This was in my inbox this morning - a notification from a site that sends me publications about PMR and GCA, I haven't read all of it yet but it is definitely worth reading and even maybe making a copy to flourish at a sceptical GP if you are having problems as it emphasises the complexity of PMR which is now being realised and was talked about last week by Prof Dasgupta in his webinar.
It is in medic-speak of course but large sections are clear enough if you read slowly.
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Hi I have just had a read of this article as I continue to increase my understanding of PMR. What I find interesting is the talk of "steroid sparing alternatives" but with Ritiximab they inject vast quantities of steroids at the same time and if you add up that volume of steroids 2x ever 6 months it is far more than 2mg/day of steroids! I am also unsure how they separate the impact of huge injected steroids from the impact of the biologic - thoughts?
On a sperate note...after your helpful responses to my post about GPA and PMR I took 5mg steroids for 5 days and have reduced to 2mg a day for the last week and I am pain free. I am now considering trying to go down to 1mg to see if that is enough to keep me pain free. I am seeing my Consultant in 2 weeks to discuss my hypothesis that GPA is in long term remission and my issues are PMR.
How many 1mg and 5mg tablets do you usually get for PMR on a prescription at a time? I am still running off my stocks from 2 years ago when my GP decided to randomly prescribe a "top up" as exactly what my consultant had prescribed for my first major flare (20mg tapering over 4 months), so I have never had a "PMR steroid script". Any information helpful.
Many thanks for all the information you post it is really helpful.
Rituximab isn't used a lot in PMR and GCA in the UK but administering a single large dose of pred at the time is totally different to ongoing daily oral pred. Pred has a half life of about 2-3 hours so the entire dose is effectively out of the body in about 24 hours and won't be replaced. The antiinflammatory effect of pred lasts somewhat longer but is still only a few days at most whereas Rituximab maintains an effect for up to 6 months. Rituximab or any other biologic wouldn't be used for a patient who had got down to a low dose anyway - the benefits and risks are compared before a decision is made.
In your postiion I wouldn't be in any hurry to drop to 1mg, be sure the 2mg is still plenty before you do.
I get stocks for 2 months as standard, but I don't live in the UK it isn't really relevant. If you have large stocks - check the expiry date carefully!!
If I have read correctly, PMR used to be considered a benign clinical syndrome and is no longer? Long-term treatment with steroids is worrying with increased mortality. Quote:
"However, we now know that it (steroids) causes many disabilities and the widespread administration of glucocorticoids actually makes people more susceptible to increased morbidity"
I am worried. There are so many people on this forum who have been taking Pred for many years. Is it really that bad?
It isn't half as bad as some doctors make out - in my opinion at least and I've been on it for 16 years!! For some people it DOES have nasty adverse effects
Pred isn't necessarily associated with increased MORTALITY - that is death - but it is with increased MORBIDITY, developing conditions as a result of being on pred, such as obesity, diabetes, osteoporosis, which themselves can result in increased mortality. We say a lot that it is possible to mitigate or avoid many of the adverse effects but a lot of patients aren't told that or if they are, don't take the appropriate actions. Obesity and diabetes can both be improved for the majority by cutting carbs drastically - but it requires committment and FOMO probably gets in the way a lot!!
In RA, use of methotrexate has been found to reduce the problems - I don't know if that applies to PMR but does suggest part of the problem in RA is due to poorly managed underlying disease.
But you have to look at it from a broader viewpoint - inactivity is also a risk factor for weight gain, diabetes, depression and osteoporosis and pred allows people not only a pain-free life but reduces all those risk factors. The majority of patients aren't on pred at high doses for life - PMR does often go into remission and if they need pred longterm it is usually at lower doses.
I had PMR for 5 years before pred was offered - I wasn't diagnosed, it wasn't choice. Frankly, even if longterm pred were to shorten my life by a couple of years, I don't want to continue living as I did those first 5 years - I was in constant pain, depressed, housebound if I couldn't get in a car and drive to where I was going and park close. I couldn't use public transport easily or comfortably. I did manage to get from Durham to my flat here on my own, by bus to London and then Gatwick, plane to Innsbruck and train to the village. Relatively little walking was required luckily! But when I got here I slept for 3 days - I stayed for a couple of months so that was fine - but wouldn't have been any use for a week's holiday would it! With pred I have a normal life, have been able to travel the world and go camping, still do, on my own with a VW campervan. Without pred - I would be dependent on carers.
