Coming off Prednisolone

Hi, I'm Mazz and this is my first post. I have suffered PMR for 2 years, started on 15mg of Pred, gradually reducing it and now my rheumatologist says my ECR and CRP results are low enough for me to stop Pred altogether. Her preference is for me to take painkillers for the pain I still have, suggesting paracetamol 3 or 4 times a day depending on the pain. This is not working at all, so have been trying different combinations of painkillers without much success. Can anyone suggest a good painkiller or combination of painkillers I can take with good results ? I feel I may have come off the steroids too soon.

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  • Hi Mazz and welcome but sorry you have had to find us. It would appear to me that you have indeed stopped the steroids to soon and that while your Rheumy may feel that your inflammation markers are low enough (and that is the first time I have come across that method of determining that someone is in remission) she should really be aware that painkillers of whatever kind just don't touch the pain of PMR. And how, for goodness sake, did she know that your adrenal system was up to stopping steroids altogether.

    It's just as dangerous to take high amounts of painkillers as it is to take steroids again - probably more dangerous given that steroids really work for PMR. I think you need to talk to your Rheumy and soon. If your inflammation markers are rising again then you need to see someone, your GP, your rheumy nurse, your consultant, as an emergency.

  • Hi Polkadot

    I sure am pleased that someone else is aware that painkillers do nothing for PMR. I was getting paranoid, thinking I am over reacting to my illness and that I should be getting better by now. I was so pleased at first to stop the Pred but after two months I feel worse than ever especially at night and feel I should go back on the Pred straight away. I know that painkillers in large doses can cause stomach problems but I have been given Ranitidine to counteract this. I don't have an appointment to see my Rheumy until end of March so will see my GP as soon as poss. Thanks for advice.

  • Hi Mazz,

    Your ESR and CRP may be low, but they should be if you are taking the correct level of Pred to control the inflammation. However, that doesn't mean the PMR has gone - it's just being controlled! Don't know where some of these Rheumies get their ideas from, they are fixated on the 2 year cycle, and seem to automatically assume it's gone then. Very often it isn't, the more realistic timeframe is 4 years! Even longer in many patients.

    As I've said before, it comes along out of the blue, stays around for a few years - varies from person to person - and then goes into remission on it's own account. It cannot be cured, which some doctors seem to think, it can only be controlled.

    No matter how many, or what combination of painkillers you take it will not control the inflammation caused by PMR, the only thing that does is steroids.

    You don't say what level of Pred you are on at the moment, but if you are getting pains, then I would suggest you are not taking enough, and should be taking more rather than stopping altogether.

    If you following your Rheumy's "preference" then I'm sure your markers will increase, maybe then she realise she's wrong, but it's you that's going to suffer, not her.

    Next time you see her, take an account of what has happened since your last appointment, and someone for moral support, if necessary, and convey to her that her plan isn't working!

    Take care.

  • Hi Dorset Lady

    I know for sure I still have PMR and I was surprised when my rheumy said I could come off the Pred due to my low ESR and CRP results. I have been off the Pred completely for 2 months now and although happy about this at first, thinking the painkillers would work, I now feel worse than ever and would go back on the Pred tomorrow if I thought I should. I always like to put my trust in doctors/specialists etc but now feel very much in doubt about what to believe and I am feeling anxious about it all. I will most certainly be telling her at my next appointment that her plan is not working for me. In the meantime on with the painkillers. Its good to know I can come to this group for support. Thanks.

  • Yes, we should be able to trust doctors, but sometimes, as patients, we may know better.

    As both PMRpro and I said, OTC painkillers won't touch PMR, I tried for 18months before diagnosis, and PMRpro even longer.

    Take care.

  • DorsetLady,

    Can pineapple juice help. It has strong natural inflam properties. Tumeric and ginger may also help.

  • Hi Clive,

    They may help in some inflammatory illnesses like arthritis etc, but not enough to control the inflammation of PMR.

    Unfortunately. as yet the thing that works is steroids.

    I think in Kate Gilbert's book she states that Aloe Vera helped her reduce, so other things may do as well. Anything's worth a try, but not sure there's any hard evidence.

