Reducing & coping....so far

Bones, joints and muscles
1

Hi all...I am new to posting but here is my experience to date of PMR. I was diagnosed at the start of April this year, age 51 (was pretty disgusted as thought only people much older got this!!!) I was started on 40mgs deltacortril (prednisalone) & have been on a tapering programme over the last 6 weeks. I am now down to 17.5mgs & will go down to 15 in 2 weeks if my bloods are still OK. I still have to supplement steroid use with painkillers (Arcoxia & Tramadol) but my rheumy wants to get steroids down ASAP as I have managed to LOSE weight while on them...and I was already a bit underweight for my height !! I am delighted to report that, despite a very gloomy first 2 months with this, I am definately making progress, and have even been able to return last week to my beloved golf, albeit in a buggy with a doctors cert!! The main inconvenience I find with this illness is the unpredictability....one day great...the next not so good...and you really have to pace yourself and listen to your body. I know now, that if I do one physical activity a day, that I cannot do another aswell...or i pay the price the next day !!

Many thanks to all on this site for sharing your experiences, I have found it very useful to know I am not alone with this illness and to see how others are coping.

2

Hello to our Irish guest!

Do register and join the community properly!

I too was only in my early 50s when the symptoms of PMR appeared but it wasn't diagnosed for more than 4 years! There are acknowledged cases even younger than you so don't feel too disgusted - and I am sure that there are a lot of young patients out there who have not been diagnosed because of this insistence that it only appears in the over 55s.

I'm not surprised your doctor wants to get the dose down as you were started on a far too high dose for PMR - that is nearer to the sort of dose recommended for GCA which is usually seen as temporal arteritis. The normal starting dose for PMR is 15 to 20 mg per day and a response of 70% within a few days is expected - if that isn't achieved there must be a question about the diagnosis as there are several other things that may appear similar initially. So that means you are now on the normal starting dose! If you have a look at the other threads on the forum you will see some from MrsK who gives links to the PMR-GCA northeast support group where you will find very useful articles about PMR, steroids and other things (or google it!) as well as official guidelines for diagnosis.

You sound to still have quite a few problems even at that dose - so I have to ask, is your doctor sure about the diagnosis? I'm not too familiar with the Eire health service so don't know the structure. Was it the rheumy who diagnosed it? I had problems with the consultant but not the GP, strangely (or maybe not, on reflection as the GP had had patients with it before). Though if you can play golf you must be doing fairly well!

The other thing you MUST always bear in mind is that the steroids are only making the symptoms liveable with - they are not curing the PMR. And - we have posted in the last couple of months about this - the inflammatory markers, the ESR and CRP values, are not infallible. The only real guide to the success of reducing the dose is how you feel. If you feel good at a particular dose but the markers are highish, that doesn't matter. Conversely, if you feel rough and the markers are low - don't reduce the dose any further yet. My markers have never been raised, in fact they are exceptionally low.

And \"nosey\" has to ask - since there are no clues in your post, male or female!? It's less common in men and often manifests differently and they also may respond very differently. You are quite right about the unpredictability - the most irritating thing next to the fact you don't LOOK ill so only other people in the same boat understand properly! Even the doctors have no real concept of how bad we can feel sometimes.

Anyway, welcome to a group you don't want to be part of and keep visiting. Someone will do their best to answer any questions you may have however minor or silly you may thing they are. Sometimes it may be the thing that makes coping with PMR that much easier.

cheers,

EileenH

3

Hello Guest in Dublin!

Welcome to the forum and I'm sorry to hear that you have joined the 'army' of PMR and/or GCA sufferers, and at such a young age.

Firstly, I'm wondering why such a high starting dose of 40mgs Prednisolone if you were diagnosed with PMR - that dose and above is normally reserved for a diagnosis of Giant Cell Arteritis, and 15 to 20mgs is the recommended starting dose for PMR alone - in fact, I was started on 40mgs when diagnosed with both PMR and GCA (high dose to save the eyesight which is a high risk with GCA) and was told that a dose of 15mgs Prednisolone usually controls the symptoms and the inflammation. If you truly have PMR alone, then I'm very pleased to hear that you are being reduced quickly from that very high dose. Perhaps you could copy the list of the recommended Guidelines issued by the North East Support Group and take it along to your GP/Rheumy. You will find the website listed on earlier posts - if I quote it here the moderators will delay this post. Perhaps our Mrsk will pop along and quote it more easily!

