Can anyone recommend a good specialist who can help?

Hello

I am writing this on behalf of my wife who is 59 and has been suffering with frozen shoulder and then polymyalgai for 2 years (although recent blood tests have been negative).

After reading lots of useful discussions on this forum, I suspect my wife (who is scared of the steroids) has probably come off them too quickly and relapsed as she has the same symptoms as 12 months ago and a few more like discomfort in her jaw, ear, knee etc.

I would like to help her find a specialist who can:-

- confirm and diagnose her condition (I presume she has polymyalgia despite the blood tests)

- give clear advice on the steroid options (I suspect different steroids have different side effects for different patients so maybe she needs to trial?)

- draw up a plan to help her live with the condition and optimise any chances she has of ever ridding herself of it

Sounds simple, but we did speak to a specialist a few months ago and whilst he was very sympathetic and appeared to be knowledgeable, we didn't get the answers to the above.

We live in Beaconsfield (25 miles NW of London) so can easily get to places such as London, Oxford, Watford, Reading etc.

Can anyone recommend a good specialist who might be able to give us the direction/guidance we need?

Hello nsj9 and I'm sorry to hear your worries that your wife may be succumbing to PMR for the second time. Unfortunately it is not unknown for relapses to occur and a few of us who post here are, in fact, in touch on another forum with a couple of ladies who have gone through it for the second time - the good news is that both of them have also just recovered for the second time!

Importantly, with the extra symptoms you mention this time of jaw and ear discomfort, this does raise the possibility of your wife also showing signs of having Giant Cell Arteritis, a linked condition to PMR, and one which must be treated as a medical emergency as this carries a risk of loss of eyesight. Certainly if she experiences any sign of visual disturbances such as pain or blurriness, she would be wise to go immediately to a good ophthalmologist or to A&E. A diagnosis of GCA needs immediate treatment with very high dose steroids (at least 40-60mgs).

GCA is often diagnosed through a temporal artery biopsy where a tiny sample is taken from the side of the temple area and studied for enlarged cells. It isn't 100% reliable in that occasionally the large cells can escape the tiny section taken. Yes, you are right, it is possible for someone to have both conditions in spite of normal ESR and CRP blood test markers, and a short trial of Prednisolone is often used as a diagnostic tool in the absence of raised markers in the blood. In the absence of a cause and cure for these conditions, Prednisolone remains the most tried and tested treatment for bringing the inflammation under control.

I am located in Surrey and have an excellent rheumatologist, who has a special interest in PMR/GCA, but,as you say you re prepared to travel there are a couple of experts in the field of PMR/GCA, one in Bristol and the other in Southend, both are professors and both involved in research into these linked conditions. We will be able to send you more details if this helps via a personal message.

I do wish your wife well - she is blessed at least to have someone as helpful as you.

Hello and welcome.

First of all - although you haven't said how long it is since she stopped taking them, if she came off steroids in less than 12 months this is almost certainly a return of the PMR symptoms. Past experience has shown that about 25% do manage to discontinue pred within that sort of period - but remain at a higher risk of a relapse later. The pred doesn't cure the underlying autoimmune disease that gives rise to the symptoms. They allow you to manage you symptoms to allow a decent quality of life.

Secondly - it concerns me that you mention jaw discomfort as that is a symptom of giant cell arteritis - where there is a risk of loss of vision and high dosed pred is the only option, is associated with PMR and you are at a higher risk of developing it if you have PMR, more so if it is untreated.

I'm not sure we are allowed to name people but I can tell you that the biggest research groups are in Southend and Bristol. Follow this link to the top of this forum and you will find a link to a paper about the diagnosis and treatment of PMR and GCA from the Bristol group as well as a support site.

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

In response to your other points, I think you are being over optimistic but I'll do my best.

There is no way to 100% diagnose PMR - it is a diagnosis of exclusion and - as you can see from the Quick and Kirwan paper - the response to 15mg of pred can be used to differentiate patients with simple PMR (as opposed to secondary to something else which is also a possibility).

There are few options with regard to corticosteroid. Which you use depends on the length of effect you want and how it is to be used longterm. In PMR the choice is prednisolone in the UK as its effect lasts 12-36 hours (varies with person) and for most people a single daily dose works well. Other corticosteroids have a shorter halflife of effect so have to be taken more frequently.