  • ncbi.nlm.nih.gov/pmc/articl...

    is about bromelain which is the active substance in pineapple juice and its benefits.

    I imagine it does no harm. Unless you have a problem with pineapples. Though equally, whether there is enough of the stuff in a pineapple isn't clear.

  • What dose were you on when she told you to stop pred? That is significant and important to know.

    But really - if you are on pred and the ESR/CRP are normal, that is what she should be looking for, the pred is enough to suppress them. It does NOT mean the underlying cause of the PMR is in remission, it merely means you are taking enough pred to manage the inflammation being produced. Only when you have tapered SLOWLY to zero and there is STILL no return of pain and stiffness can you suggest the disease is in remission.

    Painkillers for PMR? Pred - nothing else works. And if there is any chance of a painkiller working in PMR it sure as eggs is eggs won't be paracetamol. It would need to be an NSAID - and non-steroidal antiinflammatory.

  • Thanks PMRpro for your good words/comments on my question re the painkillers after coming off pred. I was down to 1mg when she told me to stop them, even though I told her I was still in considerable pain on 1mg. I think I need to go back to her very soon and see if she will agree to me going back on the pred, even though it caused me severe ACNE !!! Can't win can I.

  • If you were doing well on just a couple of mg that is such a low dose no doctor should be worried. You might need to go back to about 5mg to get things under control though - but that is a question of suck it and see.

    For me? Acne is horrible - but PMR pain affects everything you do. No contest.

  • May put myself back onto 5mg a day. seeing GP tomorrow so I'll see what she says. Yes acne is horrible, not something I want at 70yrs of age, like being a teenager again, but didn't have any pains in those days !!!

  • You may well be able to manage on far less - just need the 5mg to get things under control.

    I suppose I was lucky - even Medrol didn't give me acne! A nice black beard...

  • Good idea to start back on 5mg for couple of weeks. Lucky you not to get acne, but I don't want a nice black beard LOL ....

  • It was very fetching...

  • and it would hide the acne should you be unlucky enough to get it.

  • :-) :-) :-)

  • I'm no Medic. You can cut the tablet in half. Maybe it could help.

  • I also get acne as a result of the pred (apparently it's a common side effect which can be treated with antibiotics). On the positive side, having a spotty face makes me feel like a teenager again! ;-)

  • I did not realise Acne is a common side effect of the Pred, Oh dear can't win can I. Did not expect to get acne at 70 yrs old but its clearing now I am off the Pred. Rather have the spots than ache all over though.

  • Cataflam helped me before seeing RA Doctor. It was a Golden Bullet cure for pain forme.

  • If diclofenac helped pain that well then is is very likely it isn't due to PMR. And it has some pretty heavy-duty side effects when used long term, particularly increasing the risk of cardiovascular events i.e. heart attack and stroke.

  • Where on earth is this woman coming from? As the others say:

    1. Pred works for PMR other painkillers are a waste of space.

    2. The fact ESR and CRP are OK means that the pred has got the inflammation under control NOT necessarily that the PMR has gone and you can stop pred. Your pain also plays a part.

    You need to take pred so you are comfy again, I cannot believe how bad this lady is.

  • Thanks Piglette. Most of you are telling me that painkillers don't work and as you say are a waste of space. So where do I go from here ?? Will make an appointment with my Gp to see what she has to say about it all. I really need to be more mobile again, like I was on the pred as my greatest pleasure is walking my dog Alfie, and he misses just as much as I do, the long walks in the fields and along the beach.

  • Mazz I would suggest you push for pred, it really is the gold standard for PMR. I don't know why your doctor is so keen for you to stop taking it as you were presumably on a pretty low dose anyway. Doctors do seem to be mad keen for us all to stop taking them though. You really do not want to take things like Tramadol for any length of time. It is an opiod and is addictive, it would be interesting if it does work for you though. I must admit it had no effect whatsoever on my PMR and I suspect people who take it may have some other pain problem as well.

  • Thanks Piglette. I am certainly going to push for Pred again when I see my GP this morning. I won't leave the surgery without it !!! It was my Rheumie who told me to come off the pred and take painkillers so hopefully my GP will have a better understanding of what I am going through......

