PMR and bursitis

Hi InMadrid! Yes! Bursitis is a common manifestation in PMR and is particularly common in your shoulders and hips. My shoulders were stiff but I had no bursitis there but my hips were terribly painful in a typical trochanteric bursitis pattern, right down into the hip socket. I'd had PMR but with no diagnosis since I was about 52/53 (too young, no elevated blood values ever) and the bursitis was there but no massive deal unless I walked a lot and I had the occasional twinge if I stood wrong on it. Then, almost overnight, it hit like a 10 ton truck and then the bursitis was excruciating. That was in January 3 years ago and it still wasn't recognised (there were other things going on) and over the following 3 or 4 months it improved as long as I didn't do stairs or walk too far - I came here to our then holiday flat and skied, I could just manage to walk to the village to get the ski bus, about 400yds, in the morning, it was much better coming home. I returned to the UK in May and was finally allowed to try pred in late June and it had the same miraculous effect you experienced (he still insisted it wasn't PMR though, luckily my GP was friendlier).

I eventually realised after several months that the bursitis had gone and it only is a problem if I try to walk a longish distance - which I struggle with anyway. I walked around town with my husband last week and after about a couple of hours on my feet was suddenly in quite a bit of pain for the last couple of hundred yards, But after a rest it was gone again and hasn't happened again. Pre-dx it used to wake me at night in a cramping form - never happens now.

I'm surprised you got them as separate entities when you searched. There are several studies where identifying bursitis in combination with the stiffness etc of PMR has been used as a criterion for dx of PMR and differentiating from rotator cuff injury and so on. Your bilateral presentation is quite typical in severe PMR but sometimes one side starts before the other and a mis-diagnosis of frozen shoulder is made or the patient is led to believe they might need a hip replacement. I found lying on my side to do Pilates very uncomfortable but the pain wasn't really severe, just achey, for a long time.

I know people who have not had much benefit from these exercises to help trochanteric bursitis and they hurt LOTS I'm told. However - I think it is fair to say it will get better in time and until then try to restrict the walking to allow it to improve. I avoided stairs for some time, that made it worse - our second floor flat here has a lift but the UK was another matter. I was at a stage where more than a hundred yards was agony but even without pred by not walking any more than I had to and not doing stairs it improved loads in about 3 or 4 months.

So your doc is probably right though I wouldn't agree the TB is "in addition to", I think it is part of the PMR though not terribly common. Other bursitises are more common. But remember one thing in particular: the pred is to manage the PMR - but you have to play your part! Just because you feel so much better don't go mad! Management is a partnership between your activity and the pred dose. If the lower pred dose means you are back to square one then it is definitely too low. But initially you have to give your body a chance to heal and avoid triggers that hurt. You'd be amazed at how many people jump to the conclusion the PMR is back - forgetting that they did the spring cleaning and the shopping and walked the dog! All because they hadn't been able to do it for weeks and now, with pred, they felt well enough to do it. You may or may not be totally painfree - some are, some aren't. And when you are reducing. try not to reduce by more than 2.5mg at a time, preferably less, and clear the decks, avoid too much excitement and activity that week, don't commit to do too much - and the reduction will go more easily.

all the best, Eileen

Reading this with interest, Eileen.

InMadrid, I suspect that I have hip bursitis and have been struggling for some weeks with it. Right now am trying to take the steroid dose earlier in the mornings as that seems to help.

I'm 10+ years down the line with PMR/GCA and these setbacks are really, really annoying! I've lost count of the times I have had to go back to a high dose of Pred for one reason or another. Am currently reducing again and down to 10mg a day and the only thing which will make me put it up again would be another GCA flare.

Do let us know how you get on - I will probably be seeing the doctor some time this week as my patience is wearing thin.

Catie

Thanks so much to both for replying.

Eileen, what you say makes perfect sense, and is a wonderful help. To be fair to my doc he may not have said I have the bursitis in addition to the PMR, it’s just what I took his explanation to mean, so I am sure you are right about it forming part of PMR, at least in our cases! And it also sounds like a good idea to go easy on the first days when cutting down the prednisone dose, something I didn’t do – rather the opposite in fact (patience never was my strong point…), and then, just as you said, thought I was getting worse - so I will now be sure to avoid overdoing things every time I reduce. Just like you it is after walking too much that my hip is at its worst – very frustrating because it is one of the few healthy activities I enjoy doing! I especially miss walking to work…

Catie, I will definitely try taking my first dose earlier in the morning. At the moment I wait until I have breakfast after I get to work so I don’t take it until 10. Ten years is an awful long time to have this, are you now stable at 10g? I hope all goes well for you. Will definitely get back with any developments in my case, although I am not due to see my doctor again until May 31st, unless I have a relapse.

