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Hi, I am from the UK but have been living in Central America for 2 years and thankfully I'm due to return to the UK at the end of February. About 5 weeks ago I started getting mild back pain and a very sore right hip. I assumed it was nervestablished as I had suffered from sciatica many years ago. At my time of writing this I now have the most unbearable pain in both thighs and hips at night (probably similar to my upper legs being run over by a truck) also I have stiffness and pain now in both shoulders, upper arms and what feels like underneath my back bones as well as my neck. The pain wakes me up at night despite strong painkillers and I have to grab the side of the mattress to pull myself to the edge of the bed as it hurts too much to support myself. I drag my legs to the side if the bed you let them drop over the side. Once up I can barely lift my feet and walk like I'm 95. I am, in fact, only 61.

As well as the above, my hands hurt, I often wake with a bad head, feeling like I have severe flu. For the past 2 mornings I have gone back to bed because I feel so ill. I cannot walk far and after doing a few jobs at home I'm exhausted. It hurts to hang washing out.

By the afternoon things are improving and I keep thinking it may all just how away but it keeps getting worse every morning. I appear to have the symptoms of pma but of course need to see a doctor as soon as I get back to England.

My question is this. How likely is it that I have polymyalgia or could these all be the symptoms of some other inflammatory disease? I have at least 3 more weeks of this before I can get help.

If this is pma why is the only treatment steroids. Is there nothing else that will control this Disease?

Thank you for your help.

37 Replies

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  • That's sounds exactly like it started for me at the end of Nov 2016. I waited for 2 weeks before seeing a rheumi (by that time I had researched online, and figured out it was PMR). She put me right on 15mg of prednisone, despite my trying to want any other way of handling it. I did NOT want to take prednisone. A family member had taken it for several different ailments, and I knew what a powerful drug it was. I have never taken any drugs...just an occasional Advil. She convinced me, and by the next day I was so much better. I still had shoulder and arm pain, however, so after a few weeks, she had me go to 20. I took 20 for almost a month, then went back to 15 for a month and now have just reduced to 12.5 with no problems so far. ( a little worried about going to 10 next month...scared of the dreaded flare!)

    It sounds to me like you do ...they say it is more likely when you have the pain on both sides. Can't you see a Dr in Central America at least for the medication? Dr will do some blood tests which will confirm inflammation levels and will probably give you prednisone. Get it as soon as you can. You shouldn't have to suffer when you could feel better in sometimes just a few hours after taking the first dose. Especially if you will be traveling....you will be miserable!!

    I'm not sure I could have remained so sane with this weird immune disease if it hadn't been for these wonderful people in the U.K., Italy, Scotland etc on this forum. I had never even heard of Polymyalsia here in the US. Now, I have heard of a few people I know who have had it! There is really not that much information and even the Drs don't seem to know a lot about it. Stay tuned here....you will gain a wealth of information. These wonderful ladies can answer most of your questions, give you resources, and best of all HOPE! The good news...this too will pass!!

  • Thank you so much. I am overwhelmed by the many responses I have had already. I just hope I can assist others in the future, if I do indeed have pmr. Also I guess your right, I could just have the blood test only, to see if it points you inflammation - cant see that it wouldn't - then perhaps get some Meds. Not always easy to find an English speaking Dr here in Nicaragua and my Spanish is poor. Thanks again got your help.

  • Hi -LJ-

    I was just reading your reply to Sandipeppa, where you say you are worried about reducing from 12.5mg to 10mg perhaps consider going down to 11.5mg or 11mg instead, the general consensus of opinion is never reduce by more than 10% & have you looked at one of the Slow Methods of reducing? Once I got to 10mg my Consultant said reduce now by 0.5mg only.

    If you do want to try that cutting the 5mgs into 2.5mg & make up with 1mgs is easier than trying to split a 1mg tablet.

    You can only do that with the uncoated tablets, not sure what you have in the USA?

    Best Wishes

    Mrs N

  • Yes..I have had the discussion with my rheumi about the slow method, and she wants me to go from 12.5 to 10...then slow..... but I'm with you! I think I will do the slow method sooner.I really want to avoid a flare! Has anyone NEVER had a flare? We have uncoated. I have 5 and 2.5 and 1.

  • Good Luck 🍀 But at least she's onboard from 10mg

  • I am loathe to tempt fate, but I have never had a flare (yet!) I was fortunate to be diagnosed quickly and started prednisolone immediately. (18 months ago) When I got down to 10mg I reduced by very slow method by 1mgat a time I am now reducing by .5 and am down to 4/3.5. It's thanks to all the lovely, helpful people on this site that I have done so well. X

  • Thanks! Maybe I will be able to go from 12.5 to 10 ok.....I, too was diagnosed within 2 weeks...just a little "Flare" paranoid!! Did you go from 12.5 to 10?

