pmr without steroids(so far)

Hi, thought I would put in my twopennyworth; I have pmr,I'm 99% sure as I have all the syptoms and the raised inflammatory levels.At a guess I've had it for about 5 months.I don't want to go down the steroid route (as is the case with most people) so I've tried a radical change in diet to anti-inflammatory foods and have had various therapies inc massage ,chiropractic, bowen etc.The latter help for a day or so but nothing seems to have much impact.I am just about able to carry on with my work and with driving etc so will continue without steroids for a while and see how it goes.About to try a reishi mushroom supplement.

45 Replies

  • Hi olde,

    If you do have PMR then the only thing that will help the inflammation is steroids. Other therapies MAY help, but not control it to the same extent.

    I would warn that you need to be very mindful of your symptoms though, if left untreated PMR can morph into GCA - a very different and dangerous beast.

    I had symptoms of PMR/GCA for 18 months, having never heard of either I wasn't aware of the risks of it being untreated. I ended up in local A&E department having irretrievably lost the sight in one eye, and every possibility of losing the other had I left it any longer! Fortunately it was diagnosed and within the hour I was on 80mg of Pred.

    I wouldn't want anyone to go through what I did, neither the two weeks of waiting to see if my left eye could be saved, nor the side effects of being on extremely high doses of Pred.

    It is not an illness to be taken lightly. Better to get it controlled now, with a much smaller dose of steroids, and therefore less chance of side effects than leave it to get worse.

  • I know this isn't an illness to be taken lightly as I have stated on more than one occasion I have my grandmother go through this every day for more than twenty years! Thank you x

  • How do I delete a post?

  • Tap the box with v on right under your post. Gives you three options

  • Who is olde? I thought this was an open friendly welcoming site but sadly I was wrong!

  • Hi,the day after I wrote this I decided to do the steroids - I spoke to someone who had had pmr and steroids and had suffered damage to his hands prior to steroids as it was undiagnosed.Felt I had tried the alternatives long enough.The steroids have worked a miracle but of course this is the 'honeymoon' period!

  • Yes it is, but hopefully the inflammation will now be controlled, and won't cause your body any further damage. Unfortunately you will probably get some side effects from the Pred, but there are with any drugs.

    Good luck, please keep in touch and come back with any queries, comments etc.

  • Hi olde, welcome to the site. Do heed DosetLady she is a kind and wise contributor to this site.

    My daughter's mother in law told me that her mother had PMR and refused to take steroids. She made me feel a little as if I was weak for succumbing to them. But quite honestly I could barely walk or raise my arms above my shoulders, my husband had to help me out of bed and soft chairs. I certainly felt much too ill to work and had to give it up. I am amazed that you are managing so well. I would dearly love to be off medication. Please continue to let us know how you do.

  • It's nice to receive a welcome but that doesn't seem to go to everyone

  • There seems to be a mix up. Did you post about not taking Prednisalone, Tiger_lily?

    Has someone hurt your feelings?

  • I replied on the wrong message which I will apologise for. Yes down right rudeness I would call it! I have read posts on this site for a couple of weeks now and thought all of you were open friendly and welcoming but sadly I was wrong! I wish you all well in your health and your future but I would rather not be part of this group. Thanks and bye

  • If this is directed at my response to olde, then you are not reading it as I wrote it.

    Having been through what I've been through, my aim is to stop others having the same experiences.

    If you thought my response was unfriendly you were wrong, it was factual and a warning of what can happen if PMR is not treated in a timely and appropriate manner.

    I make no apology for trying to save somebody's sight.

  • I took no offence at all and welcome your comments!

  • Good, thank you. As I've been through the mill with GCA wouldn't wish anyone else to suffer the same.

  • Tiger_lily l think possibly there may have been a mixup in the thread of a post. I'm not sure which post or reply upset you.

    I can assure you everyone means well & this is a kind, caring & knowledge group, maybe you should give it a second chance? There's been a lot of activity today & posts can get mixed up.

    My Very Best Wishes to You & Your Grandma

    Mrs N 💐

  • Well said Mrs Nails - I'll second that :-)

  • I'll third it! well said mrs Nails. Let's all not get into a tiz

  • Mmmm, 'Hidden' (if you are still following..).

    First: Welcome to You! :-)

    I just caught-up on the above threads (crossed wires?) - sorry to know this... :-/.

