A post made by another patient prompted me to do a bit of reading and almost immediately I stumbled upon this:
evidence.nihr.ac.uk/alert/l...
They do state that to lower the risks one should do all the usual (don't smoke, eat right, exercise) but I must say these findings are somewhat alarming.
just read it and I quite agree, it is very alarming. I was hoping to live another 20 years or so!
Thank you, I think!!! for this and as you say it is a report to make people in our situation think about things. At the moment there is no other treatment, available to us, for our various ailments so there is very little we can do regarding our medication requirements. What we can do is to understand that it even more important to ensure that we take all the other, generally well known, steps to help minimise the extra risks to our heart and cardiovascular systems.
My thoughts on this study... Correlation does not mean causation ... There are many holes in the study. For example there was no "control" group to compare. If they had a group of subject approximately same age that had used prednisone and did NOT have inflammatory illness then I would trust the result of the study. As it stands, the inflammation itself and/or lack of usual activity ( change in lifestyle because of illness) can be the real reason for increased risk of heart and cardiovascular system disease. Reduced activity correlates to higher doses for example. Longer term use of low dose steroids also coincides with prolong inflammation, so who is to say what is the real cause of the problem?
I did make note of the statement that the study seems to show that the anti-inflammatory effects we've historically believed help protect the heart are negated by effects of the steroid, so it is something the researchers were surprised by. They also say more study is needed. Meanwhile, as Bcol says, it's a heads up for those of us who've no other treatment for our disease to be even more aware that we have to protect ourselves through heart-protective lifestyle.
Interesting - must lose weight!
Indeed. It gives me a bit more encouragement to carry on with my lifestyle, despite temptations to just slack off as I do appear to have some beginnings of heart disease. Which may or may not have anything to do with being on pred for so long. My own feeling is pred's effect was probably minimal, but it doesn't mean it might not have been worse had I not been a bit of a health nut most of my adult life! After all, being a health nut didn't prevent PMR in the first place. There are some things we simply cannot prevent, but we do have it in our power to live as healthily as we can.
So, turning off laptop now and getting ready to walk to the supermarket with my wheely cart.... 
Agree with pmr_nikola , study is not quite balanced as it could be... yes we all know that Pred may have an effect on blood pressure, diabetes, cholesterol and weight - which all can lead to heart issues, but so can other factors not necessarily associated to Pred. Smoking is a prime example, genetics and lack of exercise which may be due to the PMR and/or other illnesses not treated by Pred.
So, how much risk is Pred related and how much due to the underlying illnesses?
I'm sure she won't mind me mentioning, but PMRpro has made this comment in a previous post as few years ago.
I have atrial fibrillation which started about the same time as the first PMR symptoms. The cardiologist here is confident it is due to the autoimmune part of PMR having damaged the electrical cells in the heart that govern heart rate.
Agree wholeheartedly with following comment -
The researchers call on GPs to regularly monitor and help reduce cardiovascular risk for patients taking glucocorticoids, even those on low doses.
But as we all know that may not be as forthcoming as it should be.
PS - what is long term treatment?
We have to remember that the vast majority of cases of PMR and GCA [albeit sometimes longer with LVV - sorry] do go into remission on a permanent basis.
Those with LUPUS, IBD, RA and many other autoimmune diseases whilst having patches of remission, do not, it’s lifelong. .. so it’s all a matter of perspective.
Must say I was actually surprised to see PMR listed, but only because PMR is so often ignored in other discussions about auto-immune disease.
Hi DL
Although I have some issues with ectopic beats, the rest of my heart function is normal....CT & ultrasound scans, plus numerous other tests confirmed that just recently.
My heart issues began long before I was prescribed prednisolone though, and although I've felt the need to have one or two things checked out a couple of times, nothing regarding my heart health has deteriorated further since I began taking steroids.
I too have read the article and feel that although you can't deny its findings, like yourself, I definitely think that it's not just as simple as saying 'Steroids cause heart issues '.
Yes, they can make you hungry so you eat more and then put on a lot of weight. Being overweight can increase your chances of having some kind of cardiac event. However, it's possible to minimise (if not prevent) any weight gain by eating sensibly..ie. a low carb (not no carb) diet.
