Five months after diagnosis of PMR and starting Prednisone, I am off. I went for a 2nd opinion and the 2nd Rhuematologist wanted me off Prednisone as quickly as possible because he didn't think I had PMR regardless of the symptoms of crippling shoulder, hip, and hand pain. Not sure what he is thinking, but he is correct! I think my PMR has burned out for the most part. No shoulder or hip pain. I still have high CRP number and can feel the inflammation, though. I'll be interested what my Dr will come up with this week at our scheduled appointment.
This very closely followed the same path I had with "PMR" 6 years ago as far as time it took to "burn out". Now, at 53, I will begin to try to understand what exactly it is that i have/had. As the symtoms seem to mimick PMR, but is quick but occurs multiple times. Maybe, I can prevent this from happening again, however, I know this is wishful thinking... It is quite a mystery and my new Dr seems very interested in what I have/had. Maybe Lupus.... Whatever it is seems to be a vascular systemic illness. Just glad it goes away and symptoms can be controlled with Prednisone.
I will continue to lurk and provide updates periodically on my new findings in hope that my experiences may shed some light on other sufferers.
I really would like to thank PMRPro, Mrs Nails, Poops, Aunt B (Blurryeyed), Dorset Lady, NicK, Snazzy, Jinask, HeroNS, Sheffield Jane, SCAT, for your knowledge and insights. This is truly an incredible team of knowledge. I know there are many others, but just can't remember everybody at the moment.
No idea where it says it but there is comment that patients who are off pred in a year or less are more likely to have relapses. I have said for some years now that there are at least 4 or 5 different versions of PMR - you are one end of the spectrum and I am at the other.
But in the nicest possible way - I hope you never see us again
Oh yes, do please lurk. I know it’s a pain to be a medical anomaly but it is helpful and interesting to others. Who knows you might change someone’s life.
Don't be a stranger , let us know what their conclusions are when they make them.
As lots of people join the forum much like yourself wondering if they have PMR but then being told they don't , and don't get a definitive answer , but have these recurring pains cleared up rather more quickly with shorter periods of Pred , it would be good to know what it could be to suggest to other people asking questions in the future with the same problem.
Maybe Lupus ? But I can't remember you having the other symptoms of skin rashes , gastric issues etc.
Maybe a severe firm of reactive arthritis ? This can be similar and present for just a few months after an injury or infection.
I assume they will be doing the full gamet of blood tests like Rheumatoid Factors / ANA etc. now.
Glad you a feeling better and able to come off the Pred without too much withdrawal , and hope you get those answers that might help you prevent the same thing happening again in the future.
Hey Aunt B. Not sure what it is, but symptoms were pmr. No doubt. Just glad a dr prescribed me those little white pred pills. Really thought I was dying. Also really glad I found this site and started eating healthy and quit drinking so much and stop pushing my body when it didn’t want to be pushed. Lol . Quite a learning experience. I’ll know better next time around
My case sounds similar to yours - not that I've had PMR multiple times (I've only had it once), but that I was off pred very quickly - in under 8 months.
I had severe pain/stiffness in shoulders, arms & hands (worst in the mornings); started on 15mg pred mid-July 2018; it had an immediate effect - I was pain free in a couple of days; tiredness lingered, but I was able to continue working. By the beginning of March this year I was down to 0 pred and have been ok ever since (fingers crossed!).
Like you, I'm so grateful to all the experts here who so patiently share their knowledge and experience, and offer guidance to 'newbies'!
Pmrpro ma be right! There are different flavors of pmr. Some go quicker than others. Jus curious, did something trigger yours? Such as injury or surgery?
Yes, there definitely seem to be different flavours of PMR! I had no injury or surgery prior to PMR. If I clutch at straws, I had a trip away for work that was moderately stressful, plus I had a niggling sore shoulder for a few months - could they be connected? Who knows?!
What about you - do you think something triggered your PMR?
First time knee injury. 2nd time appendectomy triggered it. I too have a bad neck and nagging shoulder problems for years. But the injury and surgery triggered mine without a doubt. I imagine stress would do it too
For sure; any time you have emotional or physical stress,or both, it's enough to set you off. I recently tripped over an open dishwasher door in the kitchen, fell backwards, and reinjured my shoulder, collarbone and bicep muscle. Probably rotator cuff, but no fracture or bruising. I had been doing very well until then. Now in relapse mode.
I can tell you there are some diseases noted in scholarly articles that discuss conditions that mimic PMR or have atypical presentations. Usually this happens to men. Your doctor should be doing that research, but seronegative Rheumatoid Arthritis and neoplastic syndromes were mentioned. Another involves calcium deposits and viral infections.
I hope you just got lucky, and you will never have a reoccurrence. But it does seem like your doctor needs to consider other diagnoses.
Positive ANA can mean you could be suffering from an autoimmune diseases like Lupus , Rheumatoid or infection induced reactive arthritis and other small vessel vascular conditions , or thyroid issues, or , that your PMR type is autoimmune related and further flares can occur because of it.
It can also be caused by certain types of mixed connective tissue issue or infections too , which could be the trigger for the PMR Autoimmune response.
If you had your ANA early in your diagnosis it is definitely worth having that retested to check if you still have positive results now your PMR and Pred use has finished.
Finding out exactly what is causing a positive ANA , if you still have one , is really important for you now , to make sure that if it is a chronic condition it can be monitored or treated appropriately , and you know the best preventative measures you can take to reduce the possibility of a flare up of PMR or any new autoimmune symptoms in the future.
Good luck with it but definitely don't give up getting some extra medical help and investigation , it will be a great help as you move forward.
I am glad that you feel much better and PMR or whatever that caused the pain is in remission. I don't know about "triggers" of PMR, but I can tell you that I have done very heavy training, full of extended max load sessions just before my PMR onset, so perhaps take it easy for a while, especially that you " still have high CRP number and can feel the inflammation" from un-diagnosed cause. Good luck.
Hang on in there and keep pursuing to find out ' what'.
Like PMRpro , I think you are probably on a spectrum of PMR and also a person who perhaps has an 'orphan illness' (at the last count there were 800) not yet identified.
Keep updating please.............we all learn all the time. You can be a 🕵.
I was just meeting an old friend and she said she had PMR after a surgery and was finished in a Year! I was skeptical and jealous a tiny bit I have to admit!... but hearing this from you I think it must be true that some can be off more quickly..than others. I wonder sometimes if I am so suggestive that my doctor saying it would likely be two years will bring me just to two years.... hmmmm. I am so happy for you (not jealous!) but keep an eye on high markers. there is a Dr. Brooke Gardner who has a diet "smoothie shred" for autoimmune disease (she had lupus) which I follow (partly) and think is great. Perhaps it will bring those numbers down!
Thanks Bonnie. I feel so bad for people who have this, particularly when they are in such terrible pain and don’t realize the miracle of prednisone. I am off the pred for 4 days without any disabling pmr pain. But with my high inflammation, something is still lurking. Whatever it is may be the root of the pmr if not pmr itself teatering on a flare
The work by Matteson and co