I'm still a little unsure how steroids actually work on PMR and I'm sure I read something on this site which made it a lot clearer what was happening in my body and how steroids help this condition. Can someone tell me ( Simply please! ) as I'm struggling to find anything on the web that explains it all.
Thanks.
PMR and GCA are almost certainly related conditions and are forms of vasculitis - inflamed blood vessels. They are not the disease itself, the inflammation is caused by an underlying autoimmune disorder. At some point something triggers the immune system to go haywire so that it is unable to recognise your body as "self" and starts to attack the tissues in the body as if they were foreign. This causes damage to the cells and inflammation.
This inflammation makes the walls of the blood vessels swell up, it isn't quite clear how in PMR but is probably in the microcirculation, the very small blood vessels. In GCA it leads to the formation of giant cells in the walls of the larger arteries and if there are too many the diameter of the blood vessel is narrowed, reducing the blood flow. If the theory about the microcirculation is right for PMR it is much the same - and the blood flow to the muscles is restricted. This means the muscles get inadequate supplies of oxygen and nutrients, especially when you are exercising when they would need more. The blood flow is also not enough to clear away the waste products of exercise - and you get sore muscles, the dreaded lactate problem for athletes.
In GCA the inflammation can affect any artery with an elastic layer to its wall - and that includes the aorta and others in the chest as well as a lot of arteries in the head area. Amongst them are smaller arteries which take the blood supply to the optic nerve which takes nerve signals from the retina in the eye to the brain which then "interprets" the signals to make an image of what we are "seeing". If these smaller arteries are swollen with the giant cells then the blood flow can be stopped altogether - just like in a stroke or a heart attack. This means the optic nerve is starved of oxygen - and nerve cells start to die off. If the blood supply is stopped for too long, too many cells die off and the nerve itself is irreparably damaged, the result is the patient loses some or all of their vision. If one eye goes, it is not unusual for the other to go soon after even with high dose pred - although it isn't always the case as Dorsetlady will tell you. But if you have signs of GCA - you need speedy and aggressive treatment with high dose pred. If you don't, you run the risk of being blind. No side efect of pred is as bad as that. About 1 in 6 patients who have PMR develop GCA at some later point. About half of patients with GCA develop PMR - but you can have GCA without PMR symptoms.
Prednisolone is a powerful anti-inflammatory drug and reduces the inflammation that is causing the trouble. It doesn't cure either PMR or GCA but it does relieve the inflammation to allow good blood flow again. As long as the autoimmune part of the disease is active, every early morning a new batch of the inflammatory substances, called cytokines, are shed in the body so every day you need some pred to deal with the new delivery and stop them causing damage to the tissues. Eventually the autoimmune disorder may burn out and top US experts claimed some years ago that in about a quarter of patients this happens within a couple of years, in about half it takes up to 4 to 6 years and in the other quarter it can take longer or may not happen at all. This does fit quite well with what I have seen on the forums over the last 7 years. In the meantime - the pred manages the inflammation, reducing the symptoms so that you can have a fairly good quality of life as long as you adjust your lifestyle a bit. Some people don't even seem to have to do that - everyone is different in how they experience PMR/GCA and how they respond to pred.
You start with a dose that is higher than the doctors expect you to need to get the symptoms under control and then reduce it to the lowest dose that gives the same result as that starting dose did - that is always your yardstick: do I feel as well/do I have as little pain as I did then? If you reduce the dose in too big steps you may get something called steroid reduction rheumatism - very like the PMR you are taking it for. If you reduce too far you will be below that magic dose you are looking for and the inflammation won't be contained so you will have a flare in symptoms. So you should reduce in small steps and carefully, not too fast. It does seem that going slowly is the best guarantee of getting off pred.
A flare is just a return of those original symptoms, no more, no less. It can happen because you have reduced the dose too far with the underlying disease activity being stable or it can happen while you are on a stable dose but the disease activity increases for some reason. Sometimes that happens if you are under stress or have an infection, sometimes you don't know why. It appears as if the activity of the underlying autoimmune disorder cycles, it waxes and wanes, and when it is in a waning period you may be able to reduce to quite a low dose but then it speeds up again - back come symptoms.
There are several people on the forums who have managed to get off pred but within a short time the symptoms reappeared. There are others who got off pred and were OK for several years - and then it reappeared out of the blue. One lady had GCA originally and got off pred in 2 years. Four years later she has just been diagnosed with PMR and is back on a much lower dose of pred. So you can't assume that once you get off pred you are "cured" - you are in remission and it might come back. Some of the people who have had PMR twice say they realise they had stopped looking after themselves so well and had had unnecessary stress - back it came. I don't think I know of anyone who has had GCA twice - but there may be. The Mayo Clinic and Johns Hopkins in the USA both talk about cure for GCA, they don't for PMR.
Does this answer you question? If there is anything you don't understand or you think I have missed out, just ask and I'll try again.
Thank you so much. Yes this has clarified a lot of points for me - I have printed it out so I don't forget what I have read this time... another drawback of pred - memory loss!
Cheers PMRpro!
I seem to have 2 personas on this forum! Katie42 and Kezzybabes. Very odd!
Thank you so much. Yes this has clarified a lot of points for me - I have printed it out so I don't forget what I have read this time... another drawback of pred - memory loss!
Cheers PMRpro!
I seem to have 2 personas on this forum! Katie42 and Kezzybabes. Very odd!
