PMRGCAuk

What a Difference a Day Makes…

About three weeks ago my GP referred me to Rheumatology via the new NHS Rushcliffe CCG system. The official take on this new system is…

“The changes we are making to the musculoskeletal service will simplify clinical pathways for patients and clinicians and offer more care in the community. This will ensure patients are directed to the correct service, and will ultimately mean they receive treatment quicker, delivering better clinical outcomes. “

Yesterday.

I made a number of calls to my local CCG, my GP’s surgery and the Rheumatology Department at Circle Health, Nottingham to try to find out how this referral was progressing – or not.

I am not good at cutting stories short I much prefer the circuitous route but…it would seem my GP’s referral was rejected in favour of me being referred to the Community Pain/CFS clinic.

So, my take on the new referral triage system is…

“Send this patient to the cheapest service we offer as she has ME so her aches and pains must be related to this if not all in her mind. A bit of cognitive behavioural therapy and a few yoga stretches, and she’ll be just fine”.

I realise that the triage clinician can only work and assess from the information he receives from, in this instance, my GP. But, my GP is pretty thorough in her approach and she believed my symptoms were “rheumatic” in nature so I feel she would have emphasised this in her referral.

I felt really quite insulted by the referral to the CFS/Pain clinic. I’ve had ME for twenty-six years and managed my pain and all the other associated symptoms with very little support other than the love of my close family and friends.

Prickly? Definitely. I could probably lecture at the clinic if only I were well enough to do so.

Today.

Cancellation appointment – rarer than hen’s teeth - with Dr M, the Endocrinologist who has looked after me for the last ten years. He is a Consultant in Diabetes, Endocrinology, Metabolism and General Internal Medicine so we’ve got quite a lot of bases covered.

I last saw him in mid-January which is when I seemed to enter an acute phase in terms of bilateral joint & muscle pain and general “un-wellness”. Strangely, I recall refusing the normal weigh-in because I said I just couldn’t cope with the pain of taking my boots off and on again.

I gave Dr M a written summary of these “different” symptoms which started off relatively mildly last July and to how they had manifested themselves since that time. (It’s much easier for me to explain things in this way in case I have ME brain fog on the day).

We discussed things upside down and back to front; but his emphatic conclusion was that I have Polymyalgia Rheumatica.

Dr M’s view is that we have caught the condition at its early stage of manifestation. As such, he is treating me with a ten-week course of Prednisolone.

I am to start on 10mg Prednisolone tomorrow for one week. Reducing by 1mg each week over the next ten weeks.

He says he is quite confident in his diagnosis, but the steroids will only be effective if the underlying condition is PMR.

As I said, a day can make a big difference, so we’ll see what tomorrow brings after my first 10mgs of Prednisolone…

22 Replies
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Aaaah! I don't know if I should be happy for you because you have what seems to be a sensible diagnosis, or appalled that you have been given a ten week course of treatment rather than the standard one week trial at a moderate dose to see if it helps, and then continuation of dose if it does work for at least a month, with a very very slow taper thereafter, which might take a couple of years, to reach the lowest dose which will continue to control the symptoms until the disease burns out.

rcpe.ac.uk/sites/default/fi...

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Hello HeronNS

Thank you for your reply and I appreciate your comments and interest.

However, I don' t really understand why you would be appalled at the regime that has been suggested.

Maybe, I didn't provide enough information as I have been advised to contact my Consultant if the pain and associated symptoms do not respond to the steroids within the first week.

Kathy x

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If you have PMR it is not cured by pred. Pred works to control the symptoms by reducing the inflammation. If you do not take enough pred, or if you taper too soon or too quickly, you will experience a return of symptoms, which can be much harder to get under control again if that happens. I do not think anyone has ever recovered in ten weeks from PMR.

It is, of course, true that if pred doesn't help the pain within a reasonable length of time, sometimes hours, usually within a few days or a week, it either isn't PMR or your starting dose is not high enough. Ten mg is on the low side. Fifteen to 20 is more usual. But you don't need ten weeks to determine whether the medication will help you or not. If you don't have PMR and the pred doesn't help you can stop after a couple of weeks and not have to worry about tapering.

When I was first diagnosed I was not told by my doctor that pred was not a cure. I thought I'd be done and dusted in three months. I do know better now, nearly three years later and taking 2.5 mg pred a day. To start I was on 15 mg for five weeks followed by a taper of 1 mg per week until pain returned at 9 mg, when I started a slow taper plan which I've followed ever since.

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Thank you again for taking the time to reply to me. I do know that the steroids don't actually cure the underlying cause of the PMR symptoms.

