PMR without Prednisone

Was RX'd low dose prednisone in May because of knee swelling from surgery (fell on ice) in Feb. Felt awful on steroids. Flu-like, joint pain, ect. Tried to Tapered down 2x's to find out I developed PMR. Keep in mind I was a very healthy, active 52 year old woman. I finally got off in sept against Rheumotologist advice. When I told my GP I was RX'd prednisone she was furious. I am trying to manage with RX Advil (600mg) & Tylenol, acupuncture, PT, and massage. Some days are worse than others. Today my acupuncturist RX'd me Chinese herbs that will relax the muscles and replace the steroids that my body is missing naturally. He said my body is Not producing natural steroid because adrenal suppression from prednisone. I'll post after a few days on herbs. Wondering if anyone out there has a similar story?

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  • If you have PMR, Advil and Tylenol really do not help I am afraid. I tried acupuncture which did not work for me, but it might help some people. If you have adrenal suppression from the pred, are you saying that you are still taking it? Pred suppresses the adrenal glands down to a daily dose of around 7.5mg and after that the body has to start producing its own cortisyl.

    Are you sure the flu like symptoms and joint pain were not from the PMR before diagnosis rather than the pred?

  • Hi

    The only treatment for PMR is Preds and yes it does have side effects which do eventually go at lower doses .

    Maybe you where not on high enough dose or long might to get PMR under control .

    As for other therapies I think we will try anything and if it makes us feel better all well and good but it will do nothing for the underlying cause.

    I am 14 months into this long journey and last week missed my preds one day and realised that I still have a long way to go.

    It has to be your choice but I know my quality of life is a 100% better with preds without I would not be able to care for myself or have a life .

    Best Wishes

    Rose

  • I had 5 years of PMR without pred - not from choice but because it wasn't diagnosed. NOTHING would persuade me to go back there - and I have had some interesting side effects with one of the forms of steroid i was given! If it burnt out in the 2 years some doctor think, that might be acceptable but it rarely does - 75% of patients have it for some 4 years plus, up to for life. After 12 years mine is still present and flares on occasions.

    But it isn't as simple as pred is bad, no pred is good. there are multiple sides to this question.

    As piglette has said - advil and tylenol rarely have any effect in PMR and even if they did, long term use of them comes with their own problems. Even "recommended" dose of tylenol can cause liver damage. Ibuprofen/Advil is an NSAID and used more than just occasionally it will pose a gastric risk - not to mention the other long term side effects which are now being identified with them. One lady took 3 doses for her PMR under her GPs orders and ended up in the ER with a gastric bleed.

    Your Chinese herbalist is doing a good sales pitch! Adrenal suppression would mean you would be rather sicker than you say - but I won't go into that here other than to say, if you tapered off pred after a relatively short course, your adrenals are most likely working fine. The muscles may be tight and in spasm - but that isn't the PMR. it is more likely to be myofascial pain syndrome which is common alongside PMR so they won't remove the PMR pain and stiffness which is due to generalised inflammation. I did manage that to some extent with many hours aquaaerobics in a warm pool, Pilates and yoga and the help of my Bowen therapist - but it was a very expensive way of life, financially as well as time consuming.

    PMR causes low grade general inflammation - sometimes more. You say you were on low dose pred - that to me means under 10mg and that probably wasn't enough to suppress the inflammation at the time. You felt ill and flue-y because of the PMR, not the pred. The fatigue of autoimmune disorders doesn't go away with the pred unfortunately. And that unmanaged inflammation is one of the reasons that pred is needed - it predisposes you to other illnesses including cardiovascular disease and even some cancers. Leave it untreated and it will cause damage over time.

    I hear the side effects: Pred causes weight gain - so does PMR when you can't move and exercise for years, as I found. Pred causes osteoporosis - so does PMR, lack of exercise is a major risk factor for osteoporosis. I was depressed, immobile, bad tempered, moody - long before I started taking pred. Pred gave me my life back - I may be a bit stroppy occasionally but not half as bad as I was with unmanaged PMR.

