New Girl

This is all new to me, had been unwell for about a month, awful aches, pains funny headaches, looking the colour of putty,flitting pains, night sweats, you will all know the picture I am painting. On my first visit to my GP she ordered chest xRay and did a lot of bloods and put me on Omeprazole for a gastritis as I had taken too many Brufen and it had irritated my gut big time,

On my return after a week, symptoms had got a lot worse , by now my left leg was weak and really sore, I had to lift it into the car! and when I walked in she said I think I know what's wrong, you have PMR. I had never heard if it and looked blank. She said my blood tests and history were all indicators and she started me on Prednisone 40 mg a day with a warning if things got worse then to get back in touch or if at the weekend then to get onto NHS 24.

2 days later no improvement and by now my headache was dire, right sided headache over my eye with another area at the back and my scalp scarily tender to the touch, unable to brush my hair or even touch it. I was seen at the local hospital and was told I now also had Temporal Arteritis and the Prednisone was upped by 20 mg right away and to continue at 60 mg a day until seeing me GP for a review this Friday.

Last night a 10 pm I suddenly began to feel like me again. I could not believe the difference, today I ache quite a bit, sitting too long watching Baroness Thatchers departure I am afraid.

I am extremely tired, doing not very much makes my ams ache and too much typing on my iPad makes my neck and shoulders sore.

I guess this is just the start. I would really like to know what might be to come in the next few weeks and months. I am off work at present as I don't think I could get from the bus stop to my work anyway let alone do anything useful when I get there. Any ideas how long I might have to be off work, I know it's not a one size fits all but anything would be brilliant.

I apologise for the length of this first blog post, I did read the guidelines but got carried away. This time last week I had never heard of PMR and GCA but I have a horrible feeling I am about to become an expert.

12 Replies

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  • Hi Dovelady,

    Wow, what a few weeks you've been through! You will need to stay on high levels of Pred for a little while to ensure your eyesight is ok. I unfortunately lost the sight of right eye when I was diagnosed, with GCA, so if you get any blurring of eyes then on to the GP pronto. You feel great on steroids at start, but unfortunately the side effects then kick in, some not at all pleasant, but the alternative does not bear thinking about.

    This forum is brilliant, I have found it invaluable over the last twelve months, whatever you are going through, there's always someone whose been there before you and can offer advice. Don't be afraid to ask any question, whether you think it is silly or not. Also do as much research as you can, most GPs don't have a wide knowledge of PMR/GCA or TA, so sometimes you need to steer them in the right direction - gently of course!

    Don't even think about work at the moment! Just concentrate on yourself.

    Keep in touch, letting us know how things are going, and good luck. Dorset Lady

  • Hello Dovelady

    I can so empathise with all those horrid symptoms you've experienced, but it's so reassuring to hear that you have been treated promptly with a sufficiently high steroid dose in order to protect your eyesight.

    As for wanting to know what you can expect in the coming weeks/months, at least nothing will be as bad as before diagnosis. There is a risk of possible side effects from high dose steroids but no-one gets them all and some people don't get any so let's hope you're one of the latter.

    You will probably find that you get very tired easily whilst on these high doses - it's a combination of both the inflammation and the steroids. I had retired when I contracted PMR and GCA and there was no way that I could have contemplated doing work inside the house let alone outside. A couple of GCA sufferers I know each took several months off work followed by a return part-time at first. It's very dependent on the sort of job you do and how you feel. But it is very important to learn to pace ourselves and not overdo things but to give ourselves lots of TLC whilst the steroids do their job of getting the inflammation under control.

    Good luck with your GP appointment on Friday and it would be wise to always have your ESR and CRP blood tests repeated before any reduction in the steroids.

  • Hi dovelady,

    I can't possibly congratulate you on getting the 'double whammy' but I do feel that you are so lucky in having a GP who recognised your symptoms and put you on a suitable dose. You are now off to a head start regarding PMR/GCA.

    GCA, the more dangerous of the two illnesses, needed the high dose of pred. that you were given to knock it for six, and that's what is needed for this condition which is quite capable of robbing you of your sight.

    The aches and pains of PMR are nasty, but as PMR, more often than not, burns itself out and in the long run leaves very little damage, lower doses of pred than you were given can alleviate the pain. However, you also have GCA.

    This high dose which you were prescribed, will knock out the pain and inflammation, and, take heart, you will be able to reduce the doses quite quickly - follow your GP's advice, but if you have a flare in symptoms, then question the reductions immediately.

    I have only had PMR, but I had a bad flare just over a year ago which suggested a risk of GCA. A very knowledgable GP put my meds up to the level which got rid of the awful headache and scalp tendernous which suggested possible GCA.

    The blurb which is included in your package of prednisolone tabs looks frightening, but try to remember that most of us do not get all of the side effects, and a lot of these are reversible once the steroids are discontinued.

    Hang on, hold on!

    Pats.

  • Two years ago, I was in your position, minus the GCA. 20mg of Pred put me back on my feet and the reductions have been regular with only one minor blip. Now I am on 2.5, and feel that I am still making progress so there is light at the end of your tunnel too. Good luck and good health!