Yes, they can increase your risk of developing diabetes, particularly if you're eating lots of fats and sugars. However, managing your weight through a healthy diet can minimise (if not prevent) steroid related diabetes, which in turn then reduces the risk of being more likely to experience heart problems.
Smoking & drinking are both known to be strong contributory factors for developing heart problems, as is leading a sedentary life.
My mother is a perfect example of that......having smoked over 40 cigarettes a day for much of her adult life, she collapsed & died with a massive heart attack at just 48yrs of age. The autopsy showed severe coronary occlusion & coronary atheroma..... thought to have been caused mainly from the cigarette toxins.
So, we have to put this study into perspective and realise that many other factors will probably have been also present that would have contributed to the development of some of those heart conditions. It doesn't seem reasonable to me, to say that steroids alone cause heart problems.
There's so much we can do ourselves to help prevent or minimise some of the potentially more serious side effects, and people need to know this in order to become less fearful of steroids. We definitely need to respect them but I personally feel we shouldn't fear them.
Sorry...I'm waffling on now! 😄
No you’re not waffling 😊 and I totally agree with your penultimate sentence…and with rest of your post.
It seems all too easy to find fault with Pred, but one wonders if the authors of such articles/studies would be so quick to do that if they actually required them to save/preserve their sight and/or have a decent QOL.. as I said it all a matter of perspective.
I think you are being unduly harsh. The authors acknowledged the fact that long term pred is the only viable treastment for several conditions. Personally I would rather know about the possible negative effects of pred than be kept in the dark. Knowing about the possibility of osteoporosis and diabetes certainly encouraged me to behave in certain ways I might not have been so diligent about if I didn't know.
Not saying we should be kept in the dark.
Years ago I read that everything we could do to keep our brain healthy also was what we should do anyway to keep our heart healthy.
👍👍👍
Rock and a hard place me thinks. As someone with LVV if gone untreated I'm at risk of a heart attack and stroke which is what they are saying is a side effect.
I fear this is a dangerous article for those that will really need high doses if it is saying give the minimum.
Lucky most medics don't have time to read every publication is my thought as I am very grateful for the pred and how it has changed my life.
I agree, but we always knew pred had some concerning side effects and took it anyway because, hey, what choice did we have? A lot of meds have bad side effects, including others gleefully prescribed to PMR patients. I knew about side effects like bone thinning, diabetes and weight gain and have worked very hard to mitigate those effects. A side effect of those efforts has no doubt also been protection of my heart, as I exercise and eat healthy food.
Without pred, I would probably be slumped in a chair all day long. That's not so good for your heart either. I agree with what has been said already. You need to be sure that it is due to the treatment and not an artefact of the illness. So what does the alternative look like? It would be more valid if compared against people with auto immune illness who are not treated and that raises medical ethics issues, so that won't happen.
Correction: it "shouldn't" happen, but I am mindful that it take some of us long enough to get a diagnosis and access to treatment, but that's a whole other story.
It’s the regular monitoring that isn’t done that is concerning. I have been on pred for over two years now (GCA so high doses). After a TIA linked to Afib a year ago I was put on the associated meds and got on with life. I have only just followed up due to increasing fatigue which I had linked to adrenal insufficiency (had a Syncathen test). Bloods done in June showed high levels of BNP indicating chronic heart failure. Now on a waiting list to see a cardiologist on the NHS after paying privately for echocardiogram and ECG monitoring. I feel it’s all linked but no one medically is saying that. It’s like a nightmare with one thing leading to another.
I've been waiting over two years for referral to a cardiologist to materialise. When I have an episode where I suddenly have to lie down with shortness of breath, pain in what seems like my stomach but quite high, and a severe toothache, all happening at once, all transitory, then I wish I knew why and if there is anything to be done, or one day will I be finished off?
Given that PMR affects the muscles and GCA the blood vessels it's definitely a rock and a hard place. My cardiologist discharged me after observing my left ventricle valve had stabilised and improved slightly. I hope she was right. Given that I was super fit before with no heart issues I think I started with an advantage. Slow and steady increase in turbo work should gradually improve it especially now I'm down to 3mg. Not sure if full physiological recovery is possible after the damage but worth a shot. It looks like the valve was damaged by pred. but it could equally be the PMR and GCA. Who knows?