  • Good luck with your GP, at least you have someone on your side. I really do not know what is up with some of these rheumies, they seem to have been body snatched and had their brains swapped out.

  • Brains????

  • In Wales there is a beer called Brains and I had an ashtray with their strap line on it. It is Brains You Need. Perhaps we should get a few ashtrays and hand them out to some of the rheumies mentioned here! We could even have a special prize.

  • Yes, piglette, 'Brains' either for medicinal purposes or the enlightenment of Gps / Rheumies is a great idea!

    I'll drink to that :-)

  • The Germans advertise alcohol-free beer as an isotonic sports drink for regeneration...

  • Alcohol-free beer? That's an oxymoron if ever I heard one! :-D

  • Better than being the moron who drinks and drives!

    It isn't that bad...

  • Return of The Body Snatchers? Intelligent brains ripped out by Authority figures and substituted with Data Cards - was George Orwell right after all?

    Don't have nightmares! ;-)

  • This made me smile ! Much prefer my GP to my Rheumie. She was brilliant yesterday and I actually got a whole 15 mins with her, usually just 10 mins at most. She listened to all I said and I mentioned some of you and your comments. She seemed interested. Anyway now back on Pred, only 5mg but I think this might just do it.

  • Tramadol works for me....1 every four hours. 50mg.

  • Don't take these long term I believe quite addictive

  • Thanks, I will mention Tramadol to my GP tomorrow.....I need something fast !!

  • Most people find it doesn't work in PMR.

  • It didn't work for me. Just made me feel weird! It wasn't an improvement!!

  • You won't need it if you get back on the Prednisolone. That is the only painkiller you need!

  • Back on the Pred.....feel like dancing this morning !

  • Mazz, why not put on a CD and dance to Simply Pred, Jimi Hendrix's Little Pred Rooster, or maybe UB40's Pred, pred Whine..? ;-)

  • Now your talking ! Anything by Simply Pred would get me going, might even sing as well !!

  • Just don't try table dancing, your family might get the wrong idea ;-D

  • mark jamin, Glade you are in the groove with Music. Let's Rock the pains away, hopefully without all these Meds.

  • Oh thank goodness! Happy for you. What unnecessary stress.... X

  • Thanks Sheilamac, feeling good !!

  • Hi Mazz,

    My wife, Estela, had PMR symptoms for 5 months before she was officially diagnosed with PMR. All the painkillers she was prescribed did not work one bit. Upon diagnosis, she was started on 15mg of Pred. 3 weeks later the inflammation markers were gone. After 2 months of diagnosis, she was dropped to 12.5mg; a month later to 10mg. They PMR symptoms were almost completely gone. 5 months after the diagnosis, she was told to alternate daily between 10mg and 7.5mg. It was at this point that her symptoms came back. The symptoms are all back, especially since she is now at 5mg, and no inflammation shown in the blood tests. She is diabetic so we are trying to keep the Pred as low as possible, but because the SED RATE and CRP are normal, the rheumatologist is reluctant to increase the dosage. He referred her back to an orthopedist suggesting something else is causing the pain. She has undergone an MRI on her worst pain area, the right shoulder and shoulder blade. We are awaiting results, but we feel all these doctors are just guessing.

  • If she has localised pain in just one shoulder - I would be more suspicious that it was bursitis or myofascial pain syndrome, both of which are often found alongside PMR. Possibly a rotator cuff problem. PMR does tend to be bilateral.

    However - it isn't uncommon for the ESR and CRP not to rise again in patients who are still on pred, even if it is too low a dose to manage the inflammation. I would suggest you try to find a doctor who will treat the patient and their symptoms and not the numbers - whatever the numbers say, the symptoms are king. Always. If pred takes it away, then that suggests it is due to inflammation. It can be both inflammation AND something else - and the something else can often make the PMR worse because of the stress of pain on the body. Sort it out and the patient manages on a lower dose of pred.

