Is this my new normal?

It needs to be high enough a dose before saying it doesn't work - and 10mg is nowhere near high enough a dose to say that. Up to 20mg should be the max but given that even 1mg can make the difference between symptoms being managed well and not being managed at all - that 10mg needs to be added to first.

I hear what you say Eileen, but I think that is for the doctor to decide, he/she must have had a reason to prescribe the lower dose and Annie needs to discuss why with him.

Hello Elaine, the thing is if you are diagnosed with PMR by excluding all other medical conditions then the standard initial dose of preds is 15mgs. Some patients could possibly be fine with 10mgs however the standard starting dose is 15mgs.

i don't know where you live but in England where PMR and GCA is now part of the core medical subjects taught to medical students there is still a huge number of older clinicians that have either never heard of the conditions, never had a patient with either condition and some that simply have no idea how to best treat you with it, and worse still even when they don't know how to treat it are totally unwilling to even look up the Bristol PMR plan to educate themselves about the condition and how its treatment should be approached.

that is where websites like this come in handy because it educates us and gives us an insight as to whether we in turn are receiving good clinical practice.

prior to my diagnosis, I was 52 at the time, my GP even at the point where my husband had to almost carry me into the surgery could not for the life of her think what could be wrong with me. I had to request a referral and within 5 minutes my rheumatologist diagnosed me with PMR. I have since changed surgeries and receive fabulous care from both my GP and rheumatologist. I dread to think where I would be now if I had placed all my trust in that particular GP that simply had no clue. Regards, tina

Hi tina, I actually agree with both you and Eileen. My GP was convinced I had PMR and put me on Pred. It did no good. A short while after his diagnosis he retired so my next visit to the surgery meant I saw another GP and she was appalled at how badly I was doing as I should have been at least a little better. She said she doubted it was PMR and did further investigation. She was right. I can only thank my lucky stars that the previous GP retired or I would be still on the pred and trying to come off. I live in the UK. Because of my experience I am wary and don't think it is for us on this forum to tell anyone to increase their meds. Even seeing a different GP at the surgery attended could give a different result. Maybe that is an option.

He almost certainly started with 10mg because he doesn't know the best practice recommendations. What I said in my reply to you was is that if it hasn't responded to 10mg then that isn't a ground for saying it isn't PMR - you can't assume it isn't PMR if you have given the patient only about half of the recommended dose.

No - we don't tell people to "take more", we said that if it is PMR she would probably do better to start on a higher dose and - let's face it - the only way to do that is to discuss it with the doctor who gave the low dose in the first place. 

The Bristol rheumatology group wrote a paper to help GPs diagnose and manage PMR better - most GPs have never read it. I have seen the most amazing range of responses from GPs to patients with absolutely classical symptoms - they didn't even consider PMR. One criterion to diagnose PMR is a dramatic 70% global improvement in symptoms to a moderate dose of pred, 15-20mg. Explained very clearly in the medical literature. It also explains that if there isn't that dramatic response then you need to go back to the drawing board and consider something else. It's called clinical skills - but if the doctor hasn't started off in the right way s/he will get the wrong result as happened with you.

I spent 5 years with PMR because no-one I saw recognised it and I saw at least 3 different doctors at one time or another - and yes, had I seen another doctor in the practice she would probably have recognised it. But she was on maternity leave half the time and only worked part time anyway. She was also the one person in that practice who was perfectly happy to use google to find information - and had her colleagues done the same they might have improved their standard of care. In fact she did teach some of the others how to do that!

We don't tell people anything about dose here that isn't part of the guidelines - the British Society of Rheumatologists have a set of guidelines, approved the world over. You might be surprised how many rheumatologists have blatantly never even looked over them, never mind read them in detail. We won't go into GPs - they don't read their communications about new guidelines either - mostly because they don't have the time. The recommended starting dose for managing PMR is 15mg - and while a dose of 10mg may be enough for some people it is not enough to clear out the existing inflammation for the majority of patients, especially ones who have had PMR for any length of time.

