reducing steroids
Posted , 8 users are following.
I have had pmr for nearly three years now, after two years my consultant was keen for me to reduce the steroids altogether. She quoted inflammatory markers - crp 10 and esr 26 just over the upper limit. I was on 6 mg in August when these tests were done in the afternoon. I am always much better in the afternoons would this give a lower test result? I have reduced the steroids now to 3 mg but this is having a huge impact on life. I feel I still have pmr the symptoms on this low dose are almost the same as when I was first diagnosed. My consultant thinks the pains are coming from osteoarthritis as the inflammatory markers are low hence the advice to come off the steroids - could she be basing her advice on artificially low scores because it was the afternoon and the steroids I was taking at the time.
0 likes, 37 replies
MrsO-UK_Surrey
Posted
Over a couple of years into my journey with PMR and GCA, like you I reached 3mgs and had a major flare making it agonising to walk. I had to increase the dose to 10mgs and the relief was almost instantaneous. With a CRP of 10 (normal 0-5) and your sympoms "the same as when first diagnosed", I feel that you are also experiencing a flare in the inflammation.
Many of us feel better later in the day once the daily Pred dose has kicked in, but I doubt that the time of day would make much difference to the blood test results - Eileen might be around on here later and I'm sure she will have the best answer on this.
If it was me, I would try increasing the dose, at least to 5mgs, to see if it made a difference - if it does - and I hope it does - then that will provide you with an answer. Good luck.
EileenH
Posted
Hi Dalzell and welcome - though I'm sure you'd REALLY rather not be here!
I really don't think that the time of day would make any significant difference to the ESR reading even though we do feel better later in the day usually, usually because gentle exercise loosens up the stiffness aspect of the PMR and if you are on any pred at all it will have reduced the inflammation as well.
Just because the ESR and CRP levels are "within normal limits" that doesn't mean they are YOUR normal limits. Over a large population of thousands and thousands of nominally healthy people, the level for the ESR was found to be between 1 and about 35 or so. The level at which they get edgy and look for something to be wrong is over 40. It isn't rocket science to see that if your normal had been 35, an increase to 40 isn't much - but if your normal was 4 then an increase to 40 is quite a lot more. Your 26 may have been in the second version. Both I and Nefret on this forum have levels that are stubbornly 4 or even lower. Mine has reached the dizzy heights of 7 once. We both have quite resistant PMR symptoms and have done so for rather longer than 3 years!
The medical literature says that about 25% of patients are fortunate enough to be able to reduce their pred to zero in under 2 years - they are, however, more likely than others to have a relapse later. Another 25% will need to be on pred for in excess of 6 years, on average about 10 years and often remain on a low dose for life. The remaining half take between 2 and 6 years to be in remission and not need pred.
The pred did not cure the PMR - that is just the name for the symptoms (many painful muscles) which are caused by an underlying autoimmune disease which causes your body's immune system not to recognise "you" and makes it attacks various tissues in your body. This causes inflammation and swelling and that leads to pain and stiffness. The pred allows you to "manage" this and lead a reasonably normal life - not necessarily what you might feel is normal because you have to assist in that management and adjust your lifestyle too so you don't overdo things and make the muscles sore. One thing you probably do notice is that it takes longer to recover from overdoing it when you have PMR. All the time the autoimmune disease is still there, it hasn't changed much but the pred stops most of its effects. There are many autoimmune diseases and the symptoms of many of them are very similar in end effect to PMR, sore muscles, fatigue etc etc. Unlike many of them, however, PMR does often go into remission, it stops being active - and when that happens you can reduce the pred and with luck stop taking it altogether.
You start on a dose that is enough to deal with most of the symptoms in most patients - some may need a bit more and may not show the sort of dramatic response that I did within 6 hours, some might have been able to start on a lower dose but why mess about starting on a low dose and going up, so they start with a moderate dose and then reduce it slowly to find the lowest dose that controls your symptoms. It isn't supposed to be a "reduce steadily until you are at zero". Below 10mg/day you should never reduce more than 1mg at a time and you need to allow a few weeks to make sure the symptoms are being controlled by the new dose: the big experts recommend the 10% rule and, in fact, by 5mg you should be on 1/2mg reductions. Otherwise you run the risk of missing the right dose for YOU - not MrsX round the corner, not MrY two streets away - YOU! And 1/2 a mg can be the difference between being OK and not.