You are lucky to be able to tolerate Tramadol - my experience after only one Tramadol tablet was not one I'd wish to repeat!

The main thing now is that you have got over what you describe as a \"gloomy\" first couple of months (I was totally disorientated on 40mgs but was reduced to 15 within 6 weeks as the blood test results permitted) followed by monthly 1mg reductions down to 5mgs - thereafter a couple of flare-ups occurred necessitating short-lived increases up to 10mgs.

As you have found, learning how to pace yourself and take it easy for a day or two following a day of high activity is some of the best advice that can be given to a PMR sufferer. You will find that as you reach the low doses you will be able to achieve more but at least for the time being you have been able to return to your golf, albeit with a buggy, which must have given your morale an enormous boost - well done! You may have read of the wonderful lady who posts here occasionally as \"Tinker\" and who still plays her beloved golf at the age of 85 and in spite of PMR! Very best wishes and good luck with the future reductions.

4

MrsO - this is getting scary!!!!!!! :lol: Separated by half a continent and we still psot at the same time!!

5

May I take exception to the two posts that say 40 mg is too high a dose of prednisone at first? My rheumy explained that GCA must be suspected until ruled out, if ANY of its symptoms are present (in my case, pain in both jaws). So, I was started on 40 mg and had bilateral temporal biopsies to rule out GCA. I stayed on 40 mg for 4 weeks, then went to 30 for 3 weeks, and 20 for 3weeks. Now, 5-1/2 months later, I am on 10 mg and still need Darvocet to deal with the pain. I love this site and have learned quite a bit from it. We are all so very different, which, I guess, is why there are so many different medications, protocols, etc. May we all eventually be well! Peace!

6

Hi

I too was diagnosed with PMR in april at 51 and was put on 40 mg to start with I reduced to 15 this am I have had a few hick ups on the way, it took me 3 weeks to come down from 16 so we will see how I go this week. I have not seen a specialist as my GP is looking after me I had the initial blood tests and found they were double the normal level he wants me to take my time reducing and see him again at 10 mg I am not on any pain relief. I am guite happy how things are going

Koukla

7

To Guest in Dublin,

I'm sorry if you took exception to the comments about 40mg being too high - but, in fairness to us, there had been no mention of GCA in the original post. Of course it is OK if there are temporal arteritis symptoms, it is a serious disease and requires a robust response. You were lucky to have a doctor who recognised it.

However, in our defence, according to the recommendations from the British Rheumatologists the starting dose for a presentation that is likely to be PMR says max 15-20mg/day. At the launch of the PMR support group DVD in May there was considerable discussion amongst the 3 rheumatologists who were there on the \"high table\" that anything higher than that is too high for PMR and they are concerned that doctors are over-medicating. The aim should be to keep the steroid dose as low as possible, preferably starting with a trial at 15 mg per day. If only a partial response is obtained then it is reasonable to go up to 20mg to start with but with the aim of getting down as soon as possible. These are some of the leading consultants with a special interest in PMR, so one would assume they have some idea what they are talking about.

You're quite right about how we are all different - so are the doctors and many of them struggle with PMR as well! Many doctors are scared of using steroids at all because of the side effects which are a particular risk at the 40mg end of the scale - hence our concern.

Please accept my apologies, no offence was intended,

EileenH

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Hello to Dublin Guest

I'm so sorry if my reply to your post has caused you any upset. However you did only refer to PMR in your post in spite of which I did still go to great lengths to explain that in the case of GCA then a 40mg dose was essential. Of course, now that you have mentioned that GCA was suspected as you suffered jaw pain then that changes the picture. I, too, suffered jaw pain at the outset of my illness but, unlike you, I did not have such an \"on the ball\" GP and, in fact, it took visits to 4 different GPs until GCA was diagnosed.

Having suffered from both PMR and GCA for the last 4 and a half years, I have gained much experience of both conditions and of Prednisolone. On such a high starting dose of 40mgs I did develop one of the major side-effects of the steroids: osteopenia (thinning of the bones - the stage before osteoporosis). Therefore, in my view it is crucial that anyone with just PMR is not over-prescribed.

Once again, apologies for causing you to take exception when all I wanted to do was help!

MrsO

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Guest

May I suggest, most respectfully, that you visit www.pmr-gca-northeast.org.uk.

On that website under News and Events, you will be able read some of the presentation made by a leading expert on PMR.

There is also a copy of the British Society of Rheumatologists guidance on diagnosis and treatment of PMR and GCA.

