Polymyalgia steroid use.
Posted , 19 users are following.
What are the implications of not taking steroids? I have had PMR for 6 months and have just been
prescribed the usual ...prednisolone by my Rheumatologist. I am more frightened by the steroids
than by this illness. I don't want to take them. I was miracle cured by ibuprofen. I stopped taking it
and the symptoms returned. All the accounts I have read about steroids say the same. Stop taking
them and the symptoms return. Except with steroids you can't just stop as you know you must carefully reduce. Why are steroids better than ibuprofen? Does anybody anywhere
know what the implications of doing nothing are? What is the prognosis for this illness?
Am I more likely to develop GCA with or without the steroids? Much information is available about
steroid use but I can't find any information at all about non-steroid use. Before I commit to a minimum of 2 years on these pills can anybody shed light into this dark area?
2 likes, 59 replies
megan41
Posted
EileenH
Posted
Some people do react badly to the higher doses of pred, some react badly even to lower doses. One point I would make is that the pred does NOT necessarily do any damage to your bones, only about half of patients on long term prednisolone develop osteoporosis and it may well be that those who do, do so not in response to the pred but to the PPI or other medications they may be taking. I, together with several others on the forums, have the same bone density readings now after 4 or more years on pred as we did at the beginning. A dexa scan should always be done at the beginning, after up to 3 months of pred, and if there are no concerns then only extra calcium and vit D should be taken from the start. Bisphosphonates should only be used if really required, not as prevention, for several reasons.
Some of us on this and other forums were in wheelchairs BECAUSE of the PMR. It is not always a case of mind over matter - I had had PMR mildly and used other forms of therapy for 5 years before I suddenly was unable to get out of bed unaided and could only get up stairs on hands and knees. Pred allows me a decent quality of life - I don't like being as cuddly as I am by any means but it is often possible to deal with the weight gain and the elevated blood sugars by very strict dieting, I have lost a lot of weight in the last few months, still on 9mg pred. Not always, I agree, I know one lady who put on something like 100lbs just from pred, she had GCA so was on a high dose initially but at lower doses the weight started to disappear as if by magic. My weight gain was less in response to pred however - it was in the first few years when I was unable to move and exercise as I had always done before.
And the sceptical scientist in me also feels bound to point out that PMR, or at least the underlying autoimmune disease, commonly goes into remission, sometimes after a couple of years, sometimes sooner or later. There is no way of knowing whether your massage or meditation was the trigger for the remission you were lucky enough to experience. However, after having had PMR for nearly 9 years in total, I don't think my use of pred is a panic measure, it is a realistic response to the option of being an invalid and in constant pain. I must also mention for anyone else reading these posts that many patients with PMR find massage makes the symptoms worse not better - an extremely experienced and knowledgeable practitioner is essential in many cases.
I do hope your choice is as successful this time - but please don't condemn pred out of hand. For many it remains the only answer to living a relatively normal life. I and many others couldn't have continued working without it. Also, untreated PMR leaves you at a higher risk of several other nasty diseases, not least GCA (giant cell arteritis) where without pred you have a high risk of going blind, as well as a few forms of cancer and cardiovascular diseases. Rejecting pred is not a simple decision - there are a lot of factors to be considered.
Eileen
carolk
Posted
megan41
Posted
megan41
Posted
megan41
Posted
EileenH
Posted
I only posted because other people looking in this thread might feel confirmed in a belief they should not take steroids which was founded on the scary stuff. There are about 82 documented side effects of pred. Some serious, some merely annoying. Noone yet has reported having all of them, some people have very few and mild ones. We have met patients in a total and flat panic because they have been told they need to take pred. They are convinced they will immediately put on a load of weight, break bones because of osteoporosis, develop mania and so on and so on.
There are people who post aggressively saying "take no pred, you can do it with diet", there is another thread here about using Beline capsules - which claim to have only natural ingredients and be totally safe. If someone has GCA - trying diet and rejecting pred puts them at a very high risk of going blind. Beline contains a corticosteroid and 3 other heavy-duty drugs, none of which are undeclared on the label so posing a risk to someone like you who DOES have problems with pred if they were to take it.
Diet probably does help greatly - except the best diet, shown in a double blind trial to work in about half of rheumatoid arthritis patients, is a fast followed by a fairly extreme vegan diet which few people could sustain for long since even small amounts of animal protein being reintroduced cause it to fail. Pharmaceutically speaking, there has been a pilot trial in the UK using leflunomide which induced remission in 22 out of 23 patients. It too is a powerful drug - but if it works fast to induce remission it is certainly promising for patients for who cannot tolerate corticosteroids.