We aim to supply factual information - and provide the justification from the medical literature for the education of healthcare professionals as well patients. And we tell people to make sure the GP did at least some of the exclusion tests as well. Anyone who is on 15mg pred and has only a partial response needs to be tried on 20mg. If that doesn't work then a rethink is needed - but there isn't a lot of point having a rethink when the patient hasn't been treated properly for the illness in question to start with.

 

"let's face it - the only way to do that is to discuss it with the doctor who gave the low dose in the first place"

So we are saying the same thing. It needs to be discussed with her GP.

No offense is meant here Eileen. I was given these horrible steroids incorrectly in the first place. I am very wary as they are so hard to come off. That is my concern for Annie.

Exactly - you have a choice of discussing it with the GP, putting your side of the argument, or you find a different GP and try them. However - you can't know you need to do that without being told this approach isn't really best practice and that may be why it isn't working. And where to find the info to back up your plea. I never take offence (and no, I know I'm far from perfect).

If you are struggling to reduce because of steroid withdrawal problems then try reducing in much smaller steps . The usual suggestions for reductions from most doctors are based on having been on pred for just up to 6 weeks - you can do a 6 week taper of 15/10/5, each for 2 weeks with no bother at all. Longer than that and the reduction can be very uncomfortable. REduce in 1mg steps ever 2 weeks and it is likely to be easier - if it isn't, 1/2mg at a time. But don't try big steps - it isn't worth it.

Tina, your GP sounds like the one I had before diagnosis of PMR. I had been told originally I had a virus by another GP. I was in agony and told him the symptoms I had of shoulder pain and hip pain, the GP then checked my temperature, ears, throat, BP and listened to my heart. I asked him if it could be PMR and he looked ar me as if I had asked him had I got rabes. He then said it was nothing serious and it would go away. I think the GP in question was fired a few weeks later as he disappeared and anything relating to him disappeared too. His name was whitewashed out and when I asked the receptionist she changed the subject. 

Sounds like me. I saw a dr in the same practice at the beginning of July, and told her it might be PMR. She ran a bunch of tests, but not the right ones. A few weeks later I insisted they run the right tests, and when they came back elevated, she told me to take an aspirin a day. And then it took me a couple of more weeks before I could see my regular dr, who put me on the pred. So she could have prevented about six weeks of misery. Oh, by the way, my dr upped my pred from 10 to 15mg. I'm looking forward to getting my mornings back.

Annie, Are things now much better on the higher dose of pred? I do hope so.  I went for several months of pain having been told I had a virus to start with. They even took blood tests. When I was finally diagnosed by a rheumatologist which I went to privately in desperation my ESR and CRP were off the scale. One really begins to wonder sometimes. 

I just added the higher dose, so we'll see in the next few days. My sed rate was slightly high, but my CRP was really high, and nothing was done until I got on the phone in tears and demanded to see someone. The receptionist even told me not to yell at her.  I still had to wait two weeks. I was ready to drive my car into the river. They don't seem to realize how painful this disease is. Too bad I don't have a famous name, i wouldn't have had to wait a day. Haha.

Hello anniecurd and Ptolemy, this is just one thread and yet the 3 of us went through a lot to get a proper diagnosis. I went for almost 4 months undiagnosed. In the end I had to sleep alone as I couldn't bare to have my husband sharing the same bed, that's how much pain I was in. I was lucky if in the last month I had 2 hours sleep a night.my rubbish GP told me to up my ibuprofen even when I told her that they did nothing for the pain and stiffness, she then prescribed gabapantin, again no response. After a week of those tablets I went to see her again and she asked me why I simply hadn't upped the dose? When I replied that I wasn't a clinician and I didn't know I could she tutted. When she told me that for the life of her she couldn't think what could be wrong with me, I screamed at her and said, well if you don't know what's wrong with me bloody well refer me to someone who will!

