New and nervous

Hi everyone - Diagnosed 2 days ago with PMR - 15mg a day Pred, Vitamin D and calcium. Health shop recommended Magnesium. Do I need it? I should ask my GP first in case the tablets don't go with prescribed meds.

My pain was horrific and I was crawling upstairs and not sleeping for days but still went to part time job as we do dosed up with painkillers as we dont want to give in. It is so good to be so much more moveable now after only 2 days but I am nervous about the Pred. But I expect this is normal and after all I am still in shock,

I have been swimming 3 times a week up until when this started 3 weeks ago, Now that the pain has subsided somewhat - do you think I should continue as I don't want to overdo it but I enjoy swimming?

Also I don't want to alarm the family but will have to tell them - that is where your website comes in as they can have a look at it to learn more. It's very good thanks.

Do you find PMR can flare up with stress?

Will the tiredness settle when I am more in to the Pred?

Any advice appreciated

Thank you

24 Replies

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  • Hi Cassie, I am so sorry to hear you have been diagnosed with PMR, but at least you now have pred which works like magic. I saw two GPs who both saud I did not need magnesium supplements, I did buy a bottle though. I have not bothered to buy another one.

    I gave up swimming about two months before I was diagnosed. I got to the point I thought I would not be able to get out of the swimming pool because of the pain! I was told by my GP I had a virus. I started swimming again soon after I was diagnosed with PMR. I can't remember exactly when.

    My family were totally unphased that I had PMR. I do find people do not understand I cannot do the things I used to do as I look so well. I tell them it is the drugs that make me look so good.

    PMR loves stress so it is a good idea to take life easy and rest, which is quite a shock after an active life. I reckon PMR was brought on by stress in my case too.

    One thing you should have is a Dexascan, as pred can cause problems with bone density. If you have a good doctor they will arrange this anyway. It also may be a good idea to get a vitamin D blood test too, as vitamin D deficiency can cause similar symptoms to PMR.

    I found that fatigue got bad at around 8mg, at around this point the adrenal glands have to wake up having relied on the pred to do all their work at higher doses.

  • Hi Piglette

    Thank you so much for your advice -it so helps. I tend to have a vivid imagination and having read up on GCA being a complication of PMR, how will I know if I have it too? How quick will the onset be? I suppose I am panickly in these early days.

    I want to carry on working in a school supporting but I am finding a whole day too much. I am thinking of asking to do 3 mornings as I still have motivation and I am scared of giving up.

    I did have a vit D test and I am deficient and I am that - is the defieciency connected with PMR? I was surprised at this as I have a healthy diet with oily fish but not too much sunshine this year!!

  • Hi cassie. With relation to GCA and PMR don't get yourself in a panic. GCA usually only presents itself if you are not being treated for PMR. Mine developed after about 12 months after the onset of PMR which had not been diagnosed and therefore not treated. However IF you do get head symptoms - tender scalp, difficulty in eating , visual problems then you need to contact GP. But once you are on Pred that scenario is very likely. So please don't worry yourself unnecesarily it won't help you cope with PMR.

  • hi Dorset Lady

    Thanks for your advice I feel calmer now

    Cassie

  • Hi Cassie, I think we all worry about GCA. My optometrist said seventy five per cent don't get it, so it is quite good odds. He said if I had a GCA headache I would know as it is pretty bad, also tender scalp and jaw pain eating. If you start having vision problems you should get medical help immediately.

    I would ask to reduce your working time as PMR can make you feel pretty tired, I have more of a desk based job and can work from home too.

    I heard that half the UK population are vit D deficient, I was too. The local chemist offered a free test recently and discovered even his assistant was deficient! My reading was 26 what was yours? My reading went up with supplements though. Only about twenty per cent of vit D is derived from food the rest from the sun.

    It does seem you have a good doctor hang onto them, they seem to be few and far between.

  • Hi Piglette

    It's interesting about vitamin D - I dont know what my reading is but I will ask GP.

    I have asked my boss to cut down my hours and it has been agreed as I am tired at the moment but I think it would make me very fed up if I stopped work so I am trying to get a balance.

    Thanks

    Cassie

  • Cassie

    You wrote' I did have a vit D test and I am deficient and I am that - is the deficiency connected with PMR? '

    Not really it is just that Vit D deficency causes aches and pains just like PMR. It should have been corrected first.

    Follow this link

    pmr-gca-northeast.org.uk/us...

    and then click on - BSR & BHPR Guidelines for the Management of Polymyalgia Rheumatica (PMR).

    Where do you live?

  • Sambucca

    I live in West Yorkshire.. I must admit I was shocked to find a Vit D Deficiency- it seems that a balanced diet which I have is not good enough.

