Hi all. New member here. I saw my Rheumatologist last Thursday after GP referral with hip , knee stiffness and particularly shoulder pain . He’s treating it as possible PLR although not ruled anything out yet. 15mg Pred started on Monday. At first, I thought I was getting an immediate boost. I slept on my side without strong pain relief for the first time in over a month. However, after 4 days on Pred, shoulders are as painful as ever. Im a little disheartened as my expectations were raised when I finally got the drugs. Am I being unrealistic? I have my 1 week review with GP on Monday. What are others’ experiences? How long was it before you could use your arms normally after starting treatment? Im booked on a golf holiday end of April. What are my chances of swinging a golf club by then? Just looking for other experiences really, I’d never heard of the condition 2 weeks ago. This looks like a great on line community for other sufferers. Thanks in advance.
Just Started Pred. Am I Expecting Too Much Too Soon? - PMRGCAuk
Just Started Pred. Am I Expecting Too Much Too Soon?
My shoulders have never become absolutely normal. I had a garden pruning session on 15mg because I felt a lot better. The results were dreadful. I am not sure that swinging a golf club on a golfing holiday will be wise in the early stages of your illness.
Hello, people vary a bit with how long it takes to settle with some getting the Pred magic within hours and some need to wait a couple of weeks. The initial starting dose is usually held for 4-6 weeks. You’ve seen some results and at 4 days I wouldn’t panic yet. You won’t know yet if your dose is adequate for the level of inflammation you have now (if you have PMR) and you might need more. You also have to play your part and avoid straining joints and muscles and over doing it. The trouble with Pred is that it can make you feel you have more in the tank than you have and any relief adds to that illusion. You’ll get more expert comments soon, so sit tight.
Hi and welcome,
Yes, I think you are being slightly unrealistic - it's true that some seem to get a miraculous result within hours, but for most it takes longer, up to 3-4 weeks sometimes...and don't get too excited about your golfing holiday yet...you might need to revamp some of your playing days - to 9 holes rather than 18.
Keep a note so you can explain to GP how you have gone on this week, you may need longer on the dose, or you might need slightly more - the range for starting dose is between 12.5 to 25mg - so there is room to manoeuvre if required.
Maybe have a read of this for more info - and expectation - not as bad as first read might seem...
healthunlocked.com/pmrgcauk...
The point [at the end of the day] is that it is your illness, your body, your personal reaction to the meds...not everyone is the same. so don't necessarily judge yourself on other's experiences... but if you don't feel the medication is working then you need to be honest with your GP...they may also have unrealistic expectations if they aren't experienced in treating PMR.
Thanks. The information in the link is especially useful both for me and my wife to understand what’s happening.
Good... just hang on to it, and re-read it in a few months time.. It will probably make more sense then !
Take care..
15 mgs is a modest start dose. I needed 20 mgs and then I got the Pred miracle within 48 hours.
Hi and welcome. If you don't learn anything else with PMR you will learn patience!
15mg is the bottom end of the starting dose range - you may be someone who needs more to get the dramatic response some expect, it doesn't always happen. I started at 15mg and had a miracle in under 6 hours. However - I still have PMR nearly 14 years after starting pred, 18+ years altogether as it wasn't diagnosed never mind treated. I hasten to add, this is a rare form of PMR.
And have you adjusted what you do or are you still trying to swing the golf clubs? Lifestyle changes are as important as the pred
Thank you. I’ll keep to 15mg til Monday and discuss with GP. Seeing the rheumatologist again in a couple of weeks. I have modified lifestyle by necessity. There’s no way I could swing a golf club at the moment and dog walks are a lot more leisurely due to muscle tiredness. I was pretty active before, until the symptoms started to get the better of me early in the New Year. Patience hasn’t been my best quality but reading the posts on this forum I guess I’m going to have to change that. Still hoping for the Pred miracle to kick in though!
Oh it probably will - but it only happens if the dose is high enough!
Reading Zenedee's post reminds me to bring this post to your attention - it discusses the gorilla!
PMR is life changing. The steroids work wonders very quickly, however you have to respect the PMR you are not suddenly cured and you cannot carry on like normal. The mantra is rest, rest, rest. I bet you just thought great, and carried on as usual. The PMR is always sitting there waiting for you to not respect it!!
It took me a few weeks to notice I was alot better We re all different!
I started on 15MG and I had PMR I suspect for a good 4 to 5 months before I was diagnosed by my osteopath not my doctor. Because I could do the simple exercises they ask you to do at hospital my diagnosis was atypical PMR. For me it took a good two weeks before I felt the benefit of prednisolone. However, once it kicked in I felt marvellous.
Hello and welcome to this supportive community. It can be devastating when you first learn you have PMR and start trying to manage this condition alongside the life you enjoy. You and your wife and family might have to be patient and considerate that things have changed and that you now have a gorilla sitting on you.
You will get back to the things you like to do in due course but for now you must let the inflammation (the gorilla) slowly wander away. It might not get the message at 15mg and you might need more for a week or two but then you and the gorilla have to come to some sort of understanding. You might need to teach the gorilla to play golf in a different way so that you are not left crushed by the activity.