    I will definitely do the slow method from 10, but still on the fence about 12.5 to 10!

  • Hi -LJ-

    Your question has popped up in the middle of a long thread so may get 'lost' in amongst it.

    The general school of thinking is don't reduce by more that 10% so from 12.5mg that would be 1.25 not really possible!

    If I remember correctly l reduced from 12.5 to 11mg then to 10mg & from then by 0.5mg.

    I got stuck at 11mg many times but l'm now sitting at 6.5mg a long, rocky journey in between but won't bore you with that.

    I would suggest you repost your question in a new thread as this one covered a different subject & could get very confusing.

    If you repost I'll copy part of this reply to get the thread going.

    Good Luck 🍀

    Mrs N

  • I went to 11 for a couple weeks before reducing to 10. There's no point rushing. Hope you manage ok and keep well. X

  • I wouldn't go straight from 12.5 to 10 overnight - you could try alternating 12.5 and 10 for a week or two before going to all 10mg. It all depends on how you feel on that first day with 10mg. If you feel really rubbish immediately it is probably steroid withdrawal and it should improve over time. If it gets worse it suggests the 10mg dose is too low too soon. But the Dead Slow approach has helped people avoid any steroid withdrawal discomfort and flares - win/win!

  • Hi Sandipeppa

    Welcome to the forum 💐 it certainly sounds like it could be PMR can you not see a Doctor before you leave CA? My concern like -LJ- is you might get worse before you start the journey home & I imagine you've packing etc to do?

    If you could get blood tests first ESR & CRP plus the standard tests it'd give your GP in the UK a baseline, though not everyone has inflammatory markers, but the most important thing is you need treatment especially if it is PMR.

    Let us know how you get on

    Best Wishes

    Mrs N

  • Thank you also Mrs N. I am seriously thinking about your advice. I do have quite a chunky husband who can negotiate the cases for me at the airport. We do have some packing but we have been getting rid of unneeded stuff for a while now so we should be OK with packing. However, to get back to where I actually live in the uk will take almost 48 hours 4 flights and a bus journey. I guess I was thinking if I wasn't actually lying in bed to sleep I wouldn't get the stiffness and pain so much but maybe I'm wrong. Perhaps you could advise me as to whether my symptoms are likely to progress even more than they are now. I can deal with the arm, neck and shoulder bit up to now, its the hips, back and thighs that give me the most pain. Once again thank you for your help. ( We leave for the uk on 13rd Feb and arrive home 25th. So only 3 weeks to go. )

  • Sitting on a plane could be very uncomfortable.

    Where is home?

  • I must remember to read everything before I Post! My mistake..... in fact we leave Nicaragua late evening on 23rd February and arrive in Newcastle, UK at 7.30 pm on 25th February. Unfortunately we have a long stop over at Miami.

  • I'm sure you must be desperate to get home now, it sounds like a gruelling journey, my main concern is that the journey itself could actually make you worse if you've had no treatment.

    I hope you are able to see an English speaking Doctor if not, write your symptoms down in bullet points & use Google to translate it into Spanish, it may not be perfect but it may help considerably when trying to explain.

    Please take it easy & try not overdo it, which isn't easy when getting ready to relocate.

    Very Best Wishes & Good Luck 🍀

    Mrs N

  • Once again thank you.

  • Hi,

    Can only re-iterate what others have said, if it is PMR, and it sounds so familiar, the only way to get relief is to take Prednisolone. No amount of painkillers will even touch it, I know I took them for months before I got a correct diagnosis.

    Your pains and fatigue are caused by the narrowing of your blood vessels which happens because of the inflammation caused by PMR. Although there are anti-inflammatory drugs - NSAIDs such as Ibruprofen - they do not work the same as Pred, and just don't tackle the inflammation in the same way. So, unfortunately there is nothing else that controls the symptoms, even Pred doesn't cure it, there is no cure.

    Please try and see a doctor before you leave, your journey etc will be very difficult if you don't. You will be able to make the journey even if you cannot get medical help, but it will not be pleasant!

  • if you don't have a regular doctor here in the US, you can use an urgent care, walk in place which would be less expensive than the emergency room at a hospital. It would also be faster than getting an appointment with a rheumatologist, which might be a 2 -4 week wait.

  • Thanks a lot. Unfortunately, I am in Nicaragua, Central America. I have delayed so far because everything is so much more difficult here especially without our own vehicle. However I can go to a doctor and just request the blood test myself even if they have no idea what is wrong with me and presumably they will prescribe prednisolone. My Spanish is not good but I am definitely considering it.

  • Sorry - read your post before my morning coffee! Mistook what you wrote for Central USA. Silly of me! Good luck on this and your long journey home.