Thanks for clarifying mortality and morbidity, I'd forgotten the difference and need to amend my earlier reply. I still agree with you though that steroids, if used properly, and mitigatign the side effects, are a godsend
Thank you, and very informative info'. I'm seeing my NHS Rheumy next week. Having been on Pred' since 2017 (note you've been on for 16 years), the consultant is keen for me to take DMARDS, namely Sulfasalazine. My inclination is to resist DMARDS, and carry on with the Pred' currently at 5mg & continue with an ongoing tapering process at intervals. So far unsuccessful when reaching the 1mg mark. Ever hopeful!
So does that mean you can get to 2mg pred without problems? If so - I'd politely refuse sulphasalazine, which doesn't have much of a track record in PMR!!! Most rheumies would be pleased someone was well under 5mg and stop pushing ...
I've only read it quickly so I may have missed it, but this article fails to mention HCQ as an option and very little research has been done on it. I've been on it for a couple of years now and it seems to be working miracles for me, I wish it could be studied. There's a huge long list of references at the end of the article about testing other DMARDS
Unfortunately not, hence yo yo'ing all these years. I have probably been reasonably stable at say the 3.5mg mark. Am currently back at 5mg with arms & shoulders not happy, which I believe is the result of dropping literally, as per Rheumy's last instruction following a crippling flare with ESR at 44, from a starting point of 20mg by 5mg ever 2 weeks to 1mg & remaining there. Lo' & behold, as expected, flared again, and words with GP resulted in my increasing to 15mg & dropping as before, though sticking at 5mg. So it goes on. My records now record seronegative rheumatoid arthritis. Yes, the battle with PMR continues. Hoping not too much waffle.
So at 4mg you would probably remain stable? I still wouldn't want sulphasalazine myself. The desperation to get patients to zero pred come what may does many a major disservice and results in them ending up taking MORE pred not less.
Thank you Pro. I've added it to the Homescreen of my phone for further reading. I'm hoping to find some way to forward it to my GP, as she is still saying my pain is not PMR and we won't be reducing by .5 mg. I said I'm telling you what I'm doing for your information. If my body can handle .5 mg better than 1 mg, what is wrong with that? Then she went into my Osteoporosis and pred is not good. Blah blah. I am aware! So I'm at 4.5. Sorry had to vent. Lol. Wore a Holter monitor for the last 24 hours. Nothing eventful unless it recorded something while I slept. Next step may be a stress test if I can actually walk on the treadmill. GP says she doesn't think I can. If it has handle bars on the sides, I can. Thanks for the article. Always informative.
I wish it was written in Plain English as it is hard to decode but it does seem promising, not least that rheumatologists are starting to study and understand the diseases they're supposed to know how to treat, though they still have a long way to go and we still actually know so little. Interesting to hear about the potential use of sarilumab, first I've heard of that. Would testing for IL-6 be a potentially better marker than the generic CRP then? Also it makes out steroids are bad, using terms like causing increased morbidity, but they can be very useful if used properly. It's quite possible that it's uncontrolled inflammation that leads to increased morbidity, with elderly people being told their PMR must have gone because that's what the text books say and suffering terribly left in pain untreated. The trouble is the dosing regimes laid down in guidelines til now make no sense. Why, if you have a disease that lasts for an average of 3 to 5 years (we don't know exactly but studies have inidicated as such) do doctors try and wean people off steroids too soon and too quickly, from 15 to zero in 18 months and not realise it's asking for trouble in terms of flares and relapses?
I thought a lot of it was fairly comprehensible read slowly, you don't have to understand it ALL, The point is, that emerging knowledge is showing that it isn't as simple as they thought, something that applies to practically all of medicine. There IS increased morbidity with pred, and some of it occurs however carefully you use it. Studies have SHOWN there is increased likelihood of other disorders which can be attributed to pred, like it or not. In RA, pred alone leads to increased morbidity, adding MTX as well reduces morbidity.
Sarilumab is Kevzara.
They say there are other options as markers, including IL-6, but ESR and CRP are easily available unlike IL-6 and IL-6 and the others are also non-specific.
To people with the right background, it is plain English. I could translate that so your granny could understand it - but it would be a hell of a lot longer because it needs one word where I would have to use 10. Or more . And when you are publishing for your peers, words count.
Plain English actually needs fewer words as papers like this are written in the passive tense with abstract nouns instead of action verbs. Or have I misundestood - are you saying they need to pad it out with more words? For example 'we have garnered an increased understanding' could be 'we now better understand'. On the whole it is a positive article and gives us hope that we are at a good turning point for new discoveries. I'm thinking though don't throw the baby out with the bathwater, in the short term there is also scope to use what we have got, ie steroids, better and more effectively too
No - I thought you were complaining about the technical stuff. If I;d been given it to proof read I probably WOULD have suggested that but it is how their seniors taught them usually.