Many thanks again,

Gill (InMadrid)

Hi Gill (at last, a name ;-) )

You really need to take the pred by 8am at the latest for optimum effects, both in terms of the day being good and also being better able to sleep at night. I can't cope with breakfast before 9am (unless I'm going skiing and anyway need the pred effect to do that) so I get a bowl of natural yoghurt and take the pred in the middle of that. That seems to avoid any gut irritation and is easy enough to do. My husband gets up just before 7am to get tea and then watches Sky News in bed so I am awake anyway. Personally I'd rather sleep longer but whatever...

It was MrsK who brought up the "clearing the decks" concept for reductions. It is totally counter-intuitive to reduce AND do more at the same time - but so many people seem to not think about it. Lots of people find the first couple of weeks after reducing hard going, especially once down to around 10mg and below, probably as the body then needs to make a bit of cortisol to keep us functioning. My rheumy quoted amounts of 10 to 30mg/day as the normal amount of corticosteroid we make (which is a bit higher than some others say) so as the pred dose falls our body is having to start up its own production again and it will take a bit of time to oil the wheels so to say and get it functioning well.

Maybe there is a subconscious "I must be getting better" feeling that makes people go off and prove it???

Eileen

Hi Gill

Just to let you know that I saw a doctor this morning, not my usual one. Very young and it turned into a 'could be' situation - it could be one of several possibilities according to her.

She did give me more pain relief and has referred me for physio, so will wait and see what happens. I still think it is bursitis and it really does seem to help if I take the Pred very early in the morning.

Catie

Hi, and thanks again to both for your replies.

Eileen, you are an absolute font of information! How long have you had PMR? If you can ski the meds must be working really well - I think I would need a screaming ambulance if I tried anything like that at the moment (and probably at any other moment if I’m honest!)! My hips are a bit better today but still a bit sore… I normally wake up at 8 so this morning I tried taking my morning dose with a yogurt the moment I got up (I can eat anything anytime – unfortunately!) and so far so good. The problem is the earliest I get in on an evening is 7.30pm and I eat at 8.30pm (early for Spain!) so I am going to have to factor in another yogurt around 5 to take the second dose – I am a veteran insomniac so anything that helps me sleep better is great – I have been taking a small dose of over the counter anti-histamine based sleeping tablets (except on holidays) for years, which normally work like a charm, but I notice they have less of an effect with the prednisone…

I had no idea of the usual quantities of cortisone the body makes – that’s really interesting. My doctor did say that there are people whose bodies make less than perfect quantities who could benefit from staying on permanent very low doses of cortisone, but that would be my choice when the time comes to consider that option. It is something that I will consider, particularly because my mother was “cured” of a serious lung disease by prednisone and lived a perfectly normal life for 5 years until a doctor persuaded her to give up the minimum dose, after which she was totally and irreversibly incapacitated in a question of two weeks – something I can never forget, obviously.

Catie, I do hope the pain relief works for you. The NSAIDs I was on before I started on cortisone really wreaked havoc with my body and so I haven’t taken one since then. Before I found my good doctor, I contracted a course of physiotherapy and had had 6 sessions out of 10 when I started on the prednisone, so I think I will go back for the other 4 sessions now and ask them to focus exclusively on my left hip – when I had so much pain everywhere before it was difficult to know where to start! I have a friend with hip bursitis who responded really well to massage (although I think whether you respond well is the luck of the draw, to be honest!).

I am also seeing a rheumatologist this evening although really it is just a formality to get my blood tests done on my private insurance, but I may as well run a few things past him while I’m there. This particular doctor is getting on in years which means he has the experience but not necessarily the latest thinkings on PMR, while the doctor I had first was really young and was very up to date on latest theories but had no experience. I’m so glad to have found the one who is treating me at the moment who seems to have a good combination of the two.

Here’s wishing everyone a pain-free existence!