    So, while I really do hope your approach helps and you are able to manage, don't rule pred out altogether. And if you develop GCA, you won't have much of a choice: it is a case of take pred at high doses to start with or risk going blind, so if you have a headache or the other signs of GCA please go to your doctor and please accept pred.

  • Hi,

    As others have said, if you have PMR, then no herbal remedies nor painkillers will control it - they may help a little, but not get to the inflammation that is causing your pain. The only drug that does is Pred.

    Many , like you have tried , but in the end have to concede, however you may dislike Pred, and the thought of it - it does work- and as Rose says gives you back your quality of life.

    Yes it does affect your adrenal glands, which is why a slow reduction, particularly under the dose of about 7mg is recommended to enable your own system to start working again.

    Why was your GP furious about Pred, the Rheumatologist is the expert in the field, and why did you go against his advice? What dose were you on, and how long?

  • Your situation is not unusual -- I was 51 when diagnosed, both healthy and very active (swimming, walks, cycling... :) ) . PMR and GCA are unselective in who they hit, unfortunately! I would agree with all of the above comments, and also suggest that your GP needs to better understand PMR as a matter of urgency because she has you on a very risky treatment regime. To be blunt: your life is actually at risk without proper management of PMR -- which means either steroids or if they absolutely cannot be tolerated, one of the chemo drugs are sometimes used -- because of a far higher risk of stroke or serious cardiac problems as well as, I believe, an increased risk of developing GCA. None of the things you are taking will address that risk, but will only in a very small way, perhaps help with some of the pain. However, the pain of PMR can generally barely be touched even with strong prescription painkillers. I tried a couple of them, yet the pain kept getting worse and worse, before I got my PMR diagnosis.

    One possibility here too is that the illness you felt was actually not the steroids but the PMR not being adequately treated and growing worse (as some others have suggested). You do not mention what the 'low dose' was but it should have been about 12-15mg to start for PMR, and reductions will take about 2 years. But once below 10 mg -- which you get to reasonably quickly -- side effects tend to go away. If you reduced quickly, then the ill feelings you describe would have been the PMR coming back strong.

    I am one of the ones who (knock on wood) have done the full treatment regime -- pretty much a textbook case inasmuch as there are any! except being below what would have usually been considered the age criteria, but increasingly it is clear they are not really true anyway. I did two years of preds, slow reductions, experienced one bad 'flare'(ish) which caused my knees to swell and feel very sore (though a doctor friend believes this was not really a flare but a complication of the joints due to the pressure of PMR). That went away over about 2-3 weeks with some extra NSAIDS to help reduce the swelling, taken with doctor's advice. I am now coming up to 4 years off preds.

    It is an extremely frustrating condition and it may help to know we surely all went through an initial pattern of disbelief and denial and anger, and the search for some other alternative to preds. I spent a lot of time feeling very sorry for myself. Then I gradually came across others -- including friends -- who had similar or far worse conditions and got on with things. I was pretty humbled to realise many really suffered with illnesses they never spoke about. I realised my focus should be on doing what I needed to do to care for myself, educating myself on the condition, finding some kindred souls going through all this, such as on this forum. I learned I couldn't do a lot of things... and to ask for help. These days if I start to feel irritated at someone walking very slowly I kick myself, for that person was once me. I try to help people with mobility issues, lift bags into overhead compartments for others needing a bit of help... that was all me.

    There's much support and help to be had here. But will echo others and say you very urgently need to get on a proper treatment regime to make sure you are kept as healthy as possible while you manage your PMR, if that's the correct diagnosis (there are other differential diagnoses of course and sounds like perhaps you should be referred to see a rheumatologist?). Let us know how you get on.