Thanks that’s really interesting. I’m concerned as I’m almost at 3 years of being on steroids and my current dose of 7.5 isn’t even controlling the symptoms after an awful flare which started before Christmas. I’ve been having skin surgery and I’m about to have surgery for blocked tear ducts and every doctor I see says you shouldn’t be on these steroids now it’s too long, they’re really not good for you……. It’s all quite depressing. I do take Mxt as well but I’ve lowered the dose to a minimal 7.5 as dermatology advised, to cut my skin cancer risk and I’m beginning to think maybe this is why I feel so awful . It’s either go back to my original dose of 12.5 Mxt or an increase in steroids, what a choice.
It's a dilemma - but effectively, either you take enough pred to manage the inflammation properly or it isn't really worth taking it at all. If you aren't on enough, the left-over inflammation just builds up until eventually you are back where you started without pred.
To say "you have been on pred too long" is rather silly - if they diagnose PMR, then in the current climate in the UK, it means the only medication is pred. And you need pred as long as the underlying autoimmune disorder that causes the symptoms is active, They wouldn't say to an RA patient "you've been on your medication too long".
However, it might be worth asking your rheumy about other drugs such as hydroxychloroquine - we have a few people on the forum for whom it has been a game changer. Like any of the DMARDs it only works for a few - but you might be one. Maybe if your dermatologists had an autoimmune disorder, they would understand. Yes, the immunosuppressants may increase the risk of BCC - but not using them may increase the risk of other things. I had PMR for 5 years without pred - if I had had to continue like that, I would have been housebound, seriously depressed and possibly even suicidal.
I will never forget that first day with pred - took 15mg at 10.15am, standing outside the pharmacy! Went home and literally crawled up the stairs to the computer as usual. About 4pm I stood up and walked downstairs, made a cup of tea and took it back upstairs. Normally, not putting the mug on the top step I could reach and crawling up. amd then stood there as I realised what I'd done. I cried!!! And then the rheumy didn't want to hear about the difference it had made. After 3 or 4 months I could stand up without the excruciating pain in feet and hip joints as I put my weight on them. Pred was a wonder and saved my sanity.
Well said, hear hear! There is absolutely no point taking lower steroid doses than you need, you just end up in a much bigger mess through uncontrolled inflammation that snowballs, it's counter-productive. In my experience and in other hundreds of anecdotal tales, which is all we have to go on as no proper research has been done yet. They could take two cohorts, one given the standard reduction profile and one that tries to actively keep inflammation under control and compare the two, then they'd know. Twelve years ago the Quick and Kirwan paper said more research was needed but we're still waiting
It is another DMARD, it suppresses the immune system and has worked for a few people to reduce and even get off pred. But like all of them, it works for some and not for others so you have to try it to see if it is for you. Like everything, there are potential side effects.
Thanks for this. And for those who take this (and other DMARDs) and reduce Pred, does the body then become dependent on these drugs and coming off them once PMR ‘burns out’ is challenging?
In terms of stopping the medication, no, you can just stop taking them from one day to the next. It will depend on whether the PMR disease process has really burnt out - people have thought MTX was doing nothing but when they tried stopping, the PMR symptoms returned,
This is very useful info about HCQ. I can't understand why it's not tried more for PMR as it’s used in other autoimmune conditions and was also given to some immunocompromised people who got Covid. It seems to be working for me
Hope it continues to work for you and your Pred dose can be decreased. Your experiences are so helpful for others. Long term PMR is so very challenging .
I've just gone down from 11 to 10 and feeling confident that things are continuing to improve and I might be able to reduce again in a month or so once winter is out the way. Bearing in mind at one point I was on 30 and stuck around 22-25 for years before starting the HCQ
I’m sure you’re right . I’m just not taking enough pred at the moment. I’m going to go for it and up the dose to see if there’s an improvement. I’ll talk to my GP who seems to be quite on the ball and get a rheumatologist appt to discuss options. Hydroxy might be an option. It must have been so hard to have this without any help, as you did at the start. It’s really debilitating.
Thank you for this! Just had a quick look. Interesting about subclinical GCA (which I have - subclinical LV-GCA) - apparently no agreement on how to treat it. I was not given high doses of prednisolone, doing well now, but worried about delayed effects.
I'm just getting round to reading this in detail, it's actually a very good summary of where we are with PMR despite its 'woollyness'. I'm glad I had another go at it!
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