Another point is that 5mg is a really sticking point for many - MrsO's specialist wanted her to remain 5mg for more than 6 months before trying another reduction. We suspect this may be because at 5mg you are back to the sort of level of steroid your body would normally produce for itself in the adrenals. Whilst you are on higher doses they don't need to do anything as they are told by a very complicated feedback system that there is enough floating around in the blood and they take a holiday. Once they have to do some work they seem to take a long time to wake up (a bit like us after a holiday!) and allowing them to get the idea slowly seems to help with avoiding bad experiences during the reduction - like a staged return to work after being ill. The exact level at which this happens varies - some people may get to a sticking point at a higher dose. And as long as the underlying autoimmune disease is active you will need a bit of pred. That may be 7mg, or 5mg or for some lucky people as low as 3mg.
The most common cause of a flare is reducing the pred too far or too fast (or both) and I would say that is what has happened to you. The autoimmune bit isn't in remission and you still need something above 3mg/day to be comfortable. You didn't tell us how fast you reduced from 6mg or in what steps - but you very obviously didn't have 6 months at 5mg between August and now. If 5mg does the trick - and it may not straight away having let the inflammation get going again - stick there for at least a few months. Anything below 7mg or so is a low dose, no higher than the amount you usually have circulating. The side-effects are caused by EXCESS steroid in the body so below that sort of dose most doctors don't panic about getting you off steroids. Anyway - what is the point of being off steroids if you can't function? So even if it needs 10mg for a week or two to get the pain under control, you will be able to drop back to 6mg quickly where you were fine before and then try 5mg and see if it works OK. But then I'd wait a fair bit before trying again.
Don't let the GP bully you into reducing - you know your pain and limitations at any dose. You can't expect to be as you were pre-PMR but you should be able to do most things as you were during the higher doses. Your GP can't feel your body saying hang on there a bit - it doesn't mean you won't get lower, it just means not yet.
Good luck and tell us how it goes,
Eileen
Dalzell
Posted
Thank you
carolk
Posted
Faygirl
Posted
I would like to thank the contributors of this patient forum. Mrs O, EileenH and others. I have followed you excellent advice and common sense approach over the years. Your work has sustained me when professional support has fallen short. Keep up the good work
MrsO-UK_Surrey
Posted
Ah, thank you for such lovely comments - I feel especially humble being paired with our EileenH who provides such a wealth of advice from her vast library of research information.
Now perhaps your consultant would like to meet me - I was on steroids for 5.5 years and suffered from undiagnosed PMR for a year before that. For her to say that you "have been on steroids for long enough" is not really a personal approach (unless you have other health reasons she is taking into account, of course) - everyone's journey is different from both the point of view of their symptoms and their response to steroids.
As you describe being "in quite a bit of pain", then you might simply need to return back up to the dose at which you last felt comfortable for a little bit longer and see whether your ESR and CRP then return to normal, although I note that you say they are "not significantly raised" (it might help to know what they are perhaps?)
I haven't got any personal experience of MTX although I do know several people who have tried it in an endevour to reduce their steroids more easily - not quite sure that worked for the majority of the people I know, but again everyone is different and I am aware of at least one person who received success with it. It's very much a personal decision, but I have to say I'm glad I didn't have the choice put in front of me!
As for pain in the chest muscles, yes I do remember having that at one stage of my illness but what that was all about I have no idea, except that they are muscles, and the inflammation of PMR is in the muscles!
I do hope that helps but I'm sure others will be along shortly (if not already!) to offer their advice from their experience.
EileenH
Posted
Most of it has already been said in my others posts this week above and on the other current threads - in total, some three quarters of patients take in excess of 3 years to get off pred. You are obviously one of them - and one thing to add is that you are relatively young to have been diagnosed with PMR and younger patients tend to present atypically. Were your ESR and CRP high inititally - and as MrsO says - what is "not significantly raised" supposed to mean. They are either low or higher than they ought to be. Plus, if your personal normal ESR is like mine and around 5, 15 is raised. End of that story.