  • Re-reading PMRPro's good response, I just thought to add: my PMR pain was never fully gone while I was on preds (doctors think it will go away (!!) but for most of us it never entirely goes while we have it... I always had the typical morning pain/stiffness that would gradually resolve by early afternoon but never entirely) and the fatigue is always there. Swimming/aquatic exercise in a warm pool helped me enormously -- I was a longtime swimmer and I found it really was the miracle 'drug' -- it hurt initially in, but if I could slowly put in about a half mile to a mile, gently, the pain would literally be gone for hours and hours afterwards, hence some exercise but crucially, not too much, of some sort, is really important for helping those constricted blood vessels we get with this condition.

    It took another year after finishing preds to gradually get most of my old flexibility back. My shoulders are still a bit shot "thanks" to PMR :( (my collarbone spontaneously & permanently dislocated just before I was diagnosed, which I am sure was related to PMR and joint issues), but I can run, walk, cycle and swim and am learning to horseback ride... in case the PMR comes back and I lose the opportunity! I think it is important to know there can be a life after PMR. :) It is always there hovering now as a concern of course, as with auto-immune conditions, but I focus on doing what I CAN (and want to!) do :).

  • Interested to read about your dislocated collarbone. I seem to have some sort of dislocated rib, have had a painful sternum since about five months before onset of PMR.

  • Thank you everyone. Yes, I guess there is some denial going on... I am normally an upbeat positive person but this has just killed me from the inside out. I work in education and find it a struggle to get thru the day. I was given 20mg taper in may for knee swelling. When I got down to 5mg I felt terrible. I couldn't understand why out of the blue my shoulders n hips suddenly were killing me. My knee was healed but now everything else hurt! I was then put on another 20mg taper but slower. I felt horrible ! I tapered down to 5 and just got off prednisone thinking it was the drugs. I have been off since oct 12 and everyday I get a little worse. On top of pain I am very weepy and feel like life is passing me by. I have an appt with a new Rheumatologist on Monday. Again thank you all. Hugs from NY xo

  • Ah well - tapering like that is BOUND to make you feel awful, that isn't the way to manage PMR! It is a chronic illness - it needs long term pred.

    You start on the dose that manages the symptoms (usually about 15-20mg/day) and stay at that dose until the symptoms are all as good as they are going to get, usually 4 to 6 weeks. Then you take that status as the reference and reduce slowly to find the lowest dose that gives the same result. You stay at each dose for 3 to 4 weeks to be sure it is still enough. When you find symptoms returning - you go back to the last dose that was enough and stick there for a couple of months. Then you can try another SMALL reduction. If it works, 3 or 4 weeks at the new dose, and then another SMALL reduction. It isn't a race, PMR takes somewhere between 2 and 6 years to burn out for 75% of patients - the rest take longer. You will get to a low dose faster and more easily if you go about it slowly and carefully - sounds daft but that's the way it is - the tortoise won, not the hare.

    This is a well-proven reduction scheme:

    healthunlocked.com/pmrgcauk...

    approved of and used by doctors - and a lot of patients on the forums.

  • Hi again

    As I said on another post today, when you have PMR or GCA you have to do everything at a SLOWER pace - whether that be exercising, tapering, or just living!

    The sooner you take that message on board, and sometimes it's totally against how you have lived life to now, the better you will cope with PMR and sooner you will get back to living a normal life.

  • Hi, I am in CT and also a 53 year old teacher. It is difficult because you can't reduce your workload or adjust your hours. ( although don't be afraid to use sick days) I have had PMR for 20 months, diagnosed for 14. I found these wonderful folks when looking for help. My first rhuemetologist had me on a race to zero prednisone and it was a disaster. I had side effects of the medicine, withdrawal symptoms and PMR symptoms. I changed doctors and am getting much better treatment. If you read through my posts you'll see I have had lots of questions and days that I post to vent/whine. I find that many days, especially early on, I haven't been able to do more than work and rest. Slowly over time I've added back in some social activities and gentle exercise. I still have difficult days, particularly around times when I'm reducing prednisone.. I try my best to follow the advise her on tapering slowly, pacing myself, etc. Overall, life gets easier over time and it's always better when taking the proper medication.