anniecurd you say that you were so desperate you wanted to drive your car into a river, well that's how I felt to. I sorted out my will, and batch cooked and froze meals so that if I died then my husband would have plenty to eat in the short term. I can laugh about it now, how dramatic was I?! But at the time the desperation one feels is overwhelming.

well I'm now down to 7.5 and so far so good. I'm almost totally pain free and suffer few side effects, I think I've got off pretty light when I read some of my fellow sufferers stories. I hope you both are chugging along slowly but surely and I hope anniecurd the additional 5mgs makes a difference. All the best, tina

So sad that in this "modern" world of medicine that anyone

has to go through this.   I guess I should get on my knees

and do some thanking for my Primary guy who watched,

me try to get up out of a chair (struggled) and did a sed

rate right then.  It was 92....... I'm 78 and would rather

not spend what time I have left in pain.....I hope the relief

continues as we all try to cope with this disease.

Hello Faye, how right you are. I also had to have my bloods done privately as the surgery didn't consider a 6 week wait a long  time for non urgent bloods! Lucky I had them done as when I went to see the rheumatologist he had blood results to refer to and if I'd waited the full 6 weeks he would have had nothing to refer to. When I told him my story he was disgusted and wrote on my record that he wanted me to have bloods done every 6 weeks. He is absolutely fantastic and has treated me pretty much in line with the Bristol pmr plan and then following a flare attempting to reduce from 9-8mgs agreed, after I requested, for me to now reduce by the dead slow and almost stop method. As for my new Dr surgery, they are great. I am very lucky. Faye I do hope that you also are improving even if it's a slow process, hopefully we'll all get there in the end. Regards, tina

It took 5 years for me - and, having spent many hours on the internet, I took the dx to my GP. Who still um'd and ah'd and referred me to a rheumy rather than do anything himself. He'd have been better telling me to see his colleague as the rheumy was also unable to recognise textbook PMR - other than being "too young" at (by then) 57 with normal bloods. But he DID "allow" me to have 6 weeks of pred - 15mg worked in under 6 hours but he ignored that bit of the jigsaw.

I am so glad my GP referred me to rheumatologist when after 5years of painkillers I was on max dose. (my symptoms started at 40).Rheumatologist diagnosed PMRwhen I was 45.12years on am on 4th flare up and back under rheumatologist as can no longer take steroids.Unluckily my PMR has never gone completely and was told it never would go that I would always have wuiet periods followed by flare ups (also have asthma and allergies so basically my immune system is a tad too active)

You were very lucky in your rheumy, others haven't been so lucky - but it is appalling that the GP waited that long, handing out painkillers at a high dose, before referring you. There was actually a high chance it could be RA and treatment for that is best started immediately. No doubt your rheumatoid factor was negative? Not that that means much. Just a piece in the jigsaw.

Sorry did I say painkillers I should have said NSAID (mind you not allowed those anymore ss they did not agree with my kidneys).Yes my rheumatoid factor test was negative but my ESR was high-infact GP got it redone as he thought there might have been an error but it came back the same.When GP ran out of ideas he did refer me and care since then has been excellent. Have just been started on methotrexate so just have to keep om tramodol and paracetamol till it kicks in

In my book the terms NSAIDs and painkillers are pretty much interchangable - but they are also serious drugs with serious side-effects as you have found. Even ibuprofen (NSAID) and paracetamol (not) are both available OTC but both can quite quickly make you seriously ill even at the recommended doses. 

The purpose of a GP is to recognise what they can manage themselves and send you an expert when they aren't able. If they don't find an answer fairly fast then they need to ask someone else for advice. Too many don't know where to draw the line unfortunately. 

Hi NSAID's have a degree of anti inflammatory action whereas straightforward painkillers eg paracetamol just trick the brain into thinking you are not in pain or atleast make it bearable

No I am not struggling anymore. This happened to me over a year ago. I am fine.