It comes as simple cheapish white tablets or as more expensive enteric coated pills - they have advantages and disadvantages but both are used. I tried both, there was no difference in anything but I didn't have much in the way of sideeffects, more transfer of weight than weight gain! I have also had Medrol (methyl prednisolone) after I moved here to Italy - didn't suit me at all and the side effects I had were most unpleasant - but it is the standard here and it seems few patients have problems like I did. I am now on Lodotra, a form of prednisone (the difference is prednisolone is the active form, prednisone has to be processed by the liver to become active) which has been approved for use for morning stiffness in rheumatoid arthritis. It has a special outer coating, you take it at 10pm and it is released in the early morning after a 4 hour delay. A trial is being done to see if it achieves anything in PMR, it is already commonly used in its home country of Germany. Personally I think it is brilliant. However, the bottom line is, as you might expect, that it is expensive. Plain pred probably costs the NHS a few quid a month, Lodotra costs from £25 to £75 depending on the dose you are on - you can't cut the tablets so you have to combine 5, 2 and 1 mg tablets to get the dose as you reduce. The only times it is £25 is when you are on 5, 2 or 1mg - the rest of the time it is £50 or £75. Not expensive if you get a better QOL I suppose - but if every patient in the UK on pred was given Lodotra it would add a lot to the practice drug budget.

So no - no option to trial unless you can persuade your doctor to provide enteric coated, Medol or Lodotra or you are happy to pay for it yourself. The basic effect is the same. It is some form of prednisolone she needs.

"Draw up a plan to help her life with condition" - that is a bit naive if you don't mind me saying so. Unfortunately, no consultant has the time to spend with every patient to discuss that, unless you are paying through the nose for a private session and even then we know of people who went privately and had less friendly or polite treatment than from over-worked NHS people. How to live with PMR is firstly to take the pred and find the optimal dose by reducing VERY slowly to find the lowest dose that manages the symptoms to an acceptable level, secondly to arm yourself with reliable information from forums like this one and the other links you will find in the link I gave you and, if there is one, to join a support group to find out from others how they deal with it. Of course you didn't get those answers from a consultant - they've mostly never had it themselves and how you live day to day is less their job than identifying you haven't got something far more serious. There are some who believe once you are taking pred "everything is back to normal" - which isn't true in many cases.

If that sounds harsh or unsympathetic I'm sorry - but PMR is not life-threatening or life-shortening. It is life-altering to use the modern term but I don't imagine my grandfather and great aunt who almost certainly had PMR expected or even got pred to deal with their "rheumatics" - in those days it was accepted as part of growing old. By over 75 something like half of people have PMR. I have had PMR since I was 51, over 9 years. For the first 5 years it wasn't diagnosed, I didn't tick the boxes, I was "too young" and my bloods were "normal". When it suddenly got far worse it was the same - I found the diagnosis but the rheumy didn't believe me or listen to my story of the 70+% improvement in symptoms 6 hours after taking my first pred dose. The GP was happy to accept the evidence and I've been on some form of pred ever since, nearly 5 years. There are things I can't manage but frankly, at 61, I know a lot of others who are worse off than me. Most of the time I have continued to ski - not as much or as hard as some neighbours and not at all last year - but that was something else. I'm intent on going this year. At present I feel better than I have for several years - on 6mg/day pred. If that's what it takes - that's fine. My bone density is the same as it was 4 years ago pre-pred. I've lost weight, now I can move and walk a few miles without feeling I am dying of exhaustion. I restrict the housework I do - sometimes I get someone in to do a bit - and I started to cook differently so I didn't spend hours standing.

You can't "rid yourself" of it. It is an autoimmune condition and it may go into remission sooner or later, it probably does for most people, all you can do until then is modify your lifestyle to accommodate the problems and keep taking the pred. And it is a case of god helping those who help themselves. I've given you links for the PMR and GCA northeast support site and the associated forum. The site has medical and other information - all checked and monitored by experts including medics. That, I suppose is what you want but it won't come directly from the horses mouth - the site speaks for them. The forum is a gathering of people with personal experience who have advice and tips and sympathy on offer for you to take advantage of. Social media can be a wonderful thing.

