reducing steroids

Hi DJ and welcome!

First the figures again (just in case you haven't seen them, I never know which threads I've put them in!): about a quarter of patients are able to reduce their steroid dose to zero in about two years or less but then have a higher likelihood of relapse later, requiring steroids again. About half are on steroids for around 4 to 6 years but rarely seem to have a relapse (or they don't return to the doctor if they do) and the rest need longer term steroid treatment. So 2 years is an optimistic view but it does happen.

The concept of "careful drug management" is irrelevant here - the pred doesn't cure the disease, PMR is the name for the symptoms (medical latin for many painful muscles) of an underlying autoimmune process that causes inflammation and swelling as our immune system goes haywire and attacks us in error thinking the cells are invaders. There are many such illnesses (PMR, lupus, rheumatoid arthritis, diabetes), the symptoms depend on which cells are being attacked. Pred is used to manage the symptoms until the underlying disease goes into remission - which is the main reason for always trying to reduce the dose to the lowest possible dose that leaves you able to function. Reducing in small steps and allowing a decent gap between reductions means you don't overshoot the mark and allow a flare to get going which would then require a return to a higher dose and starting all over again. But the bottom line is: if the underlying disease is still active, the symptoms will return without pred.

There are ways of helping the pain and stiffness without steroids - but you still tend to be quite restricted although I managed to ski during the 5 years I had it relatively mildly (for some reason the action in skiing really helped the hip stiffness) the last 3 years have been increasingly difficult although there are other factors involved. You don't say if you are male or female - men tend to have a different course from women, often easier. We do tend to assume new people are women as 3 times as many women develop PMR as men!

There are other drugs which some doctors will use to reduce the steroid dose for patients with other medical problems where steroids pose risks - as is the case for you. There has been a small-scale trial with leflunomide in which 22 out of 23 patients went into remission when given this drug (Arava) which is used for rheumatoid arthritis and psoriatric arthritis. In them, it doesn't cure but slows the disease process. I don't know if going into remission on a long term basis counts as a cure - and the pilot study is relatively recent so there are no long term studies.

This is the abstract from the paper on this study:

"Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA) are related inflammatory rheumatic conditions affecting adults over the age of 50 years. Both conditions respond to initial glucocorticoid (GC) therapy. However, most patients require 12-36 months of a tapering steroid regime. Adverse events at 2 years are seen in up to 65% of patients with PMR and 86% of patients with GCA with over 50% developing serious events. There is also a high incidence of relapse in both diseases -40% within 2 years for GCA and 50% of patients with PMR at some point having a relapse. Effective steroid-sparing adjuvant therapies are urgently required especially in incomplete, poorly sustained or non-responders to glucocorticoids. In this case series, we found that Leflunomide is efficacious, with 22 out of our 23 patients exhibiting a complete or partial response. It was also steroid sparing and well tolerated. It may be a useful adjunctive agent in difficult-to-treat GCA and PMR. Prospective randomised controlled trials of Leflunomide in both GCA and PMR are now required." (Efficacy and tolerability of leflunomide in difficult-to-treat polymyalgia rheumatica and giant cell arteritis: a case series. Int J Clin Pract September 2012)

This study was done in the rheumatology department at Southend Hospital in Essex and the head there is very closely associated with the National PMR/GCA charity. Your rheumatologist may be interested if s/he hasn't seen it yet. I haven't checked how leflunomide and glaucoma are related.

My personal experience is that my eye pressures haven't been affected at all but I don't have glaucoma. Something at the back of my mind tells me someone on here has had problems and it is monitored very closely but she still takes pred. There is also someone on the other forum with eye pressure problems on pred. But both of them had GCA - and there it is a case of you're damned if you do and you're damned if you don't. Pred is the ONLY answer to GCA when it threatens the optic nerve which puts your sight at risk.

The other thing you haven't told us is where you live - don't need your address, just area - but there may be a support group near you and talking to real people is very helpful! We can also suggest the best person in your area if you have difficulty in finding someone who really understands PMR and how debilitating it is. Many doctors don't get it - we tend to look very well!

I'm sorry we sound so depressing but these are facts that can't be escaped. Do tell us how you get on this evening because it is all adding to our pool of knowledge.

Good luck,

Eileen

Hello D J

I'm so sorry to hear how much pain you are in and even more sorry that you have found it "depressing" reading various posts on here. The very nature of a forum such as this means that many of the people who post are encountering problems for which they seek answers, but do please remember that there will also be many PMR sufferers who don't ever seek answers on a forum as they are having straightforward journeys to remission within two years, sometimes within 18 months for a lucky few - you may well be one of the lucky ones.

I also have glaucoma but I took steroids for PMR and GCA for 5.5 years. I also know that steroid eye drops are given to some people for their glaucoma, so I'm sure your worries are unfounded in that direction. However, I'm sure you will be under the care of an ophthalmologist - if not, then perhaps your rheumatologist will refer you for peace of mind.