    Thanks I will look at the link

    Eileen

  • Cassie

    Do you live anywhere near Baildon or Brighouse?

    If so, send a Private message and I may be able to get you in touch with another person who has PMR and is a member of ours.

    We also have a book 'Living with PMR&GCA' and a DVD, called 'You Are Not Alone' all produced by Patients for Patients and not written in jargon. The DVD was made specifically to help not only the Patient, but family, friends, carers and employers. You might want to take a look at them on the website.

  • Vit D deficiency is very often found in autoimmune disease - and what we call PMR is the symptoms of an underlying autoimmune disorder that makes the body's immune system attack itself, thinking it is "foreign", which is what causes the inflammation, pain and stiffness. Whether the low vit D is cause or effect isn't clear - except that if you supplement babies with vit D they are less likely to develop Type 1 diabetes later in life (Type 1 diabetes is an autoimmune disorder where the immune system destroys the pancreas cells that make insulin so it does look as if there may be an element of cause too. As Sambuca says, very low vit D can also cause the same sort of symptoms as PMR, Sort out low vit D and you may improve the PMR symptoms.

    In fact piglette, it is even worse! Only about 10% of the vit D you need comes from even a healthy diet - unless you are eating about 1/2 lb of wild oily fish every day or other equally silly amounts of certain foods like 17 eggs and a couple of pounds of UV irradiated mushrooms! And here in northern Italy, at the latitude where we are supposed to be able to make vit D most of the year, 80% of the local population is said to be vit D deficient - so I hate to think what the situation in the UK which is a lot further north!

    Only about 1 in 6 people with PMR go on to develop GCA - PMR can be a symptom of GCA but doesn't have to be. If you feel worse rather than better and get headaches or jaw pain when chewing check with your doctor - if you get visual symptoms of any sort, don't wait for a GP appointment. Either go to the practice and insist on being seen NOW or if that isn't possible go to A&E and explain your history. It is classed as a medical emergency - not that you'd think it was the way some doctors react!

    As for magnesium - don't bother getting supplements unless you have trouble with cramp. Pred can make you lose more magnesium in your urine and the blood level isn't a good indicator of whether there is enough in the muscles. Some doctors in the UK maintain it makes no difference whereas in the whole of the rest of Europe the first thing your GP will tell you try if you have muscle cramps is magnesium supplements - they sell them in every supermarket it is so popular. Judging by my husband it works well.

  • PMR pro

    Thanks as a newbie I find this interesting that a healthy balanced diet does not provide enough Vit D - and you living in a warmer country too - I am certainly learning loads from you all.

    Thanks

    Cassie

  • Hello Cassie, and welcome although I'm sorry to hear you have just been diagnosed with PMR. You have already received lots of helpful advice from piglette, and I just wanted to add that rather than follow any advice from health shops and the like, you should ask your GP for a magnesium blood test to see whether you are deficient and in need of such a supplement.

    In the case of any other supplements you might consider, it is always recommended to check with a pharmacist for any interaction with steroids before taking.

    I had blood tests for both magnesium and potassium levels and both were found to be normal. However, a blood test for Vit D showed a deficiency, and I needed a 3 month course of high dose pure Vit D3 (Colecalciferol) to restore levels to normal.

    As a newly diagnosed patient, you will find lots of information in a book by Kate Gilbert 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide', available on Amazon and direct from the Charity, PMRGCAuk pmrgcauk.com.

    With regard to swimming, you may want to have a little break from it for a couple of weeks initially until the steroids get good control over the inflammation but it very much depends on how you feel. Certainly you need to have plenty of rest and not overdo things in these early days otherwise PMR has a nasty habit of coming back to bite. I'm glad you feel so much better after just a couple of days on the steroids, and long may that continue. Don't be in a hurry to reduce from the starting dose - you will need at least a month at 15mg. If after that time, your symptoms are well under control and blood tests have returned to normal (if you are someone who had raised markers at diagnosis), then you can try a small reduction but not any lower than 12.5.mg.

  • Hi Celtic

    Thank you so much for advice and I will get that book as although websites are good I like to have a book at hand. I will see how swimming goes and try at a quiet time and stay in half an hour instead of longer.

    Magnesium advice thanks. So good I found you all.