  • Hi, I was diagnosed with GCA just over a year ago, like you put on 60 mg and straight away improvement; by August, less than 6 months later was done to 15 mg. But then reductions have to slow. fortunately, have had no real side effects apart from at the beginning with sleeplessness, little weight gain, and face not too bad. Now down to 5mg and reducing very slowly but all is going well. Regular blood tests to check the inflammation vital with regular visits to GP, I used to go monthly, blood test followed by visit to GP for result but now doing this bi-monthly. Lucky to have a good GP and think we have been on a learning curve together! Although retired I have a very active life (am a local councillor) and once condition under control life has gone on very much as before but of course I do not have compliction of PMR.

    Good luck.

  • Thanks so much for all these really encouraging and positive responses. It really is very true that a trouble shared is a trouble halved. From initial feelings of being very frightened things don't look quite so bleak, although I am making some big decisions about how to proceed . On the work front I will take all the time I need, nobody is irreplaceable despite thinking you might be. Just heard yesterday too that I am to be a Nana for the first time in December so one huge thing to look forward to.

    I had really thought with the big doses of Pred I would have no symptoms but still woke in the night very stiff and sore, slight headaches eased by Paracetamol but totally wiped out after very little exertion. Sleep us very fitful and I wake not rested at all but I have a hugely supportive family and thy are being brilliant, currently my sitting room looks like a funeral parlour there are so many get well flowers! I feel quite buzzy and up and wonder if it s the effect of the drug, perhaps a false euphoria.

    I am so glad that I have found the right place to come to get my questions answered as I m sure I am going to have loads, will let you know what tomorrow brings after I have seen my GP. Will I be referred to a specialist Rheumatologist or any ologists or can this be dealt with by a pretty switched on GP?

    Thanks everyone.

  • Hi Dovelady

    I was off five weeks and I went back too soon would have been wiser to take an extra month it is not worth pushing yourself. I am on 15mg pred and went to Zumba this week and feeling quite good. You will be very tired and maybe will get flare ups especially if pred is reduced too soon. Look after yourself well and be selfish. Take care

  • Hi Dovelady, just to give you a little more info....I was diagnosed with per Nov 26. given 60 mg of prednisone 1st day, 2nd day 50 mg...on 6th day down to 10 mg....stayed on it for 4 to 5 weeks, 71/2 mg for 4 to 5 weeks, 6 mg 4 to 5 wks...now on 5 mg for 4 to 5 weeks. I had suffered for about 6 to 7 wks before my GP diagnosed me....yes could hardly get out of the bed, out of a car, comb my hair...etc...Within 3 days of prednisone was riding my bike...i am still stiff in the morning but not real pain like before. I just say to myself that i have a visitor, polly, and hope she eventually goes away....Good luck....Carris

  • Hi Dovelady, are you still on the Butran. I was on the strongest morphine as I also have a spinal condition - I can tolerarte the MST but was put on Butran - the sweats were highlighted and it made my pain worse - get off this onto another morphine - you will notice the difference in days - I was on the 20mg patch with 200mg sublingual tablets for breakthrough pain. Thinking of you

  • Forgot to say I have PMR and GCA - along with other things and it is a long road. Fight for yourself!

  • Hi Dovelady

    So sorry to hear of the awful time you have been having.

    I consider myself very lucky compared to yourself and some of our fellow sufferer's!!

    I started off on 45mg per day and have been reduced down to 15mg per day, night sweats are getting better, but still have very bad joints due to Bacterial Infection that I seem to have been getting for about the last 3 months on and off so on my Amoxicillin. I had a positive bit of news from my last blood test that my levels were slowly getting better, but it has thrown caused my diabetes to throw a bit of a hissy fit in the levels are very high compared to what they used to be.

    I have been going to work, but do struggle through the day and find that I cannot always concentrate on things, but have been very lucky that the 26 other people within my office are very caring and supportive with 24 of them being men and 2 part time ladies!!

    My husband is brilliant and he has many medical issues at the moment and has sadly been off long term sick, but to be honest we are a lot luckier than most.

    As I always say there is always someone worse off than you and to be things into context my symptoms and problems and very insignificant compared to all of the awful things that you have been through in the last few weeks.

    Take Care and try to stay cheerful I know it is easier said then done as I find it takes all of my energy just to do the ironing!!

    X

  • Hello All.

    Patsy, I think you misread my post a wee bit, it was Brufen ( Ibuprofen) not Butran I was in for pain, but it had no effect and all it did was give me a stomach ulcer or gastritis. But thanks for the concern and support.

    I was back at my fabulous GP yesterday where I had more bloods done, to be a weekly thing I gather. She was contacting the hospital to get a Temporal Artery biopsy arranged even though I had started the high doses of Prednisolone . Also started me on the Alendronic Acid and calcium and changed my analgesia to Tramadol and Panadol. Still on 60mg Pred for a few weeks though.

    I am starting to feel a bit better, sleep is very fitful, awake for three plus hours last night and woke with stiff shoulders, neck and slight headache. Tired myself out washing my hair and having a shower, but I did make a loaf of bread just now but shoulders again aching and heavy . I never knew so little exertion could cause so much discomfort.

    Rosabud...it is really encouraging to read your story and indeed all the other contributors above. I really feel I am in the right place here, there is such a vast pool of knowledge and experience and I know I m going to use it. At ths last visit my GP actually told me about this forum and said I would find it very useful.

    I have no idea when I might get back to work, not even going to think about it for a while. Still smiling though as the support from friends and family has been just great and they don't deserve me wallowing in the poor me scenario. As you say there are lots of people far worse off than me. I know I am going to come out the other end stronger.

    X

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