Hi everyone. I have just been diagnosed with PMR. GP originally wanted to start me on 60mg of prednisolone. Having read NICE guidelines by then, I was concerned about that, so he's given me a prescription for 15mg . I have only been on them for one week now, but I'm wondering how I can judge how effective they are. I haven't had full relief of symptoms. I seem to experience my best time about 8 hours after taking the pred (at breakfast) , so I've noticed improvement by mid/ late afternoon at the earliest. Then, come the morning, the whole rigmarole starts over. What I don't know is whether things will improve over the next weeks as the steroids soak in and I just need to wait it out, or whether the goal is to have complete remission very quickly and I therefore may need to consider upping the pred now. Like many people , I've gone from being a jogger, walker, pilates and yoga fan to managing a leisurely amble on level ground in the afternoon or evening. I can't even do some basic yoga positions at present.
I shall contact my GP again to discuss, but thought I'd ask the real experts.
Thanks for your time
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Newplodder
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If PMR, then 60mg is certainly OTT, but if it’s GCA that’s a completely different story.
Some people do get a very quick response, for others it takes a little longer….but after a couple of weeks, if it’s not working, then needs to be reviewed-
not enough Pred, not PMR? or you trying to be active for illness - it doesn’t go away just because your on meds….so maybe give it another week.
Maybe have a look at this - should answer most of your questions -but sorry to disappoint you there is no quick remission.
Please read the links contained within original post -and the replies as well, will give you a good idea of what’s ahead -
Thanks for your comprehensive reply Dorsetlady. I may give it another week then....I'm not really convinced the GP would have any better advice as it appears to be a bit of a guessing game. I would think if I had GCA, he would have said....he is treating me for PMR
Hi, everyone is different and one size does not fit all with PMR. As you know I have responded beautifully to pred. I started on it last December and will be on 4mg in a couple of weeks. I will be off it by November 5th. I believe that a positive attitude accompanied by exercise and a healthy diet help pred to work and put pred into remission. Peeps, you can and will recover from PMR. It just takes you to work with medication. X
I hope you are off Pred in your timescale -and yes you have responded well -as do lots of people.
But as you said yourself one size does not fit all, and as often quoted by PMRPRO there are variations in the disease itself - so there are many things that need to factored in, including other health issues someone may have.
Some people do need more than the standard starting dose of 15 to get things under control. On the continent they go by body weight and I have heard of people even in the UK needing to start on say 25-30 initially. It doesn't get you into remission, it just gets inflammation under control and then it's a matter of finding the most effective dose to keep things under control, which should diminish in time but doesn't always follow a strict linear pattern. A good start would be to read up on the FAQs the brilliant moderators have put together over the years
Ha ha hope not, I think the the rule is something like 1/2 mg per kilo of body weight but capped at something around 30. Sorry my memeory is vague, someone who lived in France when diagnosed once told me her story but I can't remember details
In France, the rule of thumb for GCA is to start at 0.7 mg per kilo of body weight and reduce once a month by 5 mg for 3 months, then tapering according to symptoms. I know that it's less for PMR. Not sure, but I think it's 15 or 20 mg a day at the outset.
There is a summary section if the entire thing is too complicated for you or your GP doesn't want to read the lot. They recommend the lowest effective dose in the range 12.5 to 25mg per day. Every patient is different, one size does NOT fit all. If you haven't had a 70% global improvement in a week or two, then he should try 20mg.
Previously they would start PMR patients on 30mg but then they got panicky about "too much pred" and dropped back to 15mg after some work suggested that 75% of patients achieved good symptom control in a month with 12.5mg: small women did better than large men. The impression we get is that patients did much better in the days of higher starting doses - maybe the patients get less pred, but they don't always get as good symptom management and tend to flare up easily as they reduce the dose.
I woud take that link to your doctor with the relevant bits highlighted and ask to try 20mg. The sooner you take the pred after 4am the less inflammation will have been created with the new batch of inflammatory substances shed in the early morning. That should get you relief earlier in the day - the ideal time is 2am to pre-empt the inflammation so it never gets hold. I am assuming you are taking plain white non-coated pred?