    Many people come to this, and similar social forums in a state of 'Frazzledness', confusion and scepticism (or sometimes desperation?) about how they will be received, who they can trust, and what they can expect in terms of both advice and support. I was one such 'Newbie' 2 years ago... but now I see the site as a brilliant collection of unknown but trusted 'friends' from all walks of life and in many Western / European countries, but with a shared experience. It has been amazingly helpful to me (unlike my GP..), with only one-ever minor conflict with another user in amongst thousands of happy interactions here.

    Yes, people have different styles of Communication on these sites (as in 'Real Life'?!). Some contributors here 'shoot from the hip' - usually in terms of straight-talking, maybe seemingly 'blunt' (?) advice gained from bitter experience and / or their professional / technical expertise. Others will 'cuddle' you (ah, Bless!), and share the emotional journey with you. Others are completely Bonkers and wanting some light relief from the serious stuff (you might guess which category I fall into... ;-) ). Some are a mixture of all of the above - we are all different, and yet have something in common - we are on the Journey of PMR and all that goes with it.

    If you are personally offended by a post / reply, you have the option to report it - and the very capable Administrators here will sort things out. But, fortunately, this seems very rare on this site, thank goodness.

    Try not to walk away - you are in great company.

    MB :-)

  • As Dorset Lady says, pred is the only way to reduce the inflammation effectively and you do need to be aware of the dangers of GCA. Since I have been using this discussion board I think virtually everyone has succumbed to steroids in the end. At least you can get back your life. I could not get out of bed, dress or leave the house before diagnosis.

  • Greetings olde

    Thanks for your interesting post. I agree, many people don't want to 'go down the steroid (typically oral Prednisolone) route' (as you suggest) - or maybe later wished that they hadn't when they understand the process better! But it really is a trade-off. As the experts here will confirm: either untreated (with steroids) PMR and little or no quality of life (plus more the far serious consequences of GCA, as DorsetLady can confirm), or take the steroids and at least resume some quality of life until the condition (hopefully) burns itself out.

    My first question is: have you had an actual diagnosis of PMR from a Rheumatologist (from what you say, I'm guessing, not)? Second question: exactly how severe are your symptoms? Third: if you have raised inflammatory markers (ESR / CRP?), did your GP raise the possibility of PMR, or not?

    If it helps: in the vast majority of cases, PMR symptoms are (quite literally) crippling until or unless treated with steroids to manage them (I can testify, as a previously fit, healthy and active, relative 'youngster' at age 57 when eventually diagnosed). This was so in my case, and as many others will report here. If you do in fact have PMR (but clinically un-diagnosed), I'm amazed that you have been able to function normally at all, let alone work on a daily basis for 5 months!

    From experience both of having PMR for 2 years and the wealth of wisdom, support and experience on this site, there might be a few instances of people with confirmed PMR getting through it without the steroids, but only a fortunate few. Although the steroids come with their own side effects, so do the alternatives - It's the lesser of two evils I'm afraid.

    The consensus seems to be that diet and alternative remedies can help in the process - as they also would when we are normally 'healthy' - but that, ultimately, PMR and the far more serious possibility of GCA can only be effectively managed by the steroids long-term.

    I'm sorry this isn't what you (or others new to PMR) might want to hear, but I'm sure that the experts on this forum will echo my thoughts and experiences...

    I can only sign-off this reply by suggesting that you first get a FIRM diagnosis of PMR (or otherwise..) and then you will know where you stand both with the most suitable PMR treatment regimen and / or if it's worth pursuing the dietary / other therapeutic options.

    Good luck, keep us posted!

    MB :-)

  • If I could communicate like you Mark, I would write the same. Well composed and to the point.

  • Ah, thanks Pete, very kind of you :-)

    It reminds me of the old quote by Rudyard Kipling (I think..) in reply to a friend's letter to him. It goes: I'm sorry this letter is so long, I didn't have time to write a short one'.

    As for Kipling, I hear he also made 'exceedingly good cakes'.. ;-D

    Keep smiling..

    MB :-)

  • Nice one Mark, my wife buys hand bags made by a company called kipling, l boringly say to her "is that where you keep your cakes"

  • Surprised she hasn't caught you one round the ear with it!!! ;-)

  • So the hotel wi-fi's working ok then? ;-)

  • Back home now - and yes, the hotel in Malta had good wifi, good enough to watch TV!

    But we were in Kitzbuehl in Austria this week for one night (not paid for by us I hasten to add!) in the second most expensive hotel in the town. At over 300 euros per night - they charged extra for wifi!!!!!!