Thank you an excellent well written easy to understand piece of writing thank you
Very helpful explanation here. Just a query, I was started on 40mg prednisolone 3 weeks ago due to GCA symptoms. After blood test showed slight elevation, increased to 60mg. After 2nd blood test showed a return to normal, reduced to 55mg. (This all within a week). I had a MRI at the 2 week mark, which showed no abnormalities. So Dr has reduced pred to 50mg as of yesterday. I still have pain in side of face, eyes, jaw and side of head as well as numbness and a creepy crawling feeling and I am constantly taking panadeine forte and know it when it's running out. From your description above about pred controlling symptoms, shouldn't I have some relief for the pain from the pred. or does it take a while for the pred. to get into the system. I am wondering if Dr doesn't think it can be GCA.
To my knowledge and MRI doesn't necessarily show much - if it did, it would be used far more.
Pred "gets into your system" in under 2 hours and starts to work immediately. You are unlikely to get 100% relief immediately though - but what it should feel like I really don't know as I've never really had GCA affecting my head. On the other hand - most people I know with GCA say that the only thing that touched their (presumably) GCA pain was enough pred and ordinary pain killers did nothing.
Maybe you should repost this as a new thread - more people will see it as here it is likely to only be those of us who are following this discussion who do.
But it is the symptoms that should always be king in GCA - just because the TAB is negative and an MRI shows nothing DOES NOT mean it isn't GCA. Or at least, that is what I have been told by rheumatologists and have read in the medical literature.
Thanks. This was really helpful. I’m only on speed 6 weeks. My GP is away for a month & I’m having to deal with a younger doctor. Unlike the GP who said we’d try to find an acceptable level of steroid, the younger doctor is very very anti steroid & has insisted that we must reduce to zero.
He dropped my daily dose from 15mg to 12-5mg. I began to feel pains in my back again & began to feel tired again. So after a week I started taking 15mg again.
I thought I’d let him know but he was very unhappy that I’d upped the dose again & said that he’d review it again in 2 weeks.
Hopefully my GP will be back soon & I could have a conversation with him about where I’m going.
The younger doctor may well be anti-steroids but he needs to learn that there is no alternative in the UK for PMR/GCA. Your first GP has the right idea - and to be honest, I'd be requesting a different GP or that you be left on the dose your original GP started you on until he is back.
By the way - had you noticed this post is 8 years old? I'm still here and have followed every post for years so I still get notifications but many others will have left in the meantime!
I did notice the age of the thread after I’d commented.
I appreciate you replying.
Yes, my plan is to talk to my GP who’s the senior GP in the practice anyway.
And you repeat yourself!!
No, that's the system, sometimes you don't think your reply has been accepted, so you submit it again, only to find it was loitering about in the ether hiding, just to be blooming awkward.
As always PMRpro has given a comprehensive and easily understood reply.
Thank you so much PMRpro for this, it is so helpful and you always make things so easy to understand. I shall also have this printed, it will be good to have it to hand and will probably take it with me when I see my GP next week. He is concerned ( as I am ) about my high blood pressure particularly since I had a brain haemmorrhage (?!) 7 years ago and undergoing lots of stress with my extremely difficult ( always has been!) 97 year old mother. Started on preds exactly a year ago (20mg) got down to 11mg a couple of months ago but because of the stress and increasing symptoms have upped to 12mg.
Hasn't your GP put you on medication for the BP? It isn't contraindicated so there is no reason why not - I have been for over 4 years because of atrial fibrillation.
Disclaimer here - many medically trained people may poo-poo the description. i have left out medical stuff because it isn't for medical people - they can get their own from the textbooks. And to be honest - they don't look! But even if they did, as far as I know, they wouldn't find a mechanism described! It is awfully frustrating sometimes...
Yes, he has. Was on Amlodipine (?!) and something else, but was sent to have an ECG and a cadiologist looked at the results, and recomended Bisoprolol Fumarate and Candesartan cilexetil ( now a double dose 16 mg), said my heart was having to pump too hard. My BP was quite raised before being put on pred and being diagnosed with PMR last Oct. but probably a bit like you, had the symptoms for a long time before I realised, through a friend who has it, that it might be PMR. My GP has mentioned twice that he is doubtful that I have it! So, do wonder whether in view of your brilliant explanation, my BP was already raised because of the inflammation in my blood vessels? There is no doubt in my mind too, that, the stress with my mother is another factor, which made it rocket just before seeing her a couple of weeks ago. Am trying to be determined not to let her mess my health up even more! Easier said than done! Having a fairly "down" day, but always feel less grim by reading the posts and your very helpful comments. Thank you so much.
Yes - perfect logic. Doesn't work for everyone but there are several people whose BP fell after being put onto enough pred.
I'm on Bisoprolol and Losartan - obviously a similar pair - but on very low doses. Funny that - GPs seem very keen on amlodipine and it seems horrible. I was on an ACE inhibitor (I think) first and I turned scarlet and VERY itchy so that is now flagged large as a no-no on my notes. But the second option was this - as directed by a cardiologist. Which I suspect says something.
Onwards and upwards
As you say....onwards and upwards! Will see what my GP says next week. Have also gone up to 13 mg pred today as I realised, again, what you were saying, that I am tolerating pain and stiffness that maybe I shouldn't in view of, maybe, inflammation being more active than it should be, therefore not a good scenario. You just get to putting up with things, don't you? I feel, apart from you lovely people, I am stumbling along in the dark with this!
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