It so happens that I read in some summary papers yesterday (German ones) about dealing with PMR/GCA that the fact the ESR and CRP are in the normal range does NOT mean the disease is inactive - so even the expert rheumatologists think that, it isn't just my logical scientist mind making the concept up! If that is the case - and since you still have some pain this is the case for you you need something. Mind you - this same German expert also said that it was possible to get patients off pred in 6 months but such patients were then likely to have at least one and usually 2 relapses needing to start from scratch on the dose and, in the end, took more pred than patients who remained on a much lower dose for a longer time. Apparently it didn't occur to him that maybe he'd pushed the reduction stakes a bit hard and slower might well be better! This document was published in about 2006 so isn't totally up-to-date but is from the days of publications that most rheumatologists seem to be working on. There has been a lot published in the last 3 years.
I live in northern Italy and the local consultants here reckon on a good 4 years on average for patients to get off pred. I have been on pred for over 3 years and for most of the last year on well above 10mg. Noone is concerned about getting me off pred - I'd have been totally unable to do anything if they had. And that is despite other concerns which it is difficult to decide was it the PMR or was it the pred. The senior rheumatology consultant is totally against the idea of methotrexate in PMR/GCA - on the basis of the currently available studies it hasn't shown enough proven effect. Basically, it is being used as a "steroid sparing" drug meaning it changes the way pred is metabolised by the body so you need a slightly lower dose. It has no demonstrable effect on the PMR itself. Even the experts in the UK who were supporting it have changed their approach to it, the top guy actually having his name as an author on a summary document saying it is of very limited use.
Although personally I am against the concept of using it - in fairness it isn't as bad as it sometimes sounds as we are given a much lower dose than the ones that give rise to the worst side effects. It has been used in RA for a very long time and for many patients has been a life-saver. But even in RA the doses are enough to cause many patients a lot of distress with the nausea and feeling as if they have flu. Some people just don't tolerate it. In RA you know after about 6 months if it is going to help - in PMR there is no noticeable reduction in the pred dose for at least a year - that's a long time to take a drug that makes you feel rotten for no reward. I still believe that the patients with PMR that it helps probably had RA - LORA (late onset RA) can often be found with no raised blood markers and with very little of the joint pain/damage that is a diagnostic factor for RA compared to PMR. That said - I have joint pain (in the tendons) if I reduce my pred too far.
In addition, the main use for MTX along with pred is for patients on a high dose that they can't get down or for patients who have a lot of other illnesses which are causing concern and which are adversely affected by pred like high blood pressure and diabetes and a load of other things. 6mg isn't a high dose - most doctors accept it as what is called a "physiological dose", that means around the amount the body secretes normally to keep your body working properly. In fact - yesterday's reading turned up an article (again German) where they suggested that it is a degree of adrenal insufficiency that actually is the real cause of PMR in some patients. Not that it can be proven, just like the autoimmune idea can't be proved, just suspected.
It's personal choice - together with how stroppy your consultant gets I suppose. Many doctors still cope poorly with the "expert patient" - i.e. the ones who do their homework and know a bit about their disease. In the final analysis it has to be a decision with which you are comfortable - or your doctor has failed you. One approach, of course, is to discuss it with the doctor and agree to try it and see how you get on. You may be one of the people for whom MTX works without making you feel awful for half the week as well as still having PMR symptoms - and that's a bit pointless too. In chronic illness where there is no option for cure, it is all about Quality Of Life and achieving a balance between the problems associated with the drug therapy and how you feel and are able to carry on your life. Especially (dare I say it) for the younger patients who are looking at possibly having to work or a VERY long time watching out for PMR to raise its head again. So if it doesn't make you feel worse you have won there - and if it does you can say, no, this isn't for me, I need to live my life too.
Good luck when you see your doc - and do tell us how you get on,
Eileen
Dalzell
Posted
Dalzell here
I would just like to thank everyone again for the advice - I can't believe that total strangers take so much time and trouble to help us with our problems - but thank goodness you have.
