Worried and confused

Hi, I was finally diagnosed a year ago my gp said I'd need to be off pred ASAP as it wasn't safe to take for long periods so I was up and down on my dosage which obviously I now realize didn't help any when I started with hip pain which didn't respond to the pred at all he referred me to rheumatology which is where the confusion starts, after being examined the consultant was fetched and his first words where to tell me there was no chance I had pmr as I was too young, I was almost 47, when I realized things where not right, he said I needed an 'urgent' mri which I'm having to wait 4 week for he's told me I need to be completely off pred for more blood tests when I'm next back to see him all this to rule out bone cancer!!! He admitted that pred is obviously helping whatever is wrong so he realizes as I drop and stop it my pain will obviously be back but I will have to put up with it!!.....iv been given morphine , both oral and tablet form, amatripraline and various other pain killers.....has anyone else been scared silly by the people we put our trust in but from what iv been reading lately really don't seem to know too much about pmr ?

18 Replies

  • "iv been given morphine , both oral and tablet form, amatripraline and various other pain killers"

    If what you have really is PMR the chances are that none of those will do a lot so don't worry when they don't. The fact that pred worked does suggest it isn't fibromyalgia - so the chances are the amitriptyline won't help a lot.

    Yes, lots of people have been scared to death by thoughtless doctors and what they have been told - or even worse, not told. But honestly there are good, kind and helpful doctors out there!

    I don't know - it's dangerous to manage a disorder with low doses of pred for a few years but it is fine to put someone on opiod painkillers that don't actually do much for the disorder in question. Sometimes I think they've gone mad!

    Never mind, it will all work out in the end. Do you have an appointment for your MRI yet?

  • 17th Feb for my mri , im a bit concerned about dropping off my pred for blood tests though , mainly for the pa in obviously but also it seems a bit quick to go from 20 to nothing in just 4 week

  • Have you heard of many cases under the age of 50?

  • A lot more than some docs will admit to! There are about a dozen on the various forums I think - and that is just a very small sample really.

    20mg to zero in 4 weeks is theoretically OK - but it does depend how long you have been on pred for so far. You shouldn't have any problems down to 10mg. Below 10mg do please be very aware of how you feel and if at any time you feel ill don't hesitate to go to the GP about it. You body has to start to make its own corticosteroid called cortisol again and after being on pred for more than a few weeks that may take a bit of time. Down to 7mg you are taking enough to cover that need, below your body has to join in. You may start to feel very tired and other things such as the effects of low blood pressure and faintness, salt craving, low blood sugar, nausea, abdominal pain and depression. This doesn't usually happen suddenly though - unless you just stopped taking your pred dose from one day to the next which you should never do.

    You have been down to 3mg before haven't you? If you were OK then then you will probably be OK this time but it always pays to be aware. Have you got a blue steroid card? You should carry one saying you have been on long term steroids but they are sometimes difficult to get hold of. If you haven't got one, write out what you take and keep it in your purse. If any of the feelings I've described start to happen go to your doctor. If it is at night or the weekend call 999 and tell them what is happening. It probably won't happen - but now you know what to do if it does.

    And if I were you I would make an appointment with your GP and tell him what you have been told to do about the pred and that you are a bit worried.

  • To be honest my gp really doesn't seem to know much about it at all, when I told him what the consultant said he as good as said 'we'll if thats what he wants you to do then he knows best'! Yes iv got the blue steroid card, im down to 6 mg now and already felt it when I picked my granddaughter up earlier and am not looking forward to washing my hair in morning. I'd not been warned about the symptoms of reducing them so thank you for that.

  • Hi, there are, as PMRpro says, more cases than doctors admit to. I'm 49, diagnosed year ago with GCA, have read about someone who was 37. Luckily my doc didn't dismiss it cos of my age. Heard few people amazed at how docs won't even consider it. You are not alone :-)))

  • I know a lady who has been on preds. for 15 years.

    She has rheumatoid probs.

    She is trying to get off them but having diff.

    She is OK taking them but realises she would be better off them.


  • I've been OK with taking Pred for 15 years too. The only difference is that I know I won't be coming off them any time soon - and I'm OK with that!

  • You see my gp originally said I needed to be off them ASAP as it wasn't safe to take them for too long and that usual length of time is about a year, then again he does say he's done more research on pmr quite a lot, he doesn't seem to know much about it at all!