  • Saw new Rheumatologist wed. I have some heavy duty inflammation going on. My arms and legs are very weak. The flu like feeling and slight fever is from all the inflammation. They're running a full panel on me. In the meantime she doesn't want to put me on steroids just yet. She gave me 800 mg of ibuprofen RX until the blood work IS back or if Ibuprofan doesn't help. She wants to make sure I don't have a connective tissue disorder. She said it's a good chance it's PMR but she wants to make sure. She said the other rheumatologist did not taper me down correctly that is why I felt so sick in the first place. She said uncontrolled inflammation can wreak havoc on the body such as cancer or even heart attack. So I may have to succumb to steroids just to get whatever's going on in my system under control. Thank u all for all your support. I tried to go naturally but it didn't work.

  • Hallelujah - you have a good doctor there! Hang on to her!

  • Update 2 days later, ibuprofen 800mg barely made a difference. Feel worse by the min. Called dr. She said not all my blood work came back however my SED rate did and it's extremely high. She put me on 15 mg of prednisone till we get all my blood work back. I was asked about environmental issues and told her that in fact there is a black mold problem in my building and my office. I wonder if this caused suppression of my immune system ?

  • Hope this is PMR because then 15mg SHOULD make a difference. Hope so - do let us know.

  • I felt so good yesterday n this am, now I Feel like flu, nausea n aches creeping up again. The dosage is 15mg with breakfast. It's now 5pm and feel awful. I wonder does it take a few days for the steroid to build up? or maybe I'm not at high enough dosage?

  • One or the other is possible - though did you rush around doing all the things that you hadn't been doing? Did you read and note my reply to your other post? The pred is only fighting the inflammation, you are still ill, the autoimmune disorder is still chugging away in the background and will make you feel flu-ey, that is a typical symptoms and for some people doesn't improve a lot for some time, until the autoimmune part of the illness fades a bit.

    I had a dramatic improvement in 6 hours after 15mg of pred - but it took a couple of weeks to get rid of some things and months for others like the hip bursitis. And some things have never disappeared entirely. This is a chronic condition.

    You are still ill, the pred isn't a cure, so behave as if you are poorly and be patient. You have to pace and rest to do your part of managing PMR:

    healthunlocked.com/pmrgcauk...

  • I saw your note after I took over the world yesterday! Now everything makes sense. A bit saddening though. Last night I took a Tylenol PM to help with sleep. I slept until 7am which is late for me so my dose of prednisone will be close to 8am. Much difficulty getting out of bed but fluey feeling is almost gone. With your advice, I canceled everything today except one event. My husband and I have tickets to see "The Christmas Carol" I can't thank u enough for taking the time to write to me. You are truly an angel.

  • Don't be sad! Just go about things slowly and you will get back to close to normal eventually - it will take time though. But in the meantime - take advantage and don't do as much!

    First of all do what absolutely MUST be done - that does NOT include housework! Dust is very patient, it will always wait! Then do what you WANT to do - especially when it is something nice. And if there is energy left - enjoy feeling well.

    If it means not having the "perfect" Christmas, then so be it. It'll come round again. And if there is anyone else to do something - leave it to them.

  • Had my first dose yesterday. Was up most of the night but don't care. I got my life back

  • Good! Now, don't make the usual mistake: you are still ill, your muscles are intolerant of acute exercise. DO NOT GO CATCHING UP THE HOUSEWORK ETC YOU HAVEN'T BEEN ABLE TO DO! If you do - you will suffer because PMR bites back!

  • My blood results were posted to my patient portal today. My doctor has not yet contacted me to go over results. A nurse friend of mine took a look at the numbers and she said my blood work looked excellent, for the one exception my white blood cell count was high. My SED only 19. Is it possible to have a SED rate this Low and have PMR? I was not on steroids when the blood work was done. I was given 15 MG of prednisone before my blood work came back because I was in so much pain and misery

  • Mine was 4, never above 7, in the 5 years I had PMR symptoms before getting pred. Up to about 20% of PMR and GCA cases have SED rates that are in normal range, which nowadays is taken as up to 20 (used to be higher, now it is realised if it is higher, whatever your age, it probably means there is something going on).