I too have to supplement the pred - I take paracetamol at bedtime which makes a difference when getting up in the morning - I guess it might have something to do with Eileen's point about not allowing the pain levels to rise. I have also taken Ibuprofen for which the doctor told me take with Omeprazole to protect the stomach. I was worried about long term use of Ibuprofen so a friend told me about Tumeric which I am trying at the moment therefore I am avoiding the Ibuprofen as I read on the Internet that Tumeric can make Omeprazole ineffective I asked my GP but he said he knew nothing about herbal remedies.
To Faygirl I too feel my consultant thinks I have been on pred long enough - she thinks I have osteoarthritis, before PMR I did have the odd twinge in the knees after putting stress on them but nothing like the pains from PMR. After all the good advice I'm staying on 3mg - I think 5 would be better but I go see her soon so I can mange until then. I'm 59 and was first diagnosed when I was 56. I work three and half days a week would love to be able to work up retirement age of 60 if I have to lose the pred I can't see how I can do that. So much of what you are all telling me makes so much sense - a huge thank you once again.
carolk
Posted
EileenH
Posted
That is the whole point of a support group - strangers helping other people with the same problem. To some extent it is the transfer of gifts from one part of our life to another - you may lose one part of your life either temporarily or permanently but you will always find a replacement.
I would not be taking ibuprofen regularly alongside pred - omeprazole or not. Corticosteroids and NSAIDs (non-steroidal antiinflammatory drugs) are not good bedfellows. Each on their own is capable of causing damage to the lining of the stomach, possibly leading to bleeding, and together the risk is much higher. It is one of the standard warnings and I'm not impressed a doctor feels they are knowledgeable enough to ignore it. Using them for the occasional headache is one thing, regular use another. If you need to take warfarin - absolutely NOT on a regular basis under any circumstances! One lady on the other forum took ibuprofen on its own for 3 (three) days and had to be admitted to hospital with coffee grounds vomiting - due to a gastric bleed from the ibuprofen. Even taking paracetamol at the recommended dose on a constant basis can cause liver problems in some people.
I had knee pain before PMR - like the hand pain that had been put down to osteoarthritis (with no real evidence) by a rheumatologist but was actually tendonitis, it went after starting on pred and there is no evidence that any of my doctors here have seen to suggest osteoarthritis. It has been documented as part of PMR - tendonitis and synovitis - although some docs will try to deny that fact.
I would prefer to take 5mg of pred than 3mg pred plus painkillers. Five mg is still a very low dose. If you take too little pred to deal with the symptoms you have the worst of both worlds: you have the side-effects of the pred with no real benefit PLUS the risk of side effects with the painkillers, especially with NSAIDs (ibuprofen, aspirin etc). You can help early morning stiffness by having an electric blanket which you switch on BEFORE getting up so your muscles warm up before getting out of bed. A warm shower also helps (a bath is even better except you have to be able to get out again ;-) ). And if you can get away without taking omeprazole do so - it interferes with calcium absorption and can lead to osteoporosis without anything else being involved. It also can cause muscle aches which are similar to the PMR ones. Bio-yoghurt is a proven way of avoiding an upset stomach from the medications and many of us use only that - ask MrsO! She'll also provide a list of anti-inflammatory foods for you.
If you are 59 it can't be that long until you are 60 - I would be sticking to my guns to have a decent pred dose until you retire. Then I would renegotiate things. It's a different matter playing with your medications when you don't have to get up and go out to work in the morning. Not that I would wish sitting at home unable to do anything in retirement on anyone! But what you do for a living is an important factor - sitting at a desk is one thing, physical activity is another. If a doctor has never done that sort of work they can be extremely insensitive.
Eileen
MrsO-UK_Surrey
Posted
One more little bit of advice for everyone: It is important to get Vit D levels checked as a deficiency can cause pain that might be considered to be PMR pain whereas it could simply be caused by low Vit D levels. We haven't exactly had much sunshine during our recent summer to replenish our stores ready for the winter months.
Dalzell
Posted
Thank you once again for your thoughts.