You will see that as currently there is no known cause or cure for either PMR & GCA and prednisolone relieves the symptoms but does not cure PMR.

PMR and GCA have minds of their own and come and go when they want.

The aim of the prednisolone is to enable you to live a life as comfortable as possible.

The site is well worth reading as knowledge is power.

Some Rheumatologists, want to get you down as low as possible as fast as possible, unfortunately, I have yet to meet a Rheumatologist who has had or is suffering from GCA.

The 'markers' that they use are guidelines only to whether inflammation is present, some people with PMR never have raised markers.

Countries have different levels of markers, and even within the UK, different trusts have different markers.

Just remember you know your own circumstances best, but people on this site do their best to help each other and without that helping hand, I for one would not be as optomistic as I am today. I must add very rarely have I seen any contribution put down so sharply.

Finally, may you PMR take a long walk of a short pier very soon, and may you never get GCA.

Good Luck in the strange journey you are embarking on. But remember, we are all here, however daft the question, in the words of another contributor 'there are no silly questions - just questions.

10

Hi all...I did not post the response taking exception to comments about my starting dosage of 40mgs, so others must have also started on that level!! My rheumy started me on that dose because tests for GCA were inconclusive as I had already been in hospital for several days on various painkillers and he wanted to err on the side of caution.He is still not 100% sure that I definately have PMR but I have been scanned & xrayed from head to toe and had every blood test going and PMR was the nearest match to my symptoms given that my CRP and ESR levels were very elevated! By the way, I forgot to mention that I am female (still have trouble describing myself as a woman V a girl !!) Does anyone else find that the steroids disrupt their sleep...I regularly wake up at 4am regardless of how late I go to bed. Seeing my GP tomorrow so hope he can give me something to put back on the weight I've lost..tried some high protein shakes but they were absolutley vile...like drinking liquidized seaweed !!

11

Hi Dublin!

Well - sorry again! If people posted by names this sort of mix-up wouldn't happen!!!!!!! :roll:

It's very common not to be able to sleep at the higher doses although some people find it worse than others. Some people get almost manic on the starting doses and, in fact, it can be bad enough for them to have to come off corticosteroids altogether. The GP is meant to see patients fairly often to monitor for that. As you reduce the dose it should improve. It's also one of the reasons that most doctors recommend taking the dose once a day as early in the day as possible - normal production of cortisol peaks between about 4 and 8 am but no-one is going to get up at 2am to take their tablets are they! :lol: On the other hand, some people split their dose, taking some in the evening and don't have a problem sleeping.

Now weight loss - there's a problem a lot of us would like to have!! It isn't uncommon to find weight loss in PMR though - I didn't, put it on as I couldn't do anything and was permanently hungry!

cheers,

EileenH

12

Thanks to Eileen H...I put in \"Dublin\" without thinking of mix ups in identity and don't know how to change it to something more identifiable!!!

and to Mrs o....It took me some trial and major error with the Tramadol...when I first started taking it I was a major zombie, but found that if I took the Tramadol and arcoxia before going to bed the pain in the morning was much less severe and without the fuzzy head that I had if I took it during the day.I was also very anaemic when first diagnosed...did anyone else have that? I had to take iron tablets and go on Vit B12 injections...but my rheumy thinks that it was a separate issue and not related to the PMR.

13

Hello again Dublin! Apologies from me, too! I have been posting on this site for a few years now and this is the first time there has been a mix-up. I suppose it had to happen at some time when people post as \"Guest\" rather than registering on the site with an identifiable name.

With regard to the weight loss, there are going to be so many of us on this site that would love to know the secret! Seriously though it's obviously a problem for you if you were already slight before embarking on the steroids. What many of us have discovered is that we have to be very careful not to consume too many carbs whilst taking steroids as that definitely contributes to the weight gain so what I'm wondering is if you upped your carb intake whether that could help to work in reverse for you. I know of one lady who posts here (think she may be on holiday at the moment) who also said that she lost weight when commencing on the steroids.

I, too, became temporarily anaemic during my first year with PMR. However, the PMR remained undiagnosed by the consultant so I was not on steroids at the time and therefore the anaemia in my case does appear to have been a symptom of the PMR itself.

That was a good idea of yours to take the Tramadol before going to bed so consequently becoming unaware of the zombie state overnight - they really are a very strong painkiller (I think they may be morphine-based)but I recently met someone who takes 2 or 3 every day and they don't have any effect on him! What different souls we are!

Very best wishes,

MrsO