Thank you for your very comprehensive reply. Unfortunately, my GP hasn't filled me with confidence when he wanted to start me on 60mg. I suspect it will be trial an error going forward....and maybe I'm being too impatient also
I was started on 15 mg in June last year with no relief. 20 mg gave me some relief for 16 hours or so. 25 mg and bingo! Had minor discomfort in shoulders (and still do) but I could function more or less normally with virtually no pain. This after not being able to dress, bend or hardly walk. Currently on 4 mg with minor twinges but nothing that would induce me to up the dose (didn't get on with the pred side effects terribly well). Hope you can get it resolved.
Thank you for your reply. I will talk to my GP next week with a view to upping them, as I was hoping for a better outcome than I'm currently having. I manage, but would hate to think this is as good as it gets! I'm only 60 and should be walking up Snowdon next month...thanks again
I'm 68 now. Before PMR I was playing golf 3 times a week pushing a full bag of clubs and doing a gym session once a week. Haven't played golf since and physical exercise has been up and down (not Snowdon!!). Whilst on higher doses I was buzzing but as it reduced I have slowed down. Getting to the stage where I think I may be playing golf again but not getting too excited. Others will tell you with more knowledge than me that overdoing the exercise can be counterproductive. I did too much painting and hedge trimming whilst on 22.5 mgs and have suffered for it since the masking effect of the Pred has reduced with the corresponding reduction in dose. I would think of giving Snowdon a miss... LBM1953 (in North Wales)....
Yes, Snowdon is off my list now. Spirit is willing, but don't think I can trust the body! I think you may be right about overdoing it too....I'm concerned about slowing down, putting on weight and getting osteoporosis, so I guess I'll need to find an acceptable level of activity to keep everything in check. I hate not being able to do basic yoga poses!
I had a face to face with my GP yesterday, first one in ages. We have a great relationship as I bascially tell her what medication I need for the next two months and she prescribes it (plus some spare just in case). When I first saw her over a year ago she actually asked me if I was medically trained because of the questions I was asking her. My knowledge was obtained excusively by reading the invaluable information from the Sages that contribute to this Forum (I hadn't even heard of PMR before). I would strongly recommend that you glean as much knowledge and information from this site at the earliest opportunity so you can speak to you GP from a position of knowledge (if they have suggested starting on 60 mgs that would cause me some concern about the GPs experience). If you are worried about your bones I would recoomend getting a base Dexascan done immediately. I was urgently referred by my GP for one in June last year and the appointment came through this week for 21st July, over a year later! I had it done privately in July last year and it was only £120. Worth doing for peace of mind and as a marker for the future. LBM1953
There are great resources and suggestions on this site to manage those side effects of Pred. Sorry, but sounds like you’ll need to be in the driver seat with your PMR, best to arm yourself with knowledge. PMR/GCA a Survival Guide by Kate Gilbert is a good place to start in addition to this site. Snowden will happen eventually!
But it would be nice - then you can walk up next time! I would suggest walking down but it is never a good idea to do something where you might get stuck. It is very embarrassing if you have to request the MRT to get you down!
I too have only been been diagnosed recently with PMR. I have found splitting my dosage and having 5mg at teatime helps me for the following morning until the Pred kicks in again in the afternoon after my 10mg dosage at breakfast time. This way I can be nearly symptom free for the whole day. It works for me. Good luck.
Thank you for your reply. I'm going to see how it goes this weekend and then look to up the dose and split as you do. Although I've only been on the meds for 8 days, each day has been pretty much the same, and I was hoping for better I guess.
Hiya! I too am a newbie and only been on Pred for a week but this site has been invaluable. I was still waking in a lot of pain at 2.30 am and awake for a few hours the first few days, waiting for 4 pm to take my 15mg. . The last three days I have split my dose and taken 5mg after dinner about 9 pm . No problem falling asleep about 11 then stirring about 3 not in agony , so then taken the other 10 mg and fallen back asleep . Little bit stiff and sore on waking at 8 ish . This has been so much better , maybe try it ! I’m waiting another week as I think maybe I need a slightly higher dose overall to reduce symptoms further but after 5 months of agony and disfunction this is a miracle !
Yes, I'm so keen to get sorted, but I think I should have a bit more patience! Maybe my 15mg needs more time to work before I start changing things. Cheers!