Faygirl
Posted
Thank you for your time and effort with your informative and detailed replies. My ESR 19 And CRP 9 when last checked in September. I had blood taken yesterday at the clinic so awaiting the results. Ever since I reduced my steroids below 10. I have experienced pain made worse by any minor activity. I have always backed up my steroids in the morning with cocodamol 10 /500mgs. This has allowed me to keep going on the lower dose. I have lansoprasole 30 mgs daily as I did develop gastritis due to the steroids. However I think now I could be doing with having this dose reduced as it has remained unchanged for over three years. I did have naproxen NSAID prescribed at the beginning of the year for pain but this caused high blood pressure and fluid retention, all of which settled when I discontinued the medication.
I feel there is no real reason to change to methotrexate. I have no other health related issues other than the worry about osteoporosis. I have modified my diet to include vit D and calcium whilst I cannot undertake any high impact exercise I do try to walk as much as possible and especially climb stairs (even if I do struggle). This exercise is good for balance and strength in osteoporosis prevention.
Like Dalzell I do work but recently cut back to part time. I think it is good for me and it takes my mind off PMR.Fortunately, it is desk work or i could not manage.I think your advice about the quality of life is true . I will need to give some serious thought to increasing the steroids once more!
It is so good to have people who understand. Mrs O I would be grateful if you could point me in the direction of the anti inflammatory foods lists please.
Thank you all again
MrsO-UK_Surrey
Posted
Yes, reducing below 10mgs has proved to be a bit of a stumbling block with some people, and below 5mgs can be even more more difficult. Have you tried reducing in 0.5mg decrements? If you do increase back up then that you may find more success with the smaller drop - it seems to trick the body into not noticing the reduction and easier to spot which dose isn't quite holding the inflammation at bay.
Anti-inflammatory foods I stuck to were oily fish several times a week (sardines with bones - good for our bones!), mackerel, salmon, trout), beetroot, avocado, garlic, turmeric, ginger. I included plenty of diuretic foods such as asparagus, fennel and melon to try and reduce the fluid retention side effect. I eat loads of fresh veggies and fruits, organic where possible to avoid the pesticides (too costly for some I do understand). I cut out coffee and had as little sugar as possible as these stress the adrenal glands which are already suppressed by the steroids. I reduced carbs such as bread and white potatoes (you can substitute with sweet potatoes) as these turn to sugar in our bodies and could add to the risk of steroid-induced diabetes. A dietician gave a talk at our recent support group meeting and she advised against Boswellia, Liquorice Root extract, Willow Bark, Cats Claw and St Johns Wort because of potential drug interactions. In fact it is wise to check everything with the pharmacist where supplements are concerned. A few drops of lemon juice squeezed into warm water before meals can help to avoid/relieve gastric problems - in fact, for years my first drink of the day has been a glass of lemon juice in warm water. I have Manuka honey every day - good for our immune systems, for gastric problems and has a host of other benefits. I've already mentioned live yoghurt in a previous post.
Like you, I tried to walk as much as possible (as much as pain allowed) even if I had to sit on a wall half way.
Good luck with your blood test results tomorrow - it will be interesting to hear what they are.
EileenH
Posted
As well as knowing your blood results I'd like to know what your reduction programme has been. How big have the drops been? I've had a great deal of difficulty getting below about 10mg - and that is not uncommon. There is a sticking point at about 10mg and then again at about 5mg. The 10mg level is thought by some experts to be because that is where you get back to the physiological amounts and the 5mg point is possibly because that is where your adrenals HAVE to do something and produce cortisol. Then, if you have any sort of stress - even a cold - you are far more sensitive and the PMR has a wobble.
I managed to get to 7.5mg before I had problems the first time. Since then going below 9mg has been the sticking point even going at the rate of 1/2mg at a time. Some people find that taking about 7 weeks to reduce by 1/2 or 1mg works for them. To do that you reduce to the new dose on one day the first week. The second week you take the new dose on 2 days with a day or 2 in between - and continue to reduce like that until you get to all 7 days on the new dose. Then you start all over for the next step. It sounds slow - but doing it like that and succeeding without pain is better then trying a bigger jump that fails after a couple of weeks and you have to go back to where you were.
Eileen