  • Look up some of my posts - my situation is similar to yours i think. They are not sure it is ' only' pmr (for which we are on the young side) and need to rule out anything more sinister first. Pred does mask many conditions hence the need to reduce and wait for clinical signs to appear. Mine might be more of a vasculitis thing, and have a ct scan on 11 feb and next rheumy appt on mar 1st. I have been asked to get from 15mg to 7.5mg and currently on 10 and feeking ok.i also take codeine and nortriptyline for head pains which are pretty constant.

  • I am very lucky to not have headaches , im able to lead a relatively normal life, albeit in a lot of pain at times, in currently down to 6mg and I'm feeling it in my neck and shoulders already , my mri isn't until 17th Feb , iv not even been given my next appointment at rheumatology yet, they don't seem to be in any hurry at all to say how concerned the consultant said he was

  • Hi Donna,

    I was 46 when I developed Bilateral hip and shoulder pain, weight loss and fatigue. To cut a long story short 15 mg of prednisolone made a massive difference within 3 days and then I developed " classic " GCA type symptoms.

    It's only 3.5 years down the line that I have a diagnosis of spondyloarthropathy which can present with Polymyalgic symptoms especially in women. I eventually weaned myself of the pred ( which was effectively " masking " things ) and a CT/ PET helped in my diagnosis. I have recently started Infliximab infusions ( a biologic ) which are making a difference.

    i suppose what I am saying is keep an open mind. If your hip pain didn't respond to 20 mg of pred then there are a number of things that could be going on. I hope they will be doing a full auto immune blood screen as well ( ANCA, ANA etc ). I hope you get some answers soon.

  • Agree with this approach. Just had the letter from my rheumy to my gp following my first appointment in jan (referred september) - the rheumy could not believe how long it had taken for me to see him. My referral was marked 'routine' even though i was in agony with pmr symptoms - gp would not prescribe pred as my esr / crp was normal but l was taking morphine. A different gp thankfully gave me pred in early oct - this eliminated the pmr pain / stiffness and allowed me to come off morphine. The moral is that we need to push ourselves constantly as there does seem to be an indifference / disbelief from the medical community. If you feel that getting to 0 pred in 4 weeks is too fast be guided by your owm physical response - my understanding is that 7.5mg is more or less equivalent to normal cortisone production levels and hence a reasonable level to achieve at this stage if thats all you can manage.

  • That was crazy - that morphine was considered by your gp to be preferable to finding out if a week on pred would work to treat your pain.

  • Yes I literally pleaded with my gp to give me a 1 week trial of 15mg pred - I even took the royal society of physicians guidance stating that gps can do this. However he still refused and would only refer me to rheumatology - at the time unknown to me just marked routine.

  • hello Donna, this must be a very worrying time for you, but when i first presented myself at the gp oct 2013, she did a blood test that came back with raised esr and crp, i had pain in all the usual places, i couldn't raise my arms, etc and she still didn't know what could be wrong with me!!!!

    I don't know if this helps but i asked her if i had bone cancer and she said that with bone cancer it was very unusual to have pain at various places in the body and that usually the pain was localised to one area (one bone to begin with because it isn't normal to have bone cancer in all bones ) also when you touch the bone concerned the pain is excruciating, where as with pmr when i touched the areas concerned i didn't have pain, the pain only appeared when I moved.

    It is good that you are having an MRI as having it will eliminate other conditions.

    I wish you all the best and do let us know how you get on.

  • Thank you so much for that tina, the rational side of me tells me that im a typical pmr case and that the hip/groin pain in having at the minute , well I'm still convinced that I pulled or strained myself in some way, the initial ache in my hip started last September time which was I was referred to rheumatology but at that time my gp said to just be sure there wasn't anything arthritic going on too, then it was new year when I could hardly walk and the pain was excruciating , thats when I had my appointment so I think all that clouded their judgement a bit, it has got a lot better this last week which does make me feel better about things , it also hasn't hurt to touch the area so fingers crossed . Do you mind me asking how old you were when you started with your symptoms ?

  • Hello Donna, I was 52 when I first experienced pmr symptoms, not that I knew I had pmr. I was diagnosed 4 months later, December 2013. I am currently on 6mgs and have my next rheumy appointment this Friday. I think he will be happy with my progress. I suffered a flare pre Christmas 2014 and following that started the dead slow and almost stop reduction method which I like very much.

    I have blood tests every 3 months and at every test my gamma gt always comes back raised. Last time it was 365! Very worrying considering I have been diagnosed with non alcoholic fatty liver. I have lost 1 stone in weight over the last year so am disappointed that these readings are not reducing, however, the specialist seems unconcerned! I have a further 2 stone to lose so hope to see a marked improvement re my liver. I mention this because I know how worrying it is to have a medical problem that the specialists just can't get yo the bottom of. Regards, tina

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