Well, exactly. When I was in my 20s a doctor said I had a "functional" heart murmur. No one else ever mentioned it until my current GP, more than 40 years later, and me having mentioned odd heart sensations over the years to the GP who cared for our family for nearly 40 years. These had become worse in the last few years and especially during the months after I'd had Moderna covid vax (avoiding that one from now on) . Could be that many medications (as well as many pathogens) tend to target an already weakened part of the body.
I'll need to read the original paper, but to put things in context, the article says:
The risk of serious cardiovascular problems was:
1 in 71 for those not taking steroids that year (the control group, 1.4%);
1 in 35 for those taking 5mg/day or less for a whole year (2x 1.4%);
1 in 11 for those taking 25mg/day or more for a whole year (8.9%).
The highest (1 in 11) risk was said to be "similar to those with diabetes", which is a common disease. So the same advice applies: don't smoke, eat a healthy diet, take gentle exercise, and keep your weight down. That will minimise your risk of of being the '1 in'.
Some of the diseases listed are associated with an increased risk of some cardiac conditions anyway. My atrial fibrillation is entirely due to the autoimmune part of PMR - they both started at the same time at a relatively young age. I asked Prof Mackie if there was a higher risk of a/f along with PMR and she didn't know. Shortly afterwards a paper was published that had identified an increased risk. Those who have more serious RA or PMR or whatever are more likely to need more pred - and it is probably next to impossible to sort out the confounders.
I was wondering how they determined that the risk increased with low dose prednisone since they all had inflammatory conditions to start with. So how do they decipher whether the increased risk was from the steroids or from the duration of having an inflammatory disease and the stress it causes your body and organs. Just curious.
I read the other paper a while ago - and that was exactly what they queried. You have to see it from more than one perspective - and all too often they don't.
There's a link to the full article, which I've just skimmed through.
journals.plos.org/plosmedic...
Here's one small section:
"In 87,794 adults with immune-mediated inflammatory diseases and no prior CVD (5-year median follow-up), we studied the risk of 6 common CVDs associated with the steroid dose prescribed, quantified either as current or as cumulative dose.
We found strong dose-dependent risks of all CVDs, including myocardial infarction, heart failure, atrial fibrillation, and cerebrovascular disease, in patients diagnosed with the 6 inflammatory diseases studied.
After 1 year, the overall absolute risk of CVD doubled for individuals using less than 5 mg prednisolone per day and was 6 times higher for users of 25 mg or greater.
Many individuals had known modifiable cardiovascular risk factors, including current smoking (24%), obesity (25%), or hypertension (25%)."
Thank you for the info! I love learning new things, I just tend to over analyze 😂
I just hope those doctors and rheumatologists who are already anti prednisolone and rush patients to get off them don’t read this article. It’s hard enough convincing them to prescribe enough pred to maintain QOL without giving them more ammunition to insist we reduce dose regardless of any pain we may have. 😡
Quite ...
I must be lucky because I just tell the pharmacy in the GP's practice when I need more and they provide. I am staying on the reduction plan but if I needed to take more I would just do it. Maybe they trust my judgement. Don't know and not asking them😀
There is NOTHING in the article which suggests people should stop taking pred it they need it, Only what we already know - to get to the lowest dose necessary as quickly as possible. The authors are quite clear that pred is necessary for treatment of some diseases and point out that their findings show that it is as important for doctors to guide patients regarding heart health as they already should be doing regarding bone health and diabetes.
I always have difficulty with studies that don't allow anyone to see the raw data. Not a good look, imho.
The main article was too complicated for me to understand but there are a lot of numbers....
After 4 years on Prednisolone I had a heart attack 12 months ago and was hospitalised for 8 days. An angiogram found no clogged arteries so didnt need a stent. Final diagnosis was Minoca heart attack basically meaning that although AF and raised heart enzymes indicated a heart attack it is without occluded coronary arteries and an uncertainty to what caused it. Im beginning to wonder now if there is some connection here?
Well, all I would say is that after just about 3 years of Pred, for PMR, I developed AFib and heart failure, the top two on the list. Luckily a cardioversion (re-boot) got me back to normal. Now on zero pred for a month and no dramas but my fingers remain firmly crossed.
Very informative Heron. Something else to consider while trying so hard to taper. I wonder if our cardiovascular system improves after we stop the steroids? Thanks for posting.
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