We frequently have people say they have learnt more from us than from their doctors - but we have all walked the walk and have time and expertise to help you. With that knowledge you have the power to help yourselves and live as well as possible. There is no simple answer - each of us is different both in our PMR and also in how we respond to the treatment. The cause is an autoimmune disorder - no one knows why or how it works just how to cope with medication - but then it is up to us.

I hope this has helped you understand the source of your frustration - and I have pointed you towards help. I (and others) will happily try to answer your questions if you still have any after doing your homework and reading what is already on offer on the northeast site (you will!). If you visit the forum there you will also find some info about support groups - there is an excellent one which meets in Chertsey and is run by MrsO who also posts on here so I'm sure she'll provide information about that.

Keep in touch now you have found us - we'll do our best to guide you on your first steps in this new lifestyle. It needn't affect thing too much - as long as you moderate your expectations. Climbing Kilimanjaro will have to be postponed for now

Eileen

Hi there, I am 65 and was diagnosed with PMR 2 yrs ago. Can't help with the specailist, I'm in Notts. My specialist only ever oversaw my GPs treatment anyway. I started in Nov 2011 with 15mg of prednisolone, and then over 2yrs have been weaned off of them by reducing 1mg at a time. It is very important that you don't miss taking the steroids. It is also important thet these are backed up with Alendronic acid once a week, and chewable calcium, in order to avoid osteoperosis etc.

I stopped the Prednisolone altogether in October this year, and have just suffered a flare up. Although, the blood tests are not showing a problem. My GP is playing safe, and has put me back on predisolone, but as the symptoms are not as bad as first time, he hopes to reduce the dose more rapidly

Hi Alanh and welcome to you too!

For the benefit of anyone reading this can I just add a codicil to your comment about alendronic acid.

It is not essential, it should be given on the basis of a dexascan done in the first 3 or 4 months of taking pred and repeated after 2 years. My bone density has not changed in four and a half years of pred, much of the time at over 10mg/day and for a while even higher. I took AA 4 times - I hated it. I'm relatively young but one lady of 75 and another of 80 (amongst others) have also never used AA and have superb bone density readings.

AA is NOT the innocent substance many doctors believe it is on the basis of the advertising from the manufacturers. There are cases where it must not be used - any history of gastric problems for example - but many doctors are totally unaware of this. What is essential are the calcium/vit D supplements. Vitamin D lvels should also be checked, whether or not you are taking AA. Low vit D levels can cause a syndrome similar to PMR and exacerbate PMR. If your vit D level is low, then AA will do no good at all, vit D is essential for the body to incorporate calcium into the bones.

I live in Italy - here we are given pred and calcium, nothing else. But we are monitored - if your bone density is OK, you do not necessarily need AA. Less than half of patients on pred develop osteoporosis.

I do hope this flare is a temporary blip Alan - but every "batch" of PMR is different, even in the same patient. And rapid reduction isn't a given just because the symptoms don't seem as bad - and rapid reduction is the primary cause of flares. I can't emphasise enough: pred does not cure the cause of this disease, it merely makes life more worth living.

Eileen

Hi Alan

I'm so sorry to hear you've just been diagnosed again so soon after getting off Pred in October - perhaps if you reduced by 1mg every month whilst at the very low doses that was just too much too soon. From the 5mg point I reduced in just 0.5mg steps over a longer period until I reached zero Pred.

Hopefully, as you have got in fairly quickly with the Pred again your GP's plans to reduce you back down a little faster will be successful, BUT you would be wise to slow it down at the lower levels this time.

As for Alendronic Acid, you really need to get the need for this backed up by a DEXA scan - if your bone density is found to be within the normal range, then you do not need to put your body through the side effect risk of this drug.

However calcium plus Vit D is recommended although it is wise to get your Vit D levels checked through a simple blood test. Many of us have been found to be deficient and this deficiency in itself can cause pain in similar areas to PMR, as well as many other nasties. If you are deficient, then you will need a short course of high dose Vit D3 (Colecalciferol) to bring your levels up to normal - the calcium plus Vit D pill alone won't do this.