For the newly diagnosed patient it is desperately confusing and frightening - and a forum like this one should always offer a balanced discussion. I really am delighted you were successful in getting through your PMR. But the only way for anyone to find out for themselves what it is like taking pred is to take it and see how they get on. One thing is certain: having been in use for some 60 years in millions of patients who HAVE to take it every day to stay alive the risks and side-effects are probably better known than for many other drugs.
After all, if you read the data sheet for paracetamol or aspirin carefully you wouldn't take them either and you don't need a prescription for either of them. And I have a friend who was told by her GP to take ibuprofen for her PMR pain. After less than 3 days she was in the ER with a gastric bleed and nearly died.
I hope you don't ever need pred again - because for you it is obviously a high risk strategy. I hope for all of us the need for pred disappears because that would mean out PMR had gone. After nearly 9 years I'm not holding my breath :-(
Eileen
josey1 achingman
Posted
MrsO-UK_Surrey josey1
Posted
I'm sorry to hear that you've just been diagnosed with PMR - perhaps you haven't got a severe form of it if you are able to contemplate not taking steroids. However, from my experience and many others with PMR, Paracetamol doesn't touch the pain. Steroids are the only tried and tested medication at present that get control of the inflammation of PMR. Failure to control that inflammation can result in far more serious illnesses, not least the linked condition, Giant Cell Arteritis, which, untreated can cause loss of eyesight which is irreversible. You are at a higher risk of contracting GCA without steroids to control the inflammation, and if you do succumb you will need a much higher dose to protect your eysight - and I speak from personal experience as my PMR remained undiagnosed therefore untreated for a year.
Yes, steroids can cause side effects, but so can many other medications, including Paracetamol, and whilst some patients may experience some side effects, others don't experience any at all.
I do wish you well.
EileenH josey1
Posted
It isn't a case of "pred bad", "no pred good". The underlying autoimmune disorder is causing inflammation all over your body and that is also dangerous in the long term. Long standing inflammation, even at low grade, is associated with a range of other diseases including cancer and cardiovascular disease. As MrsO has said, untreated PMR leaves you at an increased risk of going on to develop GCA - where the option becomes take pred (at much higher doses than you need for PMR) or risk going blind. 1 in 6 patients with treated PMR go on to develop GCA - even more do so if the PMR isn't recognised and treated.
Nor is paracetamol an innocent little number despite being available OTC. Even at the recommended dose some people develop liver problems when trying to use it long term. If you drink alcohol that is even more possible.
The doctor offered pred straight away because it is currently the only option for managing the symptoms of PMR and having a relatively normal life. Some people have managed without - but all we have met so far have ended up taking the best part of a couple of years out of their normal life. If you can face that, constant pain, limited as to what you can do and constantly tired then fair enough. I had 5 years of PMR with no pred and managed fairly well: by going to a gym every morning to do an aqua aerobics class to mobilise. I could just get out of bed and get into my swimsuit and jogging trousers and take them off again at the gym. By the time I'd done the class and spent some time in the sauna I could move enough to get dressed. It wasn't out of choice, it wasn't diagnosed, and after 5 years it suddenly got really bad - I couldn't get out of bed never mind to the gym. After another 6 months of severe pain I was offered a course of pred as I had to go to the USA for a meeting - within 6 hours I could walk downstairs normally and back up again. Before I had the choice of going downstairs for food or remaining upstairs for the loo (we'd just moved to a smaller house prior to another move, 1 loo instead of 3). It wasn't nice and I would never choose to go back despite the downsides of pred.
There are 82 listed side effects of pred. No one gets all, some get none. But the side effects of untreated PMR can be as bad.
josey1 achingman
Posted
I guess I just needed some time to think and work out what PMR is., I'm kind of in shock. Just needed some time to do some research before taking medication. I was diagnosed with diabetes at the same time and I've read that the steroid raises blood sugar as well so very worried. But I think I will take the steroid after your kind advice. Thanks Josey x
MrsO-UK_Surrey josey1
Posted
EileenH josey1
Posted
As MrsO says - you will be monitored even more closely because of the diagnosis of diabetes. In the meantime though, quite a few of us have managed either to avoid gaining weight or even to lose weight by cutting processed carbs a lot (I eat almost no bread, cake, pasta, all carbs coming from veg, and I cook everything from scratch). Eating less carb means you need less medication to cope with those carbs.
Yes, adjusting to having two chronic illnesses, neither of which can be cured but can be managed by medication and lifestyle changes takes some getting your head around. But you aren't alone in that and plenty of people are here who will help with your questions.