  • Oh, is that why I have got one ear bigger than the other!

  • Pete, if it gets too bad, you might have dire ear... :-D

  • Do you mean- keep going to the wc

  • I think I do have pmr as I had all the symptoms such as stiffness in the pelvic area and shoulders etc and seizing up big time after sitting or lying in bed. I also have raised inflammatory markers.I have struggled in leading a 'normal' life. The doctors test to confirm pmr is to take the steroids for 2 weeks.I have now decided to do so(as the alternatives didn't work) and my condition is improved by 70/80%.

  • Wow, this was me 6 months ago! Tried every therapy known to man! I am 52 years old and there was no way I was going to acccept the fact that I had PMR or to succumb to steroids. I tried Acupuncture, Chinese herbs, massage and prescription strength ibuprofen. Nothing worked and I progressively got worse. By Thanksgiving morning I couldn't get out of bed because I was so crippled in pain. I truly believe that the wonderful people on this site have saved me from really causing harm to myself by not medically treated myself properly. Untreated PMR not only cripples you but can cause serious problems if left untreated. This was confirmed by my rheumatologist. Three days after being treated with 15 mg of prednisone I was given my life back. I work full-time and I am a mother and wife. Life is not the same and I do have challenges but I am on the road to recovery and I am very grateful for the support everyone in this forum. Yes steroids have side effects but they also can save your life. I've learned to take really good care of myself and say no a lot!

  • We just have to learn to love ourselves and our steroids! Love and appreciate this site too.

  • Hello olde,

    I, too, managed without steroids- for about 7 months. I hasten to add, it was through ignorance, not choice, as I thought I had an understandable explanation for my sym-ptoms and didn't realise the risk I was running.

    I had already retired, but in those 7 months I somehow managed to paint the outside of our (timber) house, despite being so crippled whenever I sat or lay down that I'd have to roll out of chairs and bed onto the floor and find a way of hauling myself upright. As long as I kept moving I could just about function, though constantly in extreme pain. The most scary thing, with the knowledge I now have, was the severe head pains I suffered (never previously prone to headaches) which were exacerbated whenever I caught any glimpse of sunshine. I'd like to echo what Dorset Lady has said about the risks of GCA. Had I known that I was risking blindness, I'd have been to see my doctor like a shot.

    Now, I hate the fact that I'm on steroids and all the resultant negatives (fatigue, extreme hot flushes, forgetfulness, mood swings etc), but for me it's still the best of a bad job. I don't know if failure to get proper control of the condition can lead to a worsening of the inflammation than it would otherwise have been, but that would be my fear - perhaps someone more knowledgeable on this forum might know the answer to this? And, the alternative therapies, diet management etc can help to smooth the path on or off steroids.

    Best wishes

  • Not managing the inflammation may increase the risk of other diseases such as cardiovascular disease and even some cancers but I'm not sure it makes the PMR worse as such. The pred has no effect on the real disease process, it just relieves the symptoms allowing a better quality of life.

    Of course, if your GCA affects the blood supply to the optic nerve at any point then you really are playing Russian roulette as you could lose your sight. But you can suffer from GCA (or another large vessel vasculitis) that is affecting other arteries without your sight being at risk.

    Again - as I just wrote on another forum: the pred is not a TREATMENT of anything, it is a MANAGEMENT SYSTEM which relieves the inflammation caused by the real underlying disease, an autoimmune disorder, until it burns out and goes into remission. In PMR that is in up to 6 years or so for probably about 75% - but more than a quarter of patients in some studies have still been requiring pred after 6 years. Many autoimmune disorders don't commonly go into remission - so that is a positive of PMR and GCA. For most of us they do go away sooner or later.

  • Hi. I was diagnosed with PMR at the beginning of last month (Feb 2017), prescribed steroids but not taken them. I also tried eating a diet to reduce inflammation, and had physio massage. Last Friday I did a 2 day apple fast, raw organic apples (as many as you like) and still mineral water, nothing else for two days. Yesterday I went back on a light, mostly fruit and veg diet with a little protein. I feel like a different person this morning (Monday). Although I still have a little stiffness in my neck, it is not that tight band of steel from shoulder to shoulder and up back of neck that I've had to date. My shoulders and neck are loose and so very much more comfortable. My knees and hips are also much easier. I'm hoping I've hit on something that is going to save me. It's something I feel I can do once a week or bi-weekly, it's such a debilitating condition. Hope this might help.