However, I do know that the cause of my inflammation is related to a mesh implant I had fitted in September 2016. My immune system reacted to the "invasion" of the mesh. The result being a chronic inflammatory response ever since. My CRP has been raised since that time.

I don't know why the consultant has opted for this short regime. He did say to me that ordinarily treatment would be at least 18 months. Maybe he thinks we can treat the cause of my inflammation in this time.

I also have a number of auto-immune problems which might be another reason why he has chosen to treat me in this way initially.

He also told me to contact him if I didn't respond to the Pred relatively quickly - I certainly wouldn't continue with it if it didn't alleviate my symptoms.

I I also realise, from much of what I have read on this site, that the condition can last considerably longer than maybe first anticipated.

Thanks again for your comments and advice - Kathy

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Hi Kathy, as your consultant says you should have a magical moment in the first week if it is PMR, although 10mg is quite a low dose, 15mg - 20mg is more normal. I don’t understand why he thinks you can stop taking steroids after 10 weeks though or have I misunderstood? PMR normally lasts at least a couple of years.

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Hello piglette - thank you for your comments. I'm not too sure why my Endo has decided to try to treat me over a relatively short period. HeronNS more or less asked the same question and I have tried to answer it above in my last response to her.

I do know that he believes long term steroid treatment for me would be very problematic because I have a number of other auto-immune issues.

I'm happy to go along with his suggestion at this stage - at least he's shown some interest in trying to help me!

However, I also realise that if it is PMR I could be a member of this site for a considerable time. Thanks - Kathy

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Hi Pipalina, it does seem that if you have an auto immune disease you are more likely to get another one as opposed to the rest of the world. As you say it is nice to have someone who actually shows interest and hopefully if there is a glitch he will review his suggestions.

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I agree with heronS. It's good they are prescribing test dose of pred. But it might be better to start at 15mg. If that really helps by week 2 it is more usual to stick there while the inflammation is reduced. If this is PMR you should know by then. The Dr definitely need to read the guidelines .

I was reduced similarly by gp. I knew no better at that point. . I was reducing 1mg every three to 4 weeks. By the time I came down from 15mg to 8mg I was in agony and was told to keep adding 1mg. After 6 months I was back up to 15mg. That was Feb 2017 that I was at 15mg and I am still only at 9mg.

I was lucky that my gp said she was prescribing pred for symptoms of PmR and if they significantly helped them I could expect to be on them at least a year and more like 2yrs. Info this year is that it is average of 6 years.

Just be fully honest about how you feel. It's no wonder people store pred.

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Hello Poopadoop and thank you for your reply and comments.

I have learnt from many of the posts on this site that PMR often seems to last considerably longer that was first anticipated and that getting the steroid dosage right is no easy feat.

I have tried to explain in my reply to HeronNS as to why my consultant might be taking a short term approach in the first instance. He knows the normal steroid regime is at least 18 months because he discussed it with me.

I have a lot of faith in my Endo - my health issues are complex and without his treatment and care over the last ten years I do not think I would still be around.

For my part, it feels worth trying what he suggests. I won't be any worse off than where I am now! Thanks to you again - Kathy

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The main thing is the support you trust from endo. 🌻

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I think the system you have found yourself in will disadvantage people with conditions like ours. I can envisage not getting past the first post. Do you think that your new symptoms fit the PMR picture of bilateral pains and stiffness particularly in the mornings?

I agree with your other respondents too. They ought to try you on 15 mgs to see if you get the Pred miracle, which tends to be the main diagnostic indicator. PMR lasts between 4-6 years on average according to the latest information. Careful , slow, reduction in the original dose until you reach a dose that is optimal for relief of symptoms is the “ expert” advice. Basically you’ve suffered enough and we don’t want to see you suffer unnecessarily, if you do indeed have PMR - caught early - or not.

Let us know how you get on.

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Thank you SheffieldJane for your reply. I do indeed have bilateral hip and shoulder joint & muscle pain which is distinctly different from the pain I experience with ME.

ME joint and muscle pain is transient, variable and will often subside with rest. Also, the muscle pain is actually muscle fatigue and again different from the muscle soreness I have now.

The pain I have now does not subside with rest. In fact, it's worse if I'm lying down. However, I do not have the classic symptom of morning stiffness.

As i have said above to Poopadoop - I have a lot of faith in my Endo - my health issues are complex and without his treatment and care over the last ten years I do not think I would still be around.

For my part, it feels worth trying what he suggests. I won't be any worse off than where I am now! Thanks to you again SheffieldJane - Kathy

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My mother had ME and they do say auto immune can run in families. I have more pain lying down but that may be because I am not thinking of anything else! When I was diagnosed my rheumie kept insisting I had morning stiffness, as far as I was concerned I just had excruciating pain.