    Question: did the pred work?

  • I saw about a 60% improvement. I'm on day 4 of 15mg. I wish I could shake the flu feeling. Still can't lift arms over head. Hips were biggest improvement

  • One of the diagnostic criteria (disputed now of course!) was a 70% improvement with 15mg pred within a week - so on that basis you would probably qualify already.

    If your shoulder problems involve bursitis it will take a bit longer - that was the slowest thing, the hip bursitis.

    Unfortunately the flu-ey feeling isn't a symptoms the pred does a lot about - that takes quite a while to improve I think. And the fatigue - which is difficult to separate from the feeling ill - is something that needs lifestyle changes and pacing and resting. It WILL get better, honestly. But you have to be patient I'm afraid.

  • So I was diagnosed with PMR today. Unfortunately the dr wasn't the one to call me so I wasn't able to ask questions. Horrible right? Time to change dr. I'm scared, angry and don't understand how or why this happened to me. I am very grateful it wasn't RA or Lupus. I'm scared of what's ahead and if I will ever feel normal. Today is day 8 on 15mg and 80% of myalgia has subsided. My shoulders still hurt and can't lift left arm. The worst part is the nausea and full feeling. Been taking Tylenol which helps. Palpitations from prednisone. Trouble sleeping. I have so many questions....

  • Before PMR I hiked, archer and loved to dance. I'm 52 and feel like I was robbed.

  • "I'm scared, angry and don't understand how or why this happened to me"

    Neither do any of the rest of us - but it isn't half as bad as you obviously think. I've had PMR for over 12 years, together with a few little muscular add-ons, and have been on pred for the last 7+ years (I am unusual, there are only a few of us with such a long history, 2-6 years is far more usual). I have a perfectly normal life and feel well most of the time providing I behave sensibly and don't overdo it and take the right dose of pred. I was down to under 5mg for some time and then had a flare in February taking me back to 15mg but am now at 8mg again.

    Be very grateful it isn't RA or lupus - one think PMR doesn't do is kill us and there is no organic involvement to worry about. And one thing it DOES do is go into remission for 75% of patients within about 6 years, sometimes as soon as 2 years. Most of us were active - I was at the gym most days but I didn't give up, I changed what I did. I continued to ski, just it took longer to build up how much I could do (and that was without pred). I was still 51 when I noticed the first symptoms.

    The unpleasant side effects will probably fade over the next few weeks as your body gets used to the pred and then you will start to reduce the dose. You don't stay at this dose for ever, you reduce SLOWLY to find the lowest dose that manages your symptoms as well as that starting dose does. You can help by learning to pace yourself - DON'T rush to catch up with all you didn't do because of the symptoms pre-pred! Your muscles remain intolerant of acute exercise so it takes longer to "train" for an activity and if you overdo it the recovery period is longer. But you can still do loads by breaking activities up into small bites and resting in between. Don't waste energy resenting what you can't do, rejoice in what you can do: acceptance and adaptation is a great part of living well with chronic illness.

    If you go to this post on a forum on another website

    patient.info/forums/discuss...

    you will find a load of links to reliable sources of information and support. They will help you understand what you have and how to live with it. If you then have questions - start a new thread on here and someone will try to help. Posting in the middle of a thread that has been going for a couple of weeks as this one has means not a lot of people will see it.

    I agree that it might have been more polite for your doctor to tell you themself - but since I imagine the subject of PMR was broached when they gave you the script for pred perhaps they didn't feel it was necessary. It might also have exposed their ignorance about living with it! But that doesn't change much between doctors - they've never had it and most haven't taken pred for anything either so can't tell you much other than "This is most likely what you have..."

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