Hello! getting in on this a bit late, sorry! I was started on 20 mg and that worked miracles for me within 24 hrs. Just a suggestion; You have taken a couple of weeks to respond and it sounds like it's not the results that you should be having, so, I am thinking, and I'm no expert, that you need to up your dose and try 20 mg for a month or 2, then start to reduce as suggested on this site. You really need to get the inflammation under control, so don't be afraid to up the dose even as much as 30 mg. It's not like you're going to be on the higher dose for long.
“You really need to get the inflammation under control, so don't be afraid to up the dose even as much as 30 mg. It's not like you're going to be on the higher dose for long.”
That may be true, but as Newplodder is a new PMR patient, the increases need to be implemented by their doctor -not by themselves.
It would be very unusual to need 30mg for PMR - if you need that much you need to be referred to a specialist rheumy. Needing such high doses is a sign it may not be "just" PMR.
Hello. Thank you for your reply. I've decided to give it at least another week on the 15mg. There are mornings when I think things have improved ie my arm is not nearly as troublesome as it was. But the next morning, my hips may start off stiffer....even after very little activity the previous day. I certainly cannot say all my pains have gone, but as the second week has been overall better than the first, I'm hoping the third week may be better again. I'm unsure as to what to expect I suppose. ..can't describe the pred as miraculous....just pretty good so far. Coupled with a concern that my GP has even less idea than me, I figure sticking a bit longer on the current dose may be the wisest course of action. If things have not improved again within the next week, I will discuss raising my dosage to 20mg. I'm fairly confident that 20mg would make the difference, but reluctant to try it if I get to the same place, albeit on a slightly longer timescale by taking 15mg.
Oh ok. Then maybe I will try and speak to the GP about upping them. Having said that, it may take several days to get to speak with anyone anyway....so I may try and get through tomorrow. Am I right in thinking that if I go up to 20mgs, I'd need to be on that dosage for several weeks?
If a patient with PMR is practically in a wheelchair - and it happens, believe me - then exercise is not always an option. You have noted one size does not fit all - but you are suggesting YOUR approach is the one to use.
Who said it had been easy? I have really worked on my recovery. I joined David Lloyd club. I work out in the pool 5 days a week. I put myself on a keto diet and have lost 60 pounds. I also have osteoarthritis and work through that pain. Pred, does not work on its own.
I meant the actual tapering of the dose, not the things you have done that you are asserting are so successful, though actually you can't be sure that is what has done it.
But you would find that many of us were gym bunnies when PMR struck, I continued at the gym for 5 years with unmanaged PMR - I was there every day Mon-Fri for acquafit. I did Pilates and yoga, I did some aerobic classes alongside 80 year old, I could barely walk so there wasn't much option. I have always eaten a pretty healthy diet. When PMR started I couldn't have lost 60 pounds without becoming ill. At no time during that 5 years did the PMR go into remission nor was I out of pain. I'd say I worked pretty hard on MY aim for recovery - and it didn't achieve much. I am not the only one on the forum.
What I am asking is that you don't make it sound as if it is our own fault for not trying hard enough. Many are distressed enough about being unable to look after their homes without being made to feel they should be spending a lot of money on joining a gym - which doesn't have any guarantees either. Many are retired with restricted incomes.
I do not think it is anyone's fault. A gym is not necessary. Plenty of workouts on TV and gentle ones too. If pred did not take away pain it is possible you fo not have pmr as one of the tests for it is to see if pred works. Everything in life has to be worked for. Strengthening muscles considerably helps muscle inflammation. Even if it is just bi cept curls with baked bean cans. Obviously once steroids have got rid of the pain.
Why don't you try reading my profile and what I write? Pred took the pain away immediately I was offered it - I was not diagnosed for 5 years. And the "pred is a diagnostic test" is a myth - pred works for many things. And frankly - there isn't much you can teach me about PMR. I work as a patient partner in PMR research groups and have been doing this for more than 12 years.
well you should know then that after pred building up the muscles through resistance training is the most important thing you can do to help yourself. Movement reduces stiffness which reduces inflammation. Please start advising people to move.
Actually you are not entirely correct. Pred does do that and targeted exercise IS required and it is mentioned in some guidelines. We do encourage people to exercise - to the limits of their ability and condition.