You do get used to it, you just have to be patient, kind and respectful of this lumbering new companion, best wishes, Chrissie
Started at 20 mg Pred for PMR and had my overnight miracle, to where I could actually move my arm to the nightstand and my thought was "I just did that!", after 5 months of barely being able to move and undiagnosed. It got progressively better after that first night. Maybe you require a slightly higher dose of Pred? Wouldn't think about the golf just yet. After a year on Pred, I still wouldn't think of golfing, but you could perhaps build up slowly...perhaps. You may feel good on a given day, but if you overdo it, the next couple of days will be not good. Let your body do the talking. Pace...pace...pace. Unrealistic? Educate yourself with all the information this wonderful forum provides.
Yes, like other people who have already replied, I think you are being overoptimistic - BUT I note you mention 'strong pain relief' - before Pred - were you getting any level of pain relief from other medication? If you were, I wonder if you have a mixture of conditions - including PMR.
I could have written your post practically..I too just started 15mg a few days ago and the first day or 2 my hip didn't hurt, nor my back when I woke up.. and the same as you, I could sleep on my side for a while the first time in 4 months. But since then, I still feel some pains there and in my neck (my worst spots). I am going to give it 2 weeks then ask to move to 20 mg. I am fairly tall and not obese, but definitely not thin at age 55. I think 15 mg may not be enough for my height and weight. For me they did rule everything else out, but my blood labs were normal (which can happen)- so my GP is trying this at my suggestion. I will follow this thread!
Hi. We seem to be starting a similar journey together. Quick update. I saw my GP yesterday and agreed to stick to the Rheumatologist’s plan of 15 mg for 2 weeks, and if symptoms reduce by 50%, then reduce to 12.5 mg. Obviously I’d prefer to be symptom free. I still have aches particularly in shoulders that usually start around 5AM then settle as I shower, and take my Pred. However I’d probably say this represents a 50 % reduction compared to before Pred when sitting and standing caused a grunt, and the shoulder pain was unbearable. Seeing rheumatologist again on 9/3. Let me know how you’re getting on.
50% is not enough - all guidelines I know of look for at least 70% improvement. If you haven't got that - you need to try a higher dose NOT reduce the dose.
Riight. I’m upping to 20 mg this morning and will face the wrath of the Rheumatologist and GP when I see them. I want my shoulders back! I’ll report back with results.
Not sure if you’ve seen link below -and apologies if I’ve sent it before .
2 weeks at initial dose is not long enough, and as PMRpro has said neither is 50% improvement -and you may not be able to manage the said reduction to 12.5mg -some can, but many can’t. Especially if the initial dose has not cleared out the build up inflammation and is also trying to deal with the daily shed of more inflammation
Hi , you may need to be given a higher starter dose, I had similar experience was put on 20mg after an initial dose of 15mg helped but didn't completely settle my symptoms, 20mg completely got rid of the symptoms, now down to 10mg but I've taken my time reducing the dose, don't let them rush you. I hate being on Prednisolone but hated being in pain more. Good luck.
CatyLizGib, How long did you take the 15 mg before you upped it to 20 mg? My symptoms don't seem much better 1 week in now, hip pain is back this morning for instance...Thank you! Sidra1968
I upped to 20 mg after a week on 15. Started this morning. I’ll let you know how I get on .
Ok, thanks, very interested in how that works. I am very impervious to most drugs compared to 95% of people (no side effects ever from truly anything), so I assume 20 mg would be better for me. Ironically after I posted, I have felt the best today than in a long time. I just realized I was going through my day "normally", singing a tune as I cleaned, I actually just cleaned the tub - been a while because of pain. Making myself stop now as I feel a bit of neck/trapezius pain..yesterday I read that we overdo when that "normal" day happens.
Don't!!!!! The pred working is NOT a free pass to go back to normal life! If you do, your muscles will let you know and you will think the pred isn't working. YOu ahve a new normal now
Blue Spaniel..funny, as of this morning my hip pain is basically back..and am 100% considering upping it to 20 myself to see if that works..but I don't ant to tick off my GP lol
Update. I upped my dose to 20 mg 10 days ago. Symptoms now much improved but still some residual deltoid muscle pain in the morning before I take my Pred. I saw a different rheumatoid today who suggested I stick on 20mg for another week then drop back to 15mg for a month then 12,5 for a month then 10 before another review. She was concerned that I was still getting symptoms at 20 mg and after nearly 3 weeks on Pred and there may be some arthritis in my shoulder but on examination we think it’s the muscle rather than the joint causing the pain so we’ll continue to treat as PMR. Blood markers are back to low levels but Vit D is still low.
Often such specific pain in a muscle group is myofascial pain syndrome - and it responds better to targeted treatment including manual mobilisation. Is it all over the deltoids? Or at its attachments? Have you any spinal problems? Cervical spine problems can affect the shoulders ...
Hi PMRpro. No I haven't had any spine problems and exercise stretching and pressing on trigger points is helping a bit. I've been sent to physio for them to have a look at it.
From personal experience would have expected that arthritis pain would be masked at 20mg -so more likely PMR.
But do be careful about the proposed taper especially the first one - that’s a 25% drop -way above the usual recommended - I’d be inclined to do 20-17.5-15mg.
But if at any time there is a return of pain (apart from steroid withdrawal which is usually apparent a few days after reduction and then goes) -you need to discuss situation.
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