Nefret josey1
Posted
But that was more than 13 years ago. I still have diabetes and I am still on steroids but this is very unusual and is due to other conditions deciding they liked me and wanted to stay with me.
My sugar levels have been normal for more than 2 years at present and while they do go up if I have to have more steroids (I'm on 5mg now) they do also come down rapidly as the steroid dose reduces and this has held true for me all along.
Obviously it is best to avoid the sugary cakes, biscuits and whatevers found in normal life, but you also have to be careful with carbohydrates too. Steroids may make you crave carbs and putting on weight isn't good for anyone least of all a diabetic. Equally, if you don't take the steroids you are likely to put on weight because PMR will limit your ability to take any kind of exercise, which again is just as harmful in the long run. This, plus the possible effects of long-term inflammation rampaging round the body - well, I decided on the steroids. They seemed to be the lesser of two evils and most of us develop a love/hate relationship with them.
I'm fine now, I eat pretty much normally and I can have a treat from time to time (sometimes two). One more thing - you might have to become a label-reader as I am. The amounts of sugar of different types found in everyday food is amazing and needs a close eye kept on it.
josey1 achingman
Posted
Nefret, thanks for your supportive post. When I left the docs on Wednesday I was devastated. Went in a healthy woman thinking I was just run down, came out with two deseases and no education about them. So thanks to everyone here. I'm wondering what dose of steroid the doc will start me on? I asked for a low dose but she said she wanted to start high. I'm waiting for a letter inviting me to a diabetic support group about diet ect, so think I shall feel better then.
Also became a widow 17 months ago so missing him and his support with this.
Thanks once again Nefret and I wish you well with your health you sound a very patient person :-) good luck with all
Tricia172 josey1
Posted
I found Achingman's post when I was first diagnosed with PMR just under 2 years ago and have posted earlier in the thread. I also was reluctant to take steroids and read with interest Jill's posts as she managed without taking them. She gave further advice when I posted as you will see.
I took Ibruprofen (it is an anti inflammatory rather than a pain killer like Paracetomol) and had a very supportive GP. She was concerned that not taking steriods would delay my recovery but checked with a rheumatologist, who said that it would make no difference to the length of the disease, and a mild dose should resolve in 18 months to 2 years. I was fortunate to have a mild enough dose to manage on just Ibruprofen (reading other posts and speaking to others I realise just how debilitating it can be). She also warned me to look out for GCA and to contact the practice if there were any symptoms. I eventually found that taking 400 mg of Ibruprofen liquid capsules after breakfast and supper worked best for me. Fortunately the Ibruprofen agreed with me and I never took it on an empty stomach. Had I needed stronger anti inflammatories, I may have decided to take the steroids instead. I just thought it was worth starting with the milder medication and that worked for me. After 18 months I was able to manage without it and am almost recovered.
I realise that this is not right for most people and if I had suffered the agonies I understand many people go through I would have taken the steroids. I feel I was fortunate.
I did not use a restrictive diet but cut back on sugar, processed foods and caffeine and do not drink alcohol. I actually lost weight, a symptom of PMR as is anaemia which I suffered from too. I found cranial osteopath very helpful and went every 2 weeks. I tried various supplements and found Curcumin (turmeric) the most helpful. It is worth taking Vitamin D too. I was low as are many of us, and I found a link between Vitamin D and PMR in my internet searches.
I wish you all the best in managing these difficult diseases but it is possible.
Tricia
EileenH Tricia172
Posted
When I finally worked out what it was and saw a rheumy he offered a 6 week course of pred (he didn't think it was PMR). I took my first tablets, 15mg, at 10.15 and 6 hours later got up from the computer, walked downstairs immediately (no unfolding myself first) without a thought, made a cup of tea and carried it back upstairs.
That is the difference pred can make - and the doctor was actually not entirely accurate in saying it makes no difference. The length of illness is probably the same since pred has no effect on the underlying autoimmune part but the longterm inflammation in the body increases the risk of developing cancer and cardiovascular problems. The rate of GCA in untreated PMR is higher than in patients with PMR who are on pred.
The link between vit D and PMR isn't specific and in fact there are no proper scientific studies looking at it - but low vit D is commonly found in patients with autoimmune disorders of all sorts. It isn't known whether it is cause or effect - it could be either.
And a warning about a "milder medication": one lady on another forum was told by her GP to take ibuprofen for her PMR symptoms. Three days later she was in A&E with a gastric bleed due to it. She was particularly unlucky, it doesn't happen to everyone - but even though ibuprofen is available OTC it is not sweeties either. Pred at high doses can do horrid things - it is, however, not half as scary as it is made out to be.