However - PMR affected muscles are a different matter and too much exercise often results in DOMS which is far worse than you would expect in the context of the exercise done. The muscles are unable to heal the microtears that are the main component of training and it can result in long lasting pain and stiffness, which can last weeks or even months. If too severe the condition can become permanent.It parallels the muscle problems experienced in ME/CFS and there they have finally realised that forcing exercise makes patients worse and the "graded exercise" approach has been abandoned.
I think that you are forgetting that I have pmr. I had it for 2 years before diagnosis. I think the stress of covid and lockdown brought it on. Once I started pred the relief was almost immediate. I then made lifestyle changes. For me obesity was a problem so I went on a keto diet and started resistance training in pool. I have tapered as gp instructed and so far so good. I have built up my muscles without difficulty. Water work is gentle and very effective. Movement is essential.
You need to ramp it back prinsted. You need to learn a bit about how pred works on muscle. It effectively "eats" it and converts it into fat. First the fast twitch then the slow endurance. That can't be avoided. Some are more severely affected than others. It also has a secondary mechanism. It prevents the absorbtion of nutrients from your food getting into muscle to rebuild, like protein. Not until very low or off it altogether can you rebuild. Thirdly, when under the influence of PMR the muscle is starved of oxygen via the blood supply and so the muscle contracts and cramps. Until you suppress the inflammation you won't change that. If you try to stretch or exercise the muscles whilst in that state you can damage them and in severe cases you can't stretch a fully contracted muscle which is full of lactic acid, neither can you massage it. By all means carry on doing what you are doing. Good luck. Please don't try to advise others who know more about this..
Not true. I have built my muscles up whilst on pred, lost 60 pounds and got fit. Obviously pred is a poison and is the reason why I have worked so hard to get off it.
It is not possible for muscle to turn to fat or for pred to eat it up. Muscles can get smaller if not exercised and toned limbs can look flabby once a muscle has decreased in volume.
I suggest you do a little research and then come back on this. There are research papers which confirm this. Happy reading and just do your homework first.
good luck with that if that's your source of fact. People often tend to read what comforts their previously held beliefs. Unfortunately proper studies reveal a different picture. I suggest you read my profile before posting anything further.
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This article says it is not possible for muscle to turn to fat. It is physically impossible.
you say you have lost 60lbs since you joined the gym and exercised there. Okay. Good. I was a fit cyclist so I know a little about weight, diet, fitness, exercise, effort, and muscle tone and building. In over 18months I have put on about 14lbs through inability to ride and exercise. That would normally disappear in a months training. Muscle mass is denser than fat. I have lost about 60% of my muscle. If you exercise at the level to rebuild muscle then you overexert your store of energy and risk a flare. You clearly had excess weight to lose and maybe your muscles were weak and the two things helped reduce weight and increase tone and strength. Good for you. Not everyone is able todo what you did. You are still on pred. and may yet discover you have problems ahead. I'm just suggesting you step back and do a little more research on genuine papers before being so gung-ho about it.
Hi Prinsted. There is very little info on your profile. Please fill in . I like anyone who is positive, but I caution you from being so feisty about your approach. I doubt you will find anyone more driven than me and your approach is simply impossible for me. What I have lost and what I cannot do whether I want to or not is a stark reminder of how different we all are. I can only dream of getting to your starting dose, let alone your current one. I wish you well with reduction and remission. If it turns out your approach leads to a flare and reversion to a higher dose then I also sympathise. A little humility never goes amiss.
I am not deriving people. More positivity on this group is required. I have covid at the moment. Obviously not going out to club but still doing YouTube workouts. Most important thing one can for pmr is move. Building muscle strength reduces inflammation.
This is your way if dealing with your Pmr. Others, as u say, but don't really seem to allow, are different. Positivity does not mean one size fits all - U are physically positive. I was mentally and emotionally ‘positive’ throughout my GCA /PMR journey, which took 3years. Largely because I’m a lazy introvert, I found it quite easy to accommodate to a less physical existence and read a lot and wrote a lot and only lost heart and wept salt tears once - and that was side effects and not the thing itself. But without the knowledge and support of this most positive of forums, I would have found the whole thing very much harder. I am endlessly grateful for it. And after all, even Cycli - who is the doyenne of physical fitness - has come to terms with what this condition does to us and allows that there different ways of being positive. Good luck. Carrie.