  • Hi Llarmel, shortly after my post saying my next ploy was to try reishi muhrooms I succumbed to the steroids. I have tried an anti inflammation diet for months and done various therapies including masage ,chiropractic and bowen. Nothing has worked for more than a day or so. Then I met yet another person who has had pmr and he said I should do the steroids as the pmr had affected his hands which had to be operated on. I also read online that the pmr can be detrimental as well as the steroids. I really wanted to find better way but began to doubt one existed. Good luck with your alternatives,it will be amazing if you find such a solution which you should broadcast.However at present 3 days in to the steroids I feel much better(15mg), say 70/80% less pain and disability but of course this can easily change.Let me know how you get on.

  • Yes I will. If I'm as long into PMR with no success I'm sure I will resort to steroids too. I just believe the body has ability to heal itself so am doing all I can to help it with diet and other remedies. It's a case of wait and see. I'm amazed at the number of people who have been diagnosed with PMR, I had never heard of the condition before and there doesn't seem to be much advice available for those who prefer not to go down the steroid route if possible.

  • There is not much advice available for people who prefer not to go down the steroid route for the pure and simple reason there isn't anything that works reliably. I had 5 years of PMR without pred - not by choice but because I wasn't diagnosed. I tried a lot of things - and at various times I have tried no alcohol, no nightshades, no dairy and was gluten-free at the time it started. I spent hours at the gym doing aquafit which allowed me to move better but the pain was always there, as was the fatigue and feeling bleugh. 15mg pred was a 6 hour miracle - nothing would persuade me to go back.

    But be careful with that sort of fast - you can easily become dehydrated or deficient in nutrients if you are not careful. Fasting CAN achieve lots of things - but I'm not sure that it cures PMR. Would be nice if it did!

  • I tend to agree with you pro, shortly after my first post I succumbed to the steroids as I'd tried lots of therapies and had been on a restricted low flam diet since boxing day to little effect. The steroids have worked wonders but that doesn't mean they wont cause future problems- met a guy today who has been on them for his pmr for over 4 years.

  • Hope you feel better on the steroids olde Try not to overdo it & give them a chance to work on the inflammation.

    I haven't commented but have been following the thread with interest.

    Best Wishes

    Mrs N

  • I have been on pred for nearly 8 years - I have had problems in the past, weight gain in the usual places, mad hair. But I lost the weight by eating low carb and switching to a different form of steroid though that was done because the Medrol simply didn't work for me, prednisone/prednisolone does.

    I have no signs of diabetes, osteoporosis (I also do not take bisphosphonates), cholesterol is slightly high but my HDL is so high it is misleading, I can lose weight by cutting carbs. My BP is managed with medication but that is more because of atrial fibrillation than pred.

    Pred doesn't HAVE to mean problems when used carefully - i.e. some dietary adjustments and getting to as low a dose as possible without overshooting the mark. I'm not denying there are problems - but they are not as bad as some people believe. And it DOES mean you can life a relatively normal life - which is difficult (at best) without it.

  • Hi olde, it's a question of weighing the pros and cons. I did decide right at the beginning that there was no point taking steroids, getting "better" with them but tapering down to the same body which got sick in the first place so I've been doing all I can to live more healthily. I thought I lived a healthy life before, but turns out there was a lot of room for improvement, one of the major things being stress - now I'm in active stress avoidance mode! I've reduced in about 18 months from my start at 15 mg to 2 mg, and, yes, did pass through a number of side effects. There are some, associated with aging, which will never go away as I aged more than 18 months would warrant, but that's not a big price to pay for having a life without disability!

  • If I find a way I will post for all to see.

  • I have had a week of steroids now and against docs advice reduced from 15mg to 10mg in small stages without much increase in pain/stiffness although a bit more in neck.Will probably keep to 10mg until I see doc at end of two week period.Was interested to find out if anyone had symptoms of any sort for a (long) period before they got pmr. I had a bad left arm for at least a year before hand which meant I couldn't fully extend it upwards. I also had quite a bad itch in groin area and sometimes on shins for a long time(years) previously and never found out what this was all about.This has been much less since the pmr and the steroids.

  • I had PMR for at least 5 years before I worke dout what it was. My blood markers were normal so the GP insisted there couldn't be anything wrong!

    The pred will reduce any inflammation - so if there is any causing the itch it will reduce the itch. I also had an allergy which turned out to be to wheat starch (not gluten) and as long as I don't eat wheat it's fine. But the pred also helped that a lot. It caused an itch in the groin area amongst other places.

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