No I am not struggling. This happened to me more than a year ago. I am off them and I am absolutely fine.

I know the pharmacology - but my comment stands! I said "pretty much" and NSAIDs don't have one half the punch of other antiinflammatory drugs. They should never be used long term unless there is nothing else - and a GP doesn't have access to the armoury that a specialist does. Paracetamol is fairly useless even as a painkiller - plenty of evidence to back that up - and really isn't at all good for one's liver!

One lady was persuaded by her GP that it was fine to take the maximum dose on a permanent basis for the pain in her hands. Two months later he was in a flat panic because her liver enzymes were raised - enough to send her for an emergency liver scan. It was fine - stopping the paracetamol brought the liver enzymes back to normal. 

Hi Eileen,as a past pharmacist married to a current one I am always very careful with drugs especially with one's such as paracetamol that can be used quite easily for committing suicide due to their side effects. Hence my serious thought about methotrexate but since some of the potential fatal ones will be picked up in blood tests decided to try it.Good luck with your journey.

It's a shame others don't feel the same! Like me you do at least know about the potential problems - shame some of our erstwhile colleagues weren't as careful.

I do hope your journey is reasonably plain sailing too.

Thanks, me too just not to be in pain 24/7 will be a bonus though I must admit 10mg amitryptiline has improved my sleep quality without feeling like a zombie. Good job as I have to get up 4.40am to get our adult autistic son off to work mon-Fri as his factory shift starts at 6am.I am now an expert at early afternoon napping LOL

Gillian if you ever want to commit suicide don't use paracetamol!! A very nasty death. There was something on TV the other day about using charcoal to get rid of the toxicity for paracetamol overdoses, I then discovered that charcoal 'smoothies' are now being offered in London as a health drink. I am not going to try them, they probably cost a fortune anyway and taste of grit! 

I would never commit suicide,I do not have the "courage"to do so.Thank goodness I have never had depression;it must be awful.At one time a sure method without being revived was paracetamol plus distalgesic plus alcohol. (They no longer make distalgesic-one of the reasons it was discontinued was its propensity of being connected to suicides).At the time "normal" users were a tad disgruntled

Forty years ago I watched a young woman die who had tried that sure method after a Hogmanay row with her man. Bottle of vodka, lots of paracetamol and distalgesic. We had no idea how she woke up but she did - that amount of distalgesic should have been a fait accompli. It wasn't and she spent the next 6 weeks in ICU watching herself dying. She no longer wanted to but there was no way back.

I saw her every day. It was enough to put you off ever taking even one paracetamol again and anyone who suggests that the max dose over a long period is fine is told what I think. The line between max dose and overdose is too narrow. 

How awful for you.Trouble is when people do It as a cry for help they do not realise their actions can result in an unpleasant drawn out death-so sad

I remember many years ago my brother was product manager for distalgesic and there was something on TV announcing that it was the twenty seventh most popular way of killing yourself, I hate to say it but I think he was quite proud that his product had made it to tv. Mind you he says his method of committing suicide is a bottle of whisky and a gun. 

As Dorothy Parker said:

Razors pain you,

Rivers are damp,

Acids stain you,

And drugs cause cramp.

Guns aren't lawful,

Nooses give,

Gas smells awful.

You might as well live.”

The trouble with that is that if you have drunk too much you might miss.

If we stay here I shall take a mobility scooter out on a cold night - overnight at -15C (or colder) should do the trick...

 

I think my brother was going to have a party with lots of people with guns and bottles of whisky! A new take on Dignitas. The Romans used to ask a doctor along to cut their femoral artery while in a warm bath, which is supposed to be painless. 

It is a good job we are well balanced or else we would be making the news as a rash of suicides God forbid LOL

Hmm - hardly Dignitas though is it? Whatever you do it is the poor paramedics you have to feel sympathy for.

I suspect there is a small group of people here who have been far too close to the NHS in their lives...

Tarantino would probably approve!