GCA is totally different and I am sorry you have this condition. Pmr though needs muscles to be built up as well as steroids. Most people can do some form of resistance training, even if in wheelchair. I can,t leave house at moment because I have covid but I am still doing my exercise. Pred is a poison and my attitude is to get off it as soon as I can.
I am aware of what GCA and PMR are - I unfortunately had both! Prednisolone is a harsh medicine with many side effects which are very variable in their distribution; some will have few, others many, most some - and it is certainly good to get off it as soon as possible. But everyone is different- both in the severity of their illness and in how they can best cope with it. I hope your way of coping continues to work well for u. For me, idle as I am, your approach would very quickly have reduced me to despair. I am now as well as I expect to be at 80 and enjoy life, walking most days, but never having done a resistance exercise in my life. We are all different! Positivity comes in many forms. Good luck. I hope your way continues to work for u and u can soon cease to take the effective but tricky pred. Carrie
No, GCA is NOT totally different, it too causes PMR symptoms, it just depends which arteries are affected. There is a cranial version - affects only arteries in the head - and an extracranial version that can affect much of the rest of the body.
And no - I am NOT forgetting you have PMR, you wouldn't be here at all if you didn't. But you are talking about things I suggest you don't actually know that much about.
please fill in your profile. I suggest you don't know as much as you think but I still wish you well. No one should have to put up with the consequences of PMR or GCA.
Hi Newplodder. It appears that your initial request has been taken over. I hope the resulting discussions have been informative. As you can see there are a diverse range of opinions and approaches. Everyones journey is different as is each of us so we have to learn to adjust and interpret the condition sometimes daily. There is no one size fits all solution. If there were this forum would not exist.
Sounds like you may be one of the many who need something closer to 20 mg to start. However, do treat yourself with kindness. You have a serious systemic disease and should not try to carry on life as you did before developing PMR symptoms. Regular but not extreme exercise is important to maintain muscle strength - a walk, not a marathon - and same with everything else in your life until the symptoms are under control and you are successfully starting on a slow taper. Good Luck!
Hi. Thanks for your reply. Yes, I too am debating with myself about the 20mg .... but still not sure what I should do about it. 15 mg has definitely worked, in that I have certainly improved significantly from diagnosis....perhaps 85% to 90% improvement. ...better than the 70% that's deemed acceptable by NICE in the UK. I'm stiff in the hips and shoulders in the mornings, but just manage, get on with the day and things improve to virtually feeling very good by mid afternoon. I have curtailed my activity levels significantly, although still trying to do some activity daily to keep my underlying fitness as good as possible. I guess I'm currently more afraid of pred than stiffness and some pain.
Given what I've learned here, the advice is even if pred flattens the inflammation completely, I shouldn't revert to the same activity level as before diagnosis anyway, because that in itself could exacerbate the underlying inflammation.
So is it better to manage moderately well on 15mg or increase the dosage?
I think PMRpro made a useful suggestion about possibly upping the meds by only 1 or 2mg.....that may be a good compromise for me. I've been trying to educate myself big time before I contact the GP, because I suspect he is not experienced in this field. Thanks again
PMRpro's advice is always the best. I would like to suggest that you should not be more afraid of pred than of pain and stiffness. With PMR our doses are generally low, and even 20 mg is considered moderate, not high, and as PMRpro suggests, a slight increase to really clear the inflammation out would likely only be for a few days. I was fortunate that 15 mg got rid of all my aches and pains, even the non-PMR ones, within a couple of days. As I tapered I put up with what I called niggles, which were probably only steroid withdrawal, and was able to complete a taper actually feeling better than I did at the start of one. But I do think as long as you have some significant level of discomfort, and it does sound as though you do for a good part of the day, that you may need a little bit more for a few days to clear out the inflammation which had been building up in your tissues for some time. Going forward, a very slow taper is best. If the initial inflammation has been well dealt with the earlier tapers can be easier than those which come later. The lower (the dose) the slower the taper!
All in all, however, you seem to be doing well and have a good grasp of what you are dealing with. All the best!
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What are these head symptoms - GCA or pred?
So far, so good!
Flare has subsided--now what?