    However, diabetic or not, there is no virtue in taking too low a dose of pred - either you take enough to manage the pain and also accept and manage the side effects or you decide not to - and don't take any because eventually the inflammation will build up and you will be in the same state either way sooner or later.

  • I'm interested in taking too low a dose of Pred. Recently I have struggled with aching in shoulders, neck, sometimes top of legs and initially my Dr suggested not PMR symptoms & I should continue to reduce down from 5mg. I've kept on 5 for about 3 months but as feeling so achy phoned Dr to request a blood test as felt the markers must be up. The results confirmed this. Dr suggests upping to 8-10 but I'm trying 6. I'm so loathe to double my dose. Is my inflammation' building up' ? Am trying so hard to battle this out.

  • Usually the best thing to cut a flare like this is to add about 5mg to the current dose to get control of the inflammation quickly, especially when it has been ignored for so long. Just adding 1mg may not be enough - at least go to 7 or 8mg. Often you will be able to reduce fairly easily once it is cleared out. At 10mg it may happen in a week and then you can just drop to 8mg straight away. Ig you stick at 6mg it may never be enough and you get nowhere.

  • So confused why it's taken me so long to reduce from 10mg in March 15 to 5mg in Nov 16, ie 1 yr 8 months but if I now up dose from 5 to 10 I can reduce more easily. I'll evaluate in morning with the aim of going to 8mg. Your advice much valued.

  • Because your disease has been more active in the past - the only reason you MIGHT be able to reduce faster from 10mg now is because you have just overshot the dose you need to be comfortable. This is just an example, but 7mg might be slightly too much, 5mg not enough and allow symptoms to spill over but 6mg is perfect. If you don't take quite enough pred there will be a little bit of left-over inflammation each day which over time adds up, just like a dripping tap will eventually fill a bucket. Going up to 10mg will clear that out easily and then you will need the slightly higher dose to keep it cleared out.

  • Thanks a lot. I am visiting GP in half hour to see what she thinks to it all. Just hope she will allow me back on the pred. I will pass on comments from you to her as you are a mindful of information. Wish you were my doctor !

  • I realised very quickly at medical school I didn't want to do medicine after all!!!! Healthcare yes, be a doctor? No!

  • Taken 8 today & seems much less achy than yesterday. If I continue for a week then reduce say .5, see how I am?

  • Good Luck ! Hope to be feeling less achy tomorrow if GP allows me back on the Pred.

  • Give it at least a week! Don't think about reducing until you are feeling as well as you were before the flare.

  • It is a battle isn't it, never sure what to do for the best. I have so much pain in neck and shoulders and feel quite achy generally. Really don't feel confident coming off the steroids, feel I need to re-introduce them back into my body but what dose to start at I just don't know.....maybe 5mg ?

  • Thank you for your reply, PMRpro. The pain is actually bilateral on the shoulders and the back of the upper legs/lower buttocks. But the orthopedic must have not wanted to recommend an MRI for all the painful areas, he asked my wife which are hurt the most, and she felt compelled to say the right shoulder, maybe because that is the arm she uses most and feels the pain more in that area.

  • That sounds very suggestive of myofascial pain syndrome. Do you have access to a good sport physiotherapist or sports massage therapist?

  • Hello, really liked your reply as your wife Estela has virtually gone down the same route as me, although fortunately I do not have Diabetis. My PMR symptoms were almost gone on 7.5mg but since reducing them further my symptoms started to come back. But because my markers were really low my rheumatologist said I could come off completely ! That was 2 months ago when I was down to just 1mg of Pred. My worst pain as your wife is my right shoulder and shoulder blade. Much to painful to lean on my arm or drive for very long and no painkillers ever take away this pain. Its there constantly. After reading your reply I am wondering if it could be something else causing the pain. I would be interested to know the results of Estela's MRI.

  • Hi mzz70-70,

    Yes, it sounds like you and my wife are on the same painful path. Her orthopedic appointment for MRI results is the 16th. I will keep you posted. Thank you.