Gill

I even skied in the early stages of the PMR being bad pre-pred but I had been going to the gym previously and my muscles were in fairly good shape. The last 2 winters I started the winter able to do a bit and had to have a couple of days between going but by the end of February could ski for quite some time 3 times a week. Then I tore my knee ligaments at the start of last April and had nearly 6 weeks unable to do anything much. This winter has been a disaster - it started with poor snow and not very nice weather so not good for rehabbing poorly knees ;-) and then it was Christmas (millions of people) and then I went 3 or 4 times and could already feel the difference when the temps fell to -14C and continued downwards and then the wind came. Unhead of here usually, but we had low temps and high winds for 6 weeks! So I've hardly skied this year and boy can I tell the difference :-( I will have to find something I can mange for this summer. But skiing was easier on the bursitis than other exercise and I find the movement in skiing ideal to mobilise the other muscles.

I've had PMR for a total of nearly 8 years but relatively mildly and not diagnosed for 5 of them and will have been on pred for 3 years in June after a mega flare which left me almost unable to move - still took 6 months and the rheumy disagreed, wanted it to be some other arthritis that doesn't respond to pred and mine did. I had had something else and was stopped from driving because of query epilepsy (it wasn't, the consultant didn't listen to me) and I could do nothing at home so I struggled to get here and skied - but the lack of stairs and the prescence of a dishwasher helped loads ;-) as well. I spent the evenings on the internet looking for possible diagnoses and voila! I found it by accident on a medical blog in fact but then I found this forum and the rest is history. I have a medical science background so it was natural to do the background reading and have probably read more about it than many GPs, more than some rheumys judging by what I have met with in the last 3 years!

Now - why are you taking your cortisone as two doses? The recommendations are to take it as a single dose early in the morning: this mimics the body's natural production most closely and also (hopefully) minimises the effect on your sleeping pattern. Some people do find splitting the dose as 2/3 in the morning and the rest at night helps with next morning stiffness and a very few take the dose at night but that is quite unusual. I take mine as a double dose on alternate days - it usually works for me and is one way of minimising the side effects long term. The antiinflammatory effect can last anything from 12 to 36 hours so if you are a 12 hour person it won't work. It is something to consider trying once you get down to 10mg a day, not before. However - the main point is that using pred in PMR is nothing like using pred in most other illnesses. It is being used to manage the amount of inflammation which is what causes the symptoms - taking the pred away will allow that to start up again and you may be back to where you started. And it is this that is often the primary difficulty in our relationship with our doctors - they have been taught that pred is BAD and patients must be got off it as soon as possible. They are also used to reducing by steps of anything from 2.5 to 5mg at a time - and in PMR that usually spells trouble. 1mg at a time is ideal - you may be able to reduce at 1mg (but not more than 10% of the current dose) every 2 or 3 weeks until you get to the point where you find the dose that is controlling the pain. But you need that gap between reductions to see if you can cope on that dose - go down too fast and you won't actually know the dose that was OK and the dose that wasn't.

Someone in the UK recommends Nytol - but the one inthe blue pack that has to come from the pharmacist I think, not the ordinary one. No idea what it would be over here!

Hope this hel

Cut off again! Glad I checked!

I finished by saying:

I hope this helps - ask all you like, all questions gladly researched!

so now I will add:

And in view of the mess this site is still in - do come and visit us on the other one: pmrandgca dot forumup dot co dot uk where you will find a load of the info we've collected over the years that used to be easily available here. I see Rick has had enough - better go and read what he's said! He's over the other place too - but we've also got problems with the US arthritisinsight forum which Rick suspects has been hacked. The joys and otherwise of the internet ;-)

Eileen

Im the one who recommend Nytol ! Works for me

I have always taken the full dose in the morning and once I got below 10mg my sleep pattern improved a lot Some of the Americans take their tablets morning and night but in the Uk it is always in the morning

Hope your sleep improves

Hi Gill, I take all my steroids in the middle of a small breakfast & always before 8am (go back to sleep if I can). It don't think its 'all in the mind', but if I don't take them early I am definitely less good that day.

Also can definitely vouch for PMR & bursitis being good friends. Both my hips are affected & now (when PMR is behaving anyway) it is more of a pain than the PMR. When the PMR is bad, so is the bursitis. Eileen has said here I think, and on the other forum, that bursitis can take a long time to resolve, though there are treatments for it.