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Hello again - yes there is some indication that ME & auto-immune issues can run in families. I am pleased to say that none of my immediate family suffer from ME.

However, I do believe that if you have one auto-immune disease the odds are stacked against you contracting another.

My excruciating pain period does seem to have passed - meaning I am whimpering less and not reduced to tears so much!

I feel a bit of a failure not meeting the "stiffness" criteria but quite a few people on this forum have said it was not a feature of their PMR symptoms either.

Many thanks to you - Kathy

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Having faith in your doctor is gold dust. I am glad you have that. You must have a story to tell living with ME for so long. Glad to meet you Pipalina. I think I recognise your name, but if this is a first post, a warm welcome. Stick with us and let us know what happens. I am sure you have a lot to teach us about living with chronic pain. I wonder what happened to trigger PMR. For a significant number of us there was some sort of trauma, prolonged stress or bereavement. For others it was acute illness or an operation. For others it remains one of life’s mysteries. Thankfully your Endocrinologist and you spotted something very different joining the party as it were. 🌺

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I hope your faith in your endo is rewarded. But if he thinks it is really PMR then a starting dose of 10mg is low and 10 weeks is nowhere near long enough. For a start, since 10mg is well below the recommended range then it is perfectly possible the PMR won't respond at all - but it will not be because it isn't PMR but simply because the dose wasn't adequate in the first place. So it may prove nothing,

If it is a response to the mesh implant - then I don't see the inflammation disappearing any time soon. But I will be delighted to be proven wrong.

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Hello again PMRpro. I completely understand the logic of what you say in terms of the low dosage and that it might not be enough to have a meaningful effect upon my symptoms.

I am sure that if I don't have a reasonable response that my Endo may well adjust the dosage upwards. The inflammatory response to the mesh implant has significantly lessened with the passage of time - but it is still there in the background.

I've taken my first 10mgs this morning and the only noticeable effect so far has been extremely uncomfortable indigestion - all day long. I'm hoping this large glass of wine I have just poured will distract me from it!

Thanks again for your input - Kathy

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Try some yoghurt with the pred. If that doesn't help - get ranitidine/Zantac from the pharmacy.

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Hi pipalina. Sorry to hear you have pmr to add to your list of conditions. I too have ME and it's been around for nearly 30yrs and yes it is very different to pmr, altho when it first started I was a bit confused as it was similar with feeling ill, sweats and exhaustion. I too have had other endo conditions in the past. I was started on 15mg and got relief within a day or two, it later progressed to GCA. It's great your endo is in your corner and as you rightly say he has all the facts regarding your other complex health issues. I hope it goes well and if you get relief on as little as 10mg (some don't) then maybe he can monitor your other conditions and you can continue on the steroids for as long as you need them. All the best cc 🤗

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Hello Carrollee - you seem to have a fair few health issues to contend with yourself! I hope all your symptoms in terms of PMR & GCA are under control - from what I've read on the forum it does seem as though many people struggle for a long time before they find the optimum dosage to get everything under control.

I think a diagnosis of PMR is pretty shocking but to be diagnosed with GCA must really take some coming to terms with.

I'm sorry to hear that you have also had ME for such a long time: it's a very testing illness indeed in terms of the array of symptoms and the vagaries of the disease itself that taunt and tease.

But my view has always been that there's ME and there's life and just sometimes I chose life despite knowing there will be a pay back - but sometimes it's worth the pay back for the sheer enjoyment or achievement of the moment!

I might not get out much but when I do I'm the life and soul of the party so to speak!

Like you, when I first started experiencing PMR type symptoms, I thought they were just another manifestation of the vagaries of ME. I think it's a common fault that us long term sufferers think everything that's wrong with us must be ME related. So, sometimes it takes a little while to realise that there is actually something else going on.

Despite having ME for a very long time and I would say I was a moderate to severe sufferer i have experienced more complication health wise since i was diagnosed with hypothyroidism in 2008/9. Do you have thyroid problems?

All the very best to you too - Kathy x

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Me again. I agree with all the above sentiments, sometimes you just have to throw pacing to the wind and splash out on life. Yes I had thyroid problems, my first auto immune experience was Graves' disease and there are a few on the site with it as well. When that started I just blamed the ME untill I couldn't swallow at all with the size of the goitre! I got rid of it in 18 months but it wasn't a good experience and I now try to have a bit of control as to whats happening with me and what drugs are being pushed on me "just in case". I have a sick father and a not so well step mother so sometimes you just have to get on and care for loved ones and hope for the best with your own health in the process. All the best cc

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My goodness, Carrollee, you really do have a lot to contend with and I wish you nothing but the best! Kathy x

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