  • Your symptoms sound depressingly familiar to me. I was diagnosed with PMR in March 2016. I was prescribed 20 mgs of Prednisalone and within 48 hours I was pain free, mobile and a long term depression had lifted. I was really quite giddily high, 15 mgs would have done probably. The main way we find out that we have this disease is by our response to steroid medication. My response was pretty definitive. Steroids are the only treatment. The aim once the inflammation is under control is to gradually reduce your dosage until you are at a level that controls your symptoms. I am at 10 mgs now and steeling myself for the next drop of 1 mg ( never more than 10%). It's a bumpy journey with set backs. This forum has been a God send - so much knowledge patience and kindness.

    For me it was a wake up call too - caring for my mum with dementia, ( now passed away) betrayed by a family member, hours filled with gruelling voluntary work, living through my adult children, putting them first. ( smother mother).

    Time to consider what I want and need, initially a long rest and when this thing burns out, who knows?

    Good luck, courage! Sandipepper.

  • Sounds like you have had a real fight on your hands. My Mum died in February last year from long-term dementia. This getting old thing is tough. I also have Hashimotos disease and osteoporosis so at just 61 I'm not as healthy as I anticipated I would be.

    I have only been feeling these horrendous symptoms for about 6 weeks now but it has certainly been bad enough for me to have had a few tears once or twice because of the pain. It seems you me it can be very debilitating and sad that the only treatment seems you be steroids, but I'm sure no one wants to go on them unless they have to. So I must just bite the bullet and get on with it.

    Of course, it may not get what I have but it seems dtomnthd symptoms and others comments it is quite likely.

    Amazing how it just happens too without warning. Take care and thank you.

  • Are you sure your thyroid stuff is properly managed? Thyroid is another cause of PMR symptoms.

  • Well according to the doctor in the UK it is but I have my doubts. No doubt when I am permanently back in the UK I should get some satisfaction. Or if not I will make sure I do.

  • Sandipeppa, as the others have said, it could very well be PMR. Is there any way you can get medical assistance now. Where are you in Central America? I've had PMR for almost 3 years and live in Panama about 7 months of the year. Our other home is in the Northwest Territories in Canada.

    When we first started living in Panama I obtained the name of a reputable physician from other expats. Early on I visited the doctor and had a discussion about PMR. The condition was foreign to him, but he said he would do the required research and refer me to a specialist if and when the need arose. He asked all the right questions in terms of my use of prednisone and the regular monitoring required re: potential side effects (blood pressure, glucose levels, bone scans, etc.). So far I've managed the condition on my own with the knowledge I've gleaned from this and other forums. However, I am confident I would be able to get assistance if needed.

    Are you able to investigate in the same manner to get help?

  • Yes I am now considering finding an English speaking doctor - not for a diagnosis as we only have 3 weeks left here now but just so I can get some prednisone to make things more comfortable for me on the way home.

    Thank you do much for your help and concern.

  • Great! Good luck. Please let us know how you get on.

  • It could be a textbook description of PMR - although it is possible there could be other things underlying the symptoms. PMR is just the name given to the clinical picture and for the illness we discuss here the most likely cause is an underlying autoimmune disorder that causes your immune system to be unable to recognise your body as self and so it attacks the tissues as if they were foreign invaders. However, there are various tests that should be done to exclude the other possible causes which include thyroid problems and certain cancers amongst other things.

    Why is pred the only option to manage PMR? Why indeed! It is to date the only drug that has been shown to manage the inflammation that the autoimmune disorder causes, which in some 80% of patients is reflected in raised ESR and CRP - however, they can be normal and it still be PMR if no other cause can be found. And that is all that the pred can do, manage the symptoms to allow a reasonable quality of life until the underlying cause burns out and goes into remission, typically in up to 6 years for 75% of patients although it happens for some in just 2 or 3 years. It isn't as bad as it sounds - you start on a low to moderate dose to get things under control and the reduce slowly to find the lowest dose that gives the same result, often well under 10mg/day. Most of the common side effects can be managed and no-one gets them all!

    Management with pred costs a few hundred pounds per year - the only possible alternative thus far is tocilizumab, a biologic RA drug, which has been shown to be able to induce remission much more quickly in GCA (a related arteritis which can threaten vision). There have been some small scale pilot studies in PMR which appear promising. However, it isn't known whether the remission it induces will be sustained or whether either ongoing or repeated course of treatment will be required. It costs more like £12,000 per year.

    However - you must have medical care even in Central America. Where are you? My friend has had exemplary care in Mexico (I know that isn't C.A) but another seems to have done well with doctors in Panama, good emergency care and the doctor spoke excellent English and knew about PMR (sometimes not a given for either in the UK these days!). Certainly, if the headache gets worse or if you develop any visual symptoms at all you MUST get medical care to rule out GCA. You could not risk waiting until the end of the month for care for that. PMR can be the presenting symptom for it but the possible consequences of GCA are more serious.