Good luck this time around!

Hello,

Thank you to everyone who took the time to reply and comment, and especially Mrs O who willingly took a call from us. I just wanted to give an update.

We spoke to 2 GPs and an eye specialist who were confident my wife did not have GCA (which was a big concern because of her jaw/ear ache) but we also decided to request a consultation with whom we believed were the recommended top specialists. Fortunately we were offered a cancellation last night to visit the specialist in Southend today so my wife obviously cancelled everything and travelled 2-3 hours to attend.

He was confident my wife does not have GCA and offered alot of guidance on next steps we should take which included a range of different tests early February once the steriod dose is down below 7mg. Its a plan for a plan, and we feel confident that after the February tests, we will get the correct guidance and longer term medication plan in place.

There is hope. Thank you again.

Hello again nsj

It's good of you to come back and update us and I'm sure it was well worth "cancelling everything" just to get peace of mind from an expert. It did seem apparent when we spoke that your wife's jaw discomfort wasn't really symptomatic of GCA in that it would suddenly occur during the night, whereas the classic jaw pain of GCA is generally noticeable on chewing.

In your wife's case, and in the absence of suspected GCA, it seems as though the Prof has advised a fairly rapid reduction from the high dose if he is expecting her to be below 7mg by early February. Do bear in mind that around 7.5mg the dose equates to the amount of natural steroid our bodies produce when well, so wise to really slow the reductions down at that stage to allow the body's adrenal glands to get up to speed again with that natural production, having been suppressed by the higher dose steroids.

Hopefully, your wife is already feeling much better on the PMR front following recommencing the steroid treatment and I do hope she continues to improve and that the results of the "range of different tests early February" turn out well. Good luck and do keep in touch about her progress. Meanwhile, best wishes for a happy and peaceful Christmas to you both.

MrsO

Hi Mrs O, can you please tell me if anyone in the uk is taking  Lodotra for PMR, have not started preds and am worried about taking them, but would like to try Lodotra, but maybe it is the same as enteric coated modified release preds, I have defernatery at last been diagnosed with PMR after 2 years, but my rheumatologist does not want to start me on them as he only uses them for RA, I am willing to pay for them. Thank you.

Hi Vanessa

I'm not aware of anyone in the UK who is taking Lodotra for PMR.  As you say you have now definitely been diagnosed with PMR, then you would be wise to try and put your worries to one side and start taking Prednisolone - if you don't get the inflammation under control you run the risk of succumbing to even more serious illnesses than PMR, not least GCA and it's risk to eyesight.  Plus, if you are taking Prednisolone, you will get lots of helpful advice from many other PMR sufferers in the UK from their experiences with this medication. 

Hi Vanessa, I live in UK and have been taking Lodotra since January this year having been diagnosed with PMR in November 2013.  Lodotra is the only modified release pred available in this country that I know of and as your rheumy says it is licensed for use in RA.  You take the tablets at 10pm but the pred is not released until 4 or so hours later. I find that they work well for me, especially being able to get up in the morning, with minimal discomfort, and get on with life instead of waiting for a morning dose of pred to kick in.  I have to pay for them because they are too expensive for gps to prescribe, but for me they are well worth it.  Good luck and I hope you feel better soon,

hi Barbara, thank you so much for that, am only going to start on preds next week for PMR, asked my rheumy if I could be put on Lodotra and he said he would not be happy as he was aware trat they are only forRA, I am happy to pay for them as I feel much happier because they are modified release and can find no other, did your rheumy put you on them, and is he from Southend?, you are the only person who has responded to me, does that mean you are the only person taking them? thank you so much.

Hi Vanessa, as far as I know I think I might be the only one in the Uk taking Lodotra for PMR.  I know that Eileen H takes it (she lives in Italy).  When I first heard about Lodotra (from Eileen H) I researched it myself on the internet and then discussed it with my gp. He couldn't prescribe it on the NHS because of the cost but was happy enough to write a private prescription.  I don't understand your rheumy's problem because it is still prednisone the only difference being that you take it at 10pm and it releases 4 or so hours later (just when its most needed) - it's not as though you are asking for a completely different drug. If you really want to try it stick to your guns and tell them you are prepared to pay for it. Do you know how much it costs in the UK?

was told about 100 pounds  a month, dont drink or smoke so quite happy to pay, why do you think it is not used in uk, know it is used in the USA under adifferent name. where in the uk do you live?