Margaret

Thanks once again for your replies, they are much appreciated and they all help!

Eileen, sorry to hear of your long journey to a diagnosis - I knew within days that I had polymyalgia because I had the classic symptoms and it kept coming up in every search I did, but my first rheumy insisted I was too young ( if only!) and should keep taking painkillers (which did zilch) and doing the exercises (which actually made me feel worse...). It is beyond annoying to think of all the people that suffer for so long because of incompetent doctors, grrrrrrrrrr. Anyway I am thankful I have a really good doctor now and people like you who can give so many useful pointers -thanks for the other website details - looks really interesting.

Thanks Mrs G for your info, I take something that is called dormidina here in spain and it works really well - it's antihistamine based. Taking my steroids earlier has definitely helped! though it is difficult because Spanish eating times are so much later...

And thanks Meggies for your input - the only problem is that although I can quite happily eat at any hour from a hunger point of view, if I have something to eat at 8am I will just carry on all day - and steroids are definitely not helping my weight! What I might do is try taking just a stomach liner - one more pill won't harm I suppose tho I am beginning to feel like a junkie (HRT pills, thyroxine, vit C, calcium, steroids, dormidina....). My doc seems to think that the bursitis will probably go away on its own, but will take a while.

Thanks again all!

These are mere thoughts but I wonder what would happen if you took your pred late at night - would seem an ideal time with Spanish hours! We spent 3 weeks in Andria (about level with Sicily) with an Italian colleague of my husband's over Christmas and New Year last year. It was exhausting - rubbish breakfast at 8.30 at the earliest comprising a few sweet biscuits (yuk) and cup of espresso, lunch was a 3 course meal at 2.30-ish and dinner was at 9.30 if you were lucky so you went to bed at midnight. If I had to do that on a permanent basis I would definitely try taking my pred at midnight after the big meal. It gives your stomach a good lining for the pred and the meal would mean it'd take longer for the pred to be absorbed into the blood from the gut so you would probably get the benefit in the morning. You'd have to see if it meant it woke you too early in the morning though.

You know, I'm really surprised at a rheumy pushing painkillers and exercise in a patient with muscle problems - that's something I expect from a British GP. There's been discussion on the other forum as well as here about exercise in PMR - small amounts and very gentle seems to be the consensus from sensible physios who know about it. Certainly I know afterwards when I have done too much and I try stop before I feel tired. Mind you, the rheumy I saw didn't offer physio, just a drug that doesn't work in PMR and needs fortnightly monitoring of bloods by a rheumy and you have to avoid the sun. Yeah - right!

Eileen

I have suffered from bursitis of the left hip for about 8 months. Due to lack of progress I arranged for a referral to have cortisone injections with the aid of an ultrasound.(this was never carried out)

In the meantime I have been taking fish oil and had noticed that the bursitis came and went. I observed that the pain was at its greatest when I had not taken my supplements for a couple of days. I purchased some krill all and took 660mg a day. Over a period of two months the pain associated with bursitis has improved dramatically and movement of my left leg has improved significantly..

I realise that this is by no means definitive but it is a low cost alternative worth trying.

I have now deferred the injection indefinitely.

Hi phill1

During my years on steroids for PMR and GCA, I tried to include oily fish in my diet at least three times a week and, like you, found that my pain seemed to worsen if I deviated from this routine. Although not a cure for PMR (nothing is sadly at the moment), I certainly proved time and time again that the oily fish helped me, and you are the first person I have come across to say the same.

Not only is the oily fish a good anti-inflammatory food, it can also help to protect our bones from thinning due to the steroids.

I am a firm believer that a good diet containing lots of known anti-inflammatory foods and few of the 'baddies' (refined carbs, processed meats, sugar, coffee, alcohol) is essential whilst battling PMR and steroids.

The Krill oil sounds interesting and may prove helpful to others - meanwhile, long may it continue to help you.

I have just done a bit of research on Krill oil and I believe it's important to point out the following:

"People with allergies to seafood shouldn't use krill oil. People with bleeding disorders shouldn't use krill oil unless under the supervision of a qualified health professional."

As always, check out all supplements etc before buying OTC especially to ensure that they are compatible with steroids.