Like you with trigger finger, I also had trigger thumb for several months during the Spring of this year. Steriod injections were mentioned at the time but following a chat with my pharmacist he said both he and his brother had experienced trigger thumbs and they both recovered without treatment, reassuring me that my thumb would too. It was a difficult few weeks at first but very gradually the pain eased and the thumb eventually stopped locking.

I doubt the cortisone injection for your trigger finger was linked to your eye problem but rather more seriously your eye problem could be connected to PMR and/or GCA (a linked condition) - if so, then you very much need the steroids to control the inflammation and protect your eyesight.

It is "depressing" at first when diagnosed with this condition, but it is also depressing suffering from pain and you will feel so much better one you start the steroids and that pain is controlled.

I do hope you will find your rheumatologist helpful and reassuring - do come back and let us know how you get on.

Hi Everyone

I've got a couple of questions to ask again. I've just been to see the consultant at the hospital and she has agreed this time my inflammatory markers are up so has increased by dose to 10 mg which has made me a lot more comfortable. The questions I need to ask are about tinnitus and Plantar Fasciitis I seem to remember reading information somewhere on this forum regarding links with people with pmr and steroid use. I have had tinnitus for years and largely am able to ignore it but since increasing the steroids again I've developed a new very annoying fluttering noise - if anyone has any thoughts they would be welcome.

Thank you for all your help.

Hi Dalzell

There is at least one form of tinnitus that is due to muscle spasms and makes a fluttering noise. I had more traditional tinnitus for years until I started the pred for PMR and then it disappeared. I suspect my tinnitus was due to the PMR/borderline GCA - it is more than possible.

The mention of plantar fasciitis was possibly on the thread "New to PMR" - someone had something similar to it plus her feet felt like she was walking on cobbles. I also felt like that before treatment, like the tinnitus it disappeared eventually after being on pred for a while. If your PMR flared after being on the much lower dose it may have re-manifested in a different shape, so to speak. A lot of people find it changes over time and the few people we know who have had it more than once have found the second dose is completely different from the first - in all ways. Also pred can cause bizarre muscle effects at times!

There's nothing simple about this disease

Eileen

re fluttering just a thought is your blood pressure ok sometimes pred can raise bp and it can give you the sensation of pulsing in the ears if they are sensitve carolk

Hi all

Thanks again for the advice - bp is a little high - I've been on amlodipine most of the time I've been on pred - so maybe the sudden change back to 10 mg has had an effect. It seems to be settling a little now - I guess as Elaine says there's nothing simple about this disease - every thing was pretty much text book to begin with but as the years roll by things don't seem to follow the expected path. I think the consultant and me both thought 10mg would blast it - it seems it hasn't but I guess it's early days - however she has told be start reducing again after a month. I feel if I had stopped on 7 or 8 the last time I would have been able to maintain on that but the consultant always asked me to continue reducing - well water under the bridge - we'll see next month.

Thanks once again for the advice it's much appreciated.

"I think the consultant and me both thought 10mg would blast it - it seems it hasn't "

Unfortunately it isn't a case of "blasting it" and then embarking on a reduction to get off pred as is the case with other diseases where pred is used. PMR is only the name for the symptoms you experience because of a underlying autoimmune disease: this makes your immune system not recognise your body as "you" and it attacks the tissues, causing inflammation which leads to swelling, and the pressure causes the pain and stiffness in the muscles. Nothing has yet been found which will change the autoimmune disease so all that can be done is manage the symptoms.

When you are first diagnosed the pred dose you are given is one which has been found to work in the vast majority of cases, usually 15 or 20mg. A study in Italy has found that a dose of 12.5mg/day deals with the symptoms in 75% of patients. The next stage is to try to reduce the dose to the lowest dose that controls the symptoms because the lower the dose the fewer side-effects you are likely to experience in the short and longer term. As long as the underlying autoimmune disease is still active the swelling and pain will return if the pred dose is too low. It is a question of finding the borderline - preferably where about 1/2mg less allows the symptoms to appear as niggles, and believe me, 1/2mg can make that much difference!

Lots of doctors work on at least 2.5mg steps when reducing and then it is all too easy to miss the cut off point of being OK and enter a flare (a recurrence of symptoms). The most common cause of a flare is reducing the dose too far or too fast so it isn't a case of you being a difficult patient or being resistant to the steroids as some try to make out - the doctor (or the patient) has merely caused the flare by being too hasty. Think of it like a bushfire: the fire hasn't been totally extinguished, it is smouldering under a layer of sand thrown over it - if you break the seal by scratching at the surface of the sand it allows the glowing embers to break into proper flames again.

I assume you have 1mg tablets? Below 10mg you should never reduce by more than 1mg at a time - and by the time you are around 7mg you should be reducing by 1/2mg at a time to keep in line with the "never more than 10% of the current dose". It really does make a difference going down at 1/2mg a month and never forcing a reduction if you start to get niggly pains.

Eileen