  • Good Morning, just wondering how your wife got on yesterday and the results for MRI. Hope all went well for her.....Mazz

  • Hi Mazz,

    Thank you for following up. The orthopedic saw the typical degeneration (typical for age 64), so he feels that she needs to have this handled as PMR. Simply by the fact that the pain is bilateral, both shoulders and both upper legs. The ortho knows that the rheumy is reluctant to keep her on Pred too much longer, so he is calling Estela's GP to authorize an increase to 10mg, such that he can then adjust her diabetes meds accordingly.

    Hope that you are doing well yourself!

    Joe

  • My Rhuemy prescribed Arcoxia 60mg , it's a rheumatoid arthritis drug , I find it works for me while reducing one tablet keeps my pain away for about 3 days but I'm sure like any drug if you use it to much your body be cones acustumed to it so I try to hold out as long as I can it is an n-said so it helps control my inflammation also which has been very low for nearly 12 months now, I've heard people say you can't use N-saids when on steroids my Rhuemy said it was rubbish While on low dose steroids it's fine , I am down to 3 mg of pred from 20 in about 20 months . Hope that helps 👍😀

  • Hi Gaz and thanks for your reply. Really has been a struggle for me the last two months since coming off the Pred completely. I have not heard of the tablets Arcoxia 60mg, I guess you can only get it on prescription but its worth mentioning it to my GP when I see her tomorrow. My Rhuemy advised me to take only paracetomol, 2 tabs, 4 times a day but as I said in original post, they don't do anything for me and cannot see the point in taking them anymore. Maybe its back on the Pred for me.

  • I should have said Arcoxia is a brand name the drug is called etoricoxib, positive your GP will know about it as it is commonly prescribed for Rhuematoid arthritis and severe osteoarthritis , hope I have been a help 👍

  • Thanks, I have written it down to take along to surgery tomorrow. I will try anything.

  • PMR though they say usually disappears within 4 years is never cured! I was diagnosed 11 years ago I was on and off prednisone for 4 years my condition seemed to be maintaining and I've been off prednisone for almost 7 years although I felt like I was in "remission " I was never really totally pain free the low amount of pain I experienced was something I could live with taking anti inflammatory such as Advil I researched anti inflammatory foods changed my diet and exercised which kept the pain and symptoms to a minimal but again never truly gone!!

    Almost seven years later it is back with a vengeance my new GP since I've moved to another state has been provided with my past records still will not treat with prednisone because my blood markers are normal she is referring me to a rheumatologist where I fear I will be subjected to a battery of tests like a lab animal

    I sit here with immense pain and fatigue that is starting to affect my daily life and job I am now looking for new GP and rheumatologist

    Bottom line PMR is never cured as in my case proves this

    Please do not subject yourself to being reliant on pain killers as they are addictive and they don't help the source which is inflammation try anti inflammatory foods and exercise

    I know one doesn't feel like exercise when in pain but the movement is good for you

    I am hoping to find someone who knows more about this disease who can help me now as this is not living

    Sorry to be a downer just want people to know there is no cure it can come back

  • Oh dear you are frightening me now ! I cannot bear the thought of having PMR for years and years like yourself. My Rhuemy told me most of her patients are completely better within 4 years at the most, my GP said the same. I think you are very unlucky and I do feel for you. There is no cure as such but most research has said it tends to burn itself out, those that are more fortunate it could be just two years or for others up to 5 years. Am I very wrong in believing this to be true ? I am certainly interested in trying as you suggest anti inflammatory foods.....I am already looking into it, very interesting so thanks a lot for that suggestion.

  • It is the same for all autoimmune disorders - they never go away altogether, the potential for a relapse is always there. The good news though is that less than 10% of patients do have a relapse at a later date. And the second lot is rarely the same as the first - in both directions...

  • I really am learning a lot from this group. I honestly thought/believed this PMR would just burn itself out, never to return. But you have given me hope by saying less than 10% of patients have a relapse at a later date. Just hope I am one of the lucky ones.

  • If you have to have an autoimmune disorder then PMR is not a bad one to be landed with. It does no damage to joints and is manageable, It doesn't kill. For 75% of patients it burns out in up to about 6 years, for some as early as 2 years although they aren't as common as doctors would have you believe. It does seem to go more smoothly if you reduce very slowly and never allow a flare to get hold. Anything that gets you into a yoyo pattern with your dose is to be avoided.

