reducing steroids

I'm a bit late in to this discussion, but for anyone interested I did take MTX for two years as a steroid sparing agent. I was having real difficulties in reducing the Pred and had some weird side-effects showing, so I weighed it all up and decided to try MTX.

For the first year it worked fine and I was feeling good having reduced to 2.5mg daily. I had only achieved this once before at the beginning (better explain that I have been on steroids for nearly 11 years now and that first reduction was blasted by being diagnosed with late-onset asthma) but then I had the daddy of all GCA flares - the low dose was apparently controlling the PMR but allowed the GCA to slip through the keyhole. Back to 40mgs a day and my language was not printable!

The second time around it became apparent after a few months that the MTX was not doing the job any more and I asked to be taken off it, no problems there. I had a further GCA blip but have now (I'm whispering this quietly) managed to get down to 5/5.5 alternate days and feel better than I have for some time. If the GCA hears me it will come back to bite me!

As far as the MTX itself is concerned, I did have side effects to begin with - nausea and a bit headachy, but they disappeared after a few weeks and for the rest of the time I was fine. However, that is just me - like Pred (and PMR) it's a very individual thing - I don't believe now that anyone can forecast how they will be on it/them, least of all doctors

I so wish we had some of the gyms/centres where I am now living, but this is a retirement area (I should know as I retired here) but it does seem to be peopled with little old ladies (and gents) on their racing mobility scooters; I'm afraid to shout 'exercise'! at them, they might break into little pieces.

Oh, as far as work goes, I was diagnosed at 57 having had the symptoms for some considerable time previous to diagnosis. I worked until I was well over 65 and that includes 18 months on MTX - it was after we had moved here to sunny Sussex that I gave it the push. I was very, very lucky, I had the best team of work colleagues I could wish for and we had a lot of laughs along the way.

Hoping for short PMR journeys for all the new ones -

Catie

Hi Everyone

I was wondering if anyone could help me again. I am now following Eileen's advice about the electric blanket and Mrs O about the yogurt etc. What I was wondering about was has anyone any thoughts on 'pillows' since reducing the pred my neck is sore getting up I then use a wheat bag which helps but I was wondering if a different pillow might help?

Dalzell

Hi Dalzell

I have encountered the same difficulties with neck pain. I have bought a variety of pillows with no effect. My physio advised just one flat pillow. I use this but t also have a small heat pad placed over the pillow the heat seems to be the best to loosen the muscles for me. I got it in Argos. It turns itself off after 90 minutes. Would be glad to here of any other remedies

I had a very sore neck early on after diagnosis, which disappeared completely when I bought a shaped memory foam pillow - it has a raised area at the 'bottom' of the pillow which fits into your neck and so keeps the neck and spine straight. I know they are not for everyone, but I do think they are worth a try.

Catie

Once again thank you for the advice it's great to have everyone out there with experience of these things.

With regards to the memory foam pillow - do you need to sleep on your back?

"With regards to the memory foam pillow - do you need to sleep on your back"

No - if you get the right pillow you will be able to sleep comfortably on your side - that's the idea. There are all sorts of designs but you need to try which fits you best.

A physio recommending one thin pillow must have been hallucinating - I take it they didn't ask about sleeping position? That would be for sleeping on your back, a thin pillow is usually useless if you sleep on your side isn't it! I have two totally different ones - the old one is a relatively cheap solid sort of effort. The other is a memory foam one and although I had tried it before ordering it once I was using it all night it was no use when I was still having the night sweats - it just kept getting flatter and flatter because I was so warm. Now I use a very scrunchy fairly reasonably priced IKEA one and have no real problems but the ergonomic pillows are more use now too. Sometimes you can use a small pillow together with a normal one to get the right shape.

But most neck problems tend to stem from back muscle spasm. If you can afford it try and find a good massage session. Lots of private physios offer it - I bet you have some tightness in your shoulders which is affecting your neck.

Eileen

Ouch! Yes I remember that neck pain. I tried so many different pillows, some cost a fortune, but I didn't find any of them comfortable, even the wedged pillow that Nefret recommends and which a close friend finds great for her. Whether that is because I'm unable to sleep on my back because of a spinal problem, I don't know, plus I've got quite a large protruding bony bit at the middle of my neck at the back. However, at one of my Pain Management classes that I attended, the physio there recommended a medium to softish ordinary pillow and demonstrated how to sort of scrunch it into and around our necks (sorry, brain not in gear today to describe that any better . I do this but with two such pillows and everything is fine. At my worst, I invested in quite a large electric heat pad and used to sit with it around my neck and shoulder area - sounds the same as Faygirl's as I also bought it in Argos. Bought one for my neighbour as well and she swears my it.

I mostly sleep on my side, usually the left one. What I can't do in any position is sleep with my neck and spine out of alignment - I have to be completely straight. Like Mrs O, I did have a problem with it when I was sweating badly and even now I sometimes have to wrap it in a big towel. If I do that, I can dispense with the very thin pillow I use underneath the memory foam one (I put my phone under it just in case there are any calls from NZ in the middle of the night).

I believe the next generation of memory foam pillows are being produced using crumbs of the foam. I intend to try one to see if it is any better although I am satisfied with those I have at the moment.

Catie

Once again thank you very much for all your suggestions - the memory foam crumbs sounds good it sounds more like a normal pillow I'll certainly look out for them. Last night I tried scrunching my pillow under my neck making a wedge shape - it worked really well - nowhere near as much pain this morning. Thank you all I really appreciate it.

Hello, First time I have ever joined a blog but have found all your comments useful but depressing.

I was under the impression this condition blows itself out after 2years. With careful drug management.

My question is, has anyone had adverse reaction in the eyes taking pred.

.GP has just diagnosed PMR and she wanted to treat but I opted for private (so lucky) rheumatologist.

Appointment tomorrow, today at 5.30pm.I cant belive i,m awake at 3.40 am.

Such pain and immobility is unreal, I was playing tennis 4 weeks ago. I fully understand pred. Is the drug given for PMR but I have closed angle glaucoma and am terrified of taking this kind of steroid. A cortisone injection given for trigger finger had huge reaction on eye although eye man refused to link the two.

Would be so grateful to know if anyone has had eye problems while on pred.

Many thanks in anticipation of any answers.

DB

hi i have not had eye problems but i am sure someone will come back with info ,i totally understand your fear of sterroids and most people go through a period of ??can i manage without but apart from very very mild cases and even then risking gca the answer quite frankly is no you cant control pmr without steroids ,reading the info on the other forum will help you understand ,burning itself in two years quoted by many drs etc is a myth this a goal where goal posts move if you are free from pmr in two years great but we are all different and our pmr is unique to us .its a slow long journey but bear in mind once the steriods dampen down the symptoms life improves with some adjustments !!!! eg more rest and gentle exercise .keep coming back it helps to talk to people who have been there and the more i hear of drs etc the more i realise they are not always well informed good luck carolk

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