  • Hi Cassie 1208, I too have PMR and was diagnosed in April this year. I have had various tests for other things which have so far drawn blanks and this was due to me struggling to reduce at the pace that was suggested. I started on 15mg and I am only now on 14.5 mgs which is so far going well. I also work in a School which at times is very challenging. It took me a long time to accept that I needed to share my condition with my colleagues and pace myself a lot more accepting what I realistically can and can't achieve. They are all fantastic and I would recommend a word with your "Boss" if you feel able and being able to stay in your job confidently even reducing hours would be a positive for you. I do get very tired and have had to take the occasional day off but I try to pace myself and get a lot of pleasure in working with and being around the children. It does make us more suseptable to viruses and the like, and have to be vigilant about certain things ( Chicken pox ) for one. This sight is amazing, and has helped me tremendously. Rest is the best advice given here and balancing and adjusting our lives to stay as well as we can. I hope you feel better soon and yes, swim even gentle walking in the water to build up? Kind regards Jane.

  • Hi Jane

    Thanks for your comments. I talked with my boss today and told him I was stuggling to do a full day so he has agreed to a cut in hours to work 3 half days a week - this is ideal for me. You can understand that although fatigue creeps or rushes in, to give up work altogether would not be good for me as I enjoy the job. It is good advice you give to balance life and to rethink about lifestyle. I will try to swim in a week or so just for half an hour and then see how I feel later. Although I told my boss I asked him not to tell anyone - maybe I should tell work colleages but I dont want all the fuss yet when I havent come to terms with PMR myself.

    Best Wishes

    Cassie

  • Morning, glad you are getting the book force feed it to family I marked parts I needed them to read keep mine by coffee machine/kettle they can make a drink while reading. No more superwoman act ask for help if that fails demand

    FINE is a four letter word never used in doctors offices in fact it should be removed from dictionary it means

    F= Fed up or any other f word

    I= Insecure

    N= Nuroct

    E= Emotional

    In my family if you use this word you will be asked whole word or any particular letter

    Sence of humour required ,good luck

  • Hi Olive

    Yes good advice thanks- I think it is so important for close ones to know about PMR and I am looking forward to the book arriving.

    Sense of humour - I will try!

    Cassie

  • N should have said Nuroctic phone rang made me jump

  • Olive - did you know you can edit your own posts? Click on the box with the little arrow to the right of the Like box and it offers you the choice of Edit or Delete.

    When you click on that box next to someone else's post it is to report it for some reason.

  • Having a blond morning forgot about edit button can't blame pred as14 days pred free . Feeling good but I will remember not to push to hard

  • Hi Cassie

    sorry to hear you have PMR i was Diagnosed in March and the Pred worked within 6hrs although i was rather hyper on 20mg the relief was amazing

    i don't worry about the tablets as you only live once and at the moment i need them !!!

    still find it hard to slow down but boy dose my body tell me so to rest and i do.

    so go swimming then take it easy the rest of the day and be good to yourself

    Kay X:)

  • Hi Kay

    Thanks for your positive advice. I must say I am rather self pitying at the moment as I try to avoid taking medication and now I have to for the pain. It came on quickly so it has been a shock.

    I like your comments you only live once and I will take that on board and try to relax and go with the flow.

    It is strange right now because like the rest of us I have been in terrible pain and now this magic PREDS has taken it away. I find it hard to explain to people that the inflammation is still there. I would imagine that the temptation to over do it being virtually pain free and then suffering afterwards.

    Yes I will go swimmimg on a day when nothing much else is happening - a good idea.

    Cassie

  • Hi Cassie

    You might get the side effects of Prednisolone and Alendronic Acid (which I assume you are taking), but you are starting on a fairly low dose of Pred., so maybe nothing will happen.

    Side effects of Pred./PMR can be things like, palpitations, constant tiredness, depression, weight gain, moon face, dull headache on one side of the head and, of course, eye problems (see your optician soon) etc. That's enough to be going on with! Everyone is different, of course, so don't panic at this stage. Just enjoy the freedom from pain.

    Magnesium is a helpful supplement for joints (athletes take it) but check with your specialist first. Swimming sounds great if you can manage it. Is PMR due to stress? Very possible. Mine arrived out of the blue following the death of a very close relative. There might be a link.

    Welcome to this site. It's extremely helpful. You learn a lot here that your doctor won't always mention -- even if they knew about it!

    Regards, Greenheath

  • Hi Greenheath

    Yes I have learnt lots from this site. It is interesting about stress. I may have had the early symptoms of PMR in April which was diagnosed as frozen shoulder and rotator cuff tendinitis. Then I had stress with the shoulder and lost energy and had lots of pain and I had to cancel a holiday. In August my boxer dog died suddenly of heart failure and I was so shocked, 3 weeks later the other boxer had a cancerous lump removed - a few weeks after that energy drained, pain in neck and shoulders got worse. So thinking about it-that could have been the trigger for the terrible pain and the full onset of PMR.

    When you say eye problems - do you mean GCA or deterioration with PMR - I

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