I live in sunny Manchester.I think it's not used in the UK because of cost although they do query the efficacy in PMR, but as they seem to abandoned trials I'm not sure how they came to that conclusion.  According to Eileen it's used in Germany as well.  It's less expensive elsewhere in the world but in the UK I find Boots the cheapest at £121 for a hundred tablets, the cost is the same for 5mg 2mg and 1mg. Like you I don't smoke or drink and feel it is money well spent.

It isn't used in the UK because approval for use in PMR hasn't been sought - that is a pre-requisite for any medication to be used for a specific use. To put it very simply, trials must be carried out to show it works and the drug company must then apply for approval. It is a long-winded and expensive process so they need to have the backing of specialists who give them the assurance it is likely to be used and a market will be there. Pharmaceutical companies aren't charitable organisations and they won't put in the effort if they aren't confident they can make money out of it. Marketing is pretty expensive too. It is easier once it is being used for something else - and in fact once that status is achieved the drug can be used "off label" as I think I've explained before. You have to find someone who will do that. As Barbara says, it is the same drug, just in a different formulation. I don't know that it is often USED in the USA for PMR - it  was only approved 2 years ago and not launched until the following December. Noone I know in the USA has been offered it, approval and being used are two different things and 18 months for a drug that isn't going to be perceived as being outstandingly different is not long.

The situation there is different - if you have the money and pay it yourself you can have anything you like in the USA! It is about 25 times the cost of ordinary non-coated pred, perhaps 17 times the cost of enteric coated pred - the NHS needs big evidence it is better to fund it. Not many people are treated for PMR privately.

If you google "drug development-technology lodotra for rheumatoid arthritis" you should get an article about the trials and their results. Take that to your GP and discuss it with him. 

Thank you for that find it very frustrating, am not under my doctor for this, it is up to my specialist, I really like him and know he has my best interest at heart, but because of my digestive problems blood presure and weight problems in my head I feel they would be better for me, see him on Tuesday so will have to wait and see.

You are not dependent on your specialist, you do not HAVE to be cared for by a specialist, many GPs manage PMR from the practice. I saw the consutant twice, he wasn't helpful and I went back to a different GP in my practice and remained with her until I moved here to Italy.You are going to have go "private" anyway - then it is your choice who you see. 

However - yes, at present it IS all in your head. You haven't tried the other pred options - and Lodotra is unlikely to be the first line choice but kept for patients who struggle with the other options. That was the case with me. I was fine with ordinary pred and enteric coated as well - but neither are available here. So my GP gave me Lodotra as the only other choice.

Hi Barbara, you live a long way away from me I live in the new forest, have been going to my doctor for 2 years saying I did not feel well and all my joints hurt and my ESR was raised, but only to 30, in the end he said I had depression, it was another specialist for a problem with my mouth who said he suspected I had PMR and should see a rheumatologist, he is lovely and has done all the correct things and I go to him on tuesday, I had sent him a message saying could I go on   Lodotra, as had read about it and knew  Eileen H was on it, she is so helpful! he said he wouldnot be happy to do that as it was for RA, not giving up, I contacted prof        Dasguptas secretary in Southend who I have been told is the top guy for PMR and asked his opinion, the answer I received was that approval for use for PMR has not been approved in this country, although it is approved in europe and the USA. he uses it in the uk for people who do not tollerate ordinary preds.

Hi Vanessa.  I saw my rheumy 4 times altogether (now just see gp) and was put on the enteric coated pred initially and it was ok but  it was after reading Eileen's experience with Lodotra that I decided to try it (you're right Eileen is a mine of information for all of us). For me the main difference has been being able to get up in the morning, hop in the shower and be ready for the day without waiting for a breakfast dose of pred to kick in.  So I didn't have a problem with the enteric coated pred but just wanted a better quality of life.

As you are prepared to pay for what is the same drug I don't see how your rheumy can refuse but if he does you can always ask your gp.

It will be good to know how you get on