  • Thank you for such a comprehensive reply. I already have Hashimotos disease and osteoporosis. My sister has had lupus for many years, so there does seem to be a predisposition for this kind of thing.

    I did pay to see an endocrinolologistics here in Nicaragua and found someone to go with me to translate. I had full blood tests and my T3 was just going off their scale. I had another blood test in the UK and the doctor said it was OK. Both types of antibodies concerned were high and one, 'the antithyroid', normally should be less than or equal to 34 UI/ml and it was actually 146 so the antibodies attacking my thyroid are high. Although I do not know if there is any significance to this as far as PMR is concerned.

    I have been reading about the symptoms of GCA and although I have felt flu like symptoms and bad heads some mornings. Today is fine and I have no other symptoms of GCA but I am aware of it. I have also suffered from migraines for years - yet another thing that seems to be connected to auto-immune problems.

    I am so grateful for all the help and sound advice I have received ftom everyone on the forum already. Think you also field your warning regarding GCA and I will watch carefully for any symptoms.

    Sandi

  • Here are some links about PMR which have the same articles in Spanish - it is easy in the USA now, all has to be bilingual!

    rheumatology.org/I-Am-A/Pat...

    medlineplus.gov/polymyalgia...

    umm.edu/health/medical/ency...

    In the first two the toggle to switch to Spanish is to the top right, in the third it is above Definition.

    I've given you them in English so you know what the Spanish is saying.

    I've just noticed - the Uni Maryland says up to 6 years. So there are rheumies out there who aren't in cloud cuckoo land...

  • PMRpro you are a Star ⭐️ What would we all do without you?

  • Thank you for the links. I have taken to heart what I have been so kindly advised on this forum and sent my husband to the chemist. Guess what! He came back with Prednisone, no problems at all.

    It hopefully will work and cuts out the need for the doctor as by the time they sorted out blood tests etc. I would be almost home.

    I am so pleased I have tried to do something because of all the help I have been given by yourself and other sufferers. So now I can hopefully get home pain free and start a proper diagnosis in the UK.

    I was also alerted to GCA because of my bad heads which made me panic a bit, so I hope if do find I have that (which I don,t think I have the symptoms of) at least for now I can alleviate any damage that might have occurred.

    I will let you all know how I get on in a few days. I have taken my first Prednisone 20mg this morning.

  • I could move almost normally just 6 hours after taking 15mg. There are others for whom it was the same. Others take a bit longer. But don't be tempted to go higher - that masks things if it isn't clearcut PMR. Other things will respond to a higher dose, PMR is quite characteristic in responding quickly to a moderate dose (20mg or under).

    And please see my other post on your new thread.

  • Hello Sandipeppa, your description really takes me back - sounds exactly how my pmr developed. I just want to reiterate what others here have said - if there's any way to get help before you get back to the UK, go for it, especially in view of what you say about the headaches. Really should be checked out asap. I, too, was overseas (for some months) when my illness progressed, and being a stubborn cuss and thinking (wrongly) that I knew what the problem was I waited until I got back to see a doctor. Now that I'm more clued up, I can only thank my lucky stars that I've not ended up with GCA.

    I can endorse the comments about long-distance travelling with such a degree of pain. My journey involved ferries and long car drives, and at every stage I had to be levered out of car/berth/seats etc. Very traumatic (and totally self-inflicted, as by then I'd understood that ordinary painkillers did nothing to help!).

    Hope you manage to get some relief soon. Love it or loathe it, the prednisolone kicked in within a couple of hours for me, and I felt like I'd got my life back.

  • Thank you Patience for your comments.

    How you managed to be overseas for several months with this and no treatment , I don't know. Mine has been slowly coming on for 6 weeks and I only have a short time to go till I am home. Although, I am definitely considering the advice from yourself and others.

    The problem with the headaches is I do get migraines and suffer many headaches too and always have, which generally always gives me a pain directly behind my right eye . I am now about to send an email to a doctor at my surgery in England - one of the better ones who I know is familiar with PMR as my friends husband also goes to him with this condition.

    I am also contacting someone who is familiar with the health system here to see what the best way to go about it is. I don't have health insurance here in Nicaragua.

    I am so pleased I joined this forum on the advice of my sister in the UK who suffers from lupus and who's husband has had PMR for 5 years.

    Once again thank you for your timely advice and I hope you keep well and reach your goal of bring PMR free.

  • If this is indeed PMR, prednisone is a Godsend! You won't mind taking it because it is a miracle treatment for this condition. I am able to function again and I feel like my old self. So far I am doing well on weaning down. I will have to be on prednisone for almost a full year before we know if it went into remission. That's okay because the dosage is getting lower and lower every 2 weeks. A good rheumatologist is the key. I hope you get to the bottom of your aches and pains soon.

  • Thank uou so much for your reassurance on taking the prednisone. And you kind thoughts.

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