    But on the whole? Things could be worse!

  • You are so full of information, just what I needed to hear, thanks.

  • Well put PMRpro - this advice should be wrote large on the front cover of every GP's and Rheumatologist's 'Big Boys' and Girls' Book of The Management of Polymyalgia Rheumatica'. :-)

  • I agree !!!

  • I had the same story Mazz. My first rheumatologist had me taper from 10mg in a 2 week period until I was at 0 and then told me to take prescription strength Advil 800mg. Within two months I was almost crippled from pain. I will never forget waking up on Thanksgiving morning unable to get out of my bed. After 2 Rheumatologists and finding this group I finally have a handle on my condition. Even my new rheumatologist tried to taper me a bit to quickly causing me to flare and have to go back up to 15mgs. My doctor mentioned there is a reduction guideline that they all follow (I'm in NY) which obviously is not working for me. Low markers indicate that the steroids have the inflammation under control. A Slow and steady taper seem to be what works. I developed bursitis in my left shoulder because of PMR which at times can be quite painful. Physical therapy will help with that. The way I know my PMR is not being controlled is when both sides of my neck or shoulders or back or hips start to hurt at the same time. For me the flu feeling is horrible when my inflammation is high. When I am at the right dose which seems to be 15 mg at the moment, my left shoulder which has the bursitis is the only thing really bothers me. Uncontrolled inflammation is not good. Call your dr now!

  • I,m convinced the blood test don,t give a true measure of how you are doing, on my last visit to the Rheumatology dept I was told my pain was nothing to do with PMR as my blood test showed no problems, I was given a physical check which was me sitting with my arms bent with my elbows pointing outwards, she pushed down on my elbows " is that painful ? " No , " well its not PMR then " take paracetamol.

  • What a bizarre diagnostic check!

    The lab values are a guide, and a guide ONLY. But there is a generation of doctors who were brought up with the advent of the labs, they probably started their training about the same time I went to medical school and in the following years. I decided medicine wasn't for me and went into the labs - so perhaps I am more aware than they are of the limitations of the markers they use in PMR. The symptoms are always king - and it is the entire picture they should be looking at. But clinical skills went downhill once too many decided the labs could give them numbers that answered their queries - except, they don't.

  • Well said PMRpro - numbers (in isolation) don't necessarily reflect the facts and / or the bigger picture. I know this phenomenon in many other contexts. Management by data? - don't start me off!

    With often ambiguous and contradictory ESR / CRP markers in the complexities of PMR and Pred to manage the symptoms, maybe it's a case of some inexperienced and / or ill-informed GPs / Rheumies not knowing what to look for (or worse, just finding what they want to look for?). Mmmm.. :-/

    As you rightly say, Symptoms rule in the effective management of PMR - as I've experienced and many others have confirmed here.

    Keep up the great work in advising on these posts.

    MB :-)

  • On another forum a patient who has been on pred for a year (GCA dx'd by an neuroophthalmologist) , still at 7.5mg with symptoms, just about managed with 10mg, has just been told a year on pred is enough, her markers are normal so she can't have PMR/GCA and she is to reduce by 2.5mg every few days to zero. I'm sure you can imagine where THAT has the potential to lead!

    The mind boggles where HE learnt his medicine.

  • There still needs to be a lot more understanding from GP's and consultants about PMR. I had never heard of it until I was diagnosed and my GP told me I was only her second patient to get it. Frightening stuff eh !

  • Shocking... :-(

  • Hi Marie (my namesake, although friends call me Mazz)

    It seems a big drop from 10mg to nothing in just 2 weeks, no wonder you are in so much pain. I have reduced slowly from 15mg to nothing in 2 years, but I still have much pain and like you its such a struggle to get out of bed each day. I feel I may have to go back onto Pred but I want to try an alternative if possible i.e a painkiller that actually works. You say you have tried Advil 800mg without success so that one's off my list ! It seems pretty clear to me from all the replies I have had that NO painkiller really works and the only way to keep it controlled is by taking the Pred. I just hope my Rheumy sees it that way ! Thanks for your comments.

