered any flares (yet?) but I think I'm one of the lucky ones.
I started on 25mg within couple of day's felt so much relief as pain was easing and could start to move,oh heaven.I am on Actemra now after bumpy road and doing ok.Good luck.xx
After suffering for over 6 months I was finally diagnosed and put on 15mg pred to be free of any symptoms within 24 hours. However because my occipital headache hadn't completely gone, I was upped to 40mg with GCA diagnosis. Now 12 months later I am down to 7mg with a few niggles each time a week after I dropped the dose but which clear up after a few days.
My PMR started so gradually that I didn't really notice how bad it had become until I couldn't turn over in bed or get dressed etc. Hips, lower back and knees only.
I found a difference within a few hours. I could sit up, climb the stairs and walk instead of shuffling. The pain wasn’t all gone but relief was just great. Now been on PRED for 4.5 years and down to 2.5/2. There is no quick fix despite what GPs tell us . Good luck 😊
if they found LLV, why such a low dose and not 25mg? Where did the scan show the inflammation? Only in the joints?
My crazy internist doctor put me on 80 mg of prednisone. I was cleaning my bathroom after two hours. But that super high dose created cataracts in both eyes in a month and I had to wait for my surgery for five months. Then Covid hit and I went another three months after surgery with out glasses.
Listen to your body. We are there for you!
15mg got me total relief within 6 hours - but then I overdid it the next day.
Regarding rheumy v GP: My rheumatologist wanted me to drop from 10 to 7.5 and I refused. My GP agreed, after initially saying 7.5 because, I suspect, he didn't want to go against the rheumy. I agreed with GP to go on the very, very slow taper and it has worked fairly well. I subsequently sacked the rheumy.
I was started on 20 mg of Prednisone by Dr Alam, Rheumatologist at Marshfield Clinic. My pain stopped within 10 minutes…..a miracle! I continued on Prednisone for 11 months while he guided me. While I no longer need Prednisone I am left with weakened leg muscles.
pS….What is LLV?
LVV - large vessel vasculitis
Certainly was a miracle - since prednisone takes well over an hour to get into the system and be processed by the liver to produce prednisolone which is the active substance!
Finally got a 'definitive' PMR diagnosis
PET and Cortecosteroids
PET- CT scan