  • This is the link to the latest recommendations for the management of PMR:

    rheumatology.org/Portals/0/...

    Recommendation 1 says:

    "The panel strongly recommends using GCs instead of NSAIDs in patients with PMR, with the exception of possible short-term use of NSAIDs and/or analgesics in PMR patients with pain related to other conditions (eg, co-existing osteoarthritis). No specific recommendation can be made for analgesics."

    Of course - the next excuse will be "but it isn't PMR". That I can't help with - except to point out that if a moderate dose of pred works, is that not a good start? It isn't their pain - but I personally have no desire to live in that sort of pain for the next x years. I did it for 5 years, it was no fun at all and robbed me of most of my mid-50s. For some of us PMR lasts much longer and there is no way to know in advance who it will be. Life with pred is far preferable to a life of pain for so many reasons.

  • Amen.

  • I have been on Rayos ( Time released prednisone ) since December 9. I take my dose at 10pm and because it is coded releases around 3 AM. 15 MG seems to be the magic number for me right now. Dr. recommends three weeks on this dose that I put myself on because the dose she put me on wasn't working. I will leave myself on this dose for one month and see how I feel then. I work full-time in education and I am a mom & wife. I am able to function somewhat normally at the rt dose. I KNOW WHEN my PMR is not controlled. There is no dr than can base lifting your arms to see if you hurt or looking at labs to really know how you feel. PMR is a tricky little devil. My dr does the same arm/thigh lifting exam thing but she also listens to me (sometimes). Sometimes I need to recommend what I am learning to her about this condition. It seems like nobody is that familiar with this condition. The more you read (get the book Polymyalgia Rheumactica and giant cell Arteritis: a survival guide second edition by Kate Gilbert ) and the more you tune into this site you will find you are your best advocate and not alone and only the people who have experienced it firsthand could ever understand what you're going through. There is hope and lots of support here. Way better than therapy. Sending Healing Hugs

  • I quite agree, Marie. I'm fortunate with my Rheumy (Dr Zakout in Bristol UK), he explained the tapering process clearly and set a rough timescale to reduce the preds - but also acknowledged that 'the patient usually knows best' and was happy enough with my gentle tapering schedule and understanding of PMR for me to self-manage the reduction process. But from what I'm reading here it seems to be Luck of the Draw in terms of either GPs or Rheumies really listening to their patients and / or advising them appropriately. Quite worrying really ... :-/

    I also agree with you about the wealth of expertise and support on this site - it's invaluable and has helped me considerably on the frustrating and often unpredictable journey of PMR.

    MB :-)

  • Time released Pred seems a good idea, don't think we can get them here. It must be so hard for you and other folks that have to work and suffer PMR. Really don't know how you manage, no wonder you feel the need to stay on 15mg, the magic number. When I was on 15mg not only did the PMR disappear almost altogether but my eczema and my weekly headaches also seemed to go overnight. However on reducing the Pred gradually the eczema started to rear its ugly head again but not nearly as bad. If only we could all just stay on 15mg, we would be very happy, active people......but life's not like that is it. I agree Marie, being on this site is way better than therapy.....healing hugs to you too.

  • If you are in the UK, Lodotra is available on private prescription (not particularly cheap it must be said) and there are a few people on it. The NHS used to cover it for RA, but have discouraged its use on cost grounds. It is available in Germany and Italy. There are people in the USA on it as well - even more expensive there but some seem to have health insurance that covers it.

  • Did not mean to frighten you and yes as stated by others it is a very small percentage of patients whom experience a relapse after such a long period of time

    The study I read was 12 out of 34 patients

  • I frighten easily !! seriously though I hate anything to do with illnesses that I don't understand but with all the replies I have had I am feeling more optimistic. You are a great bunch !

  • Mazz, Fright = Anxiety = Stress. Stress doesn't help PMR - as DorsetLady says, 'it thrives on it'. Knowledge is Power - you're in safe hands here.

    Try to keep smiling on the journey. Laughter is a great de-stressor not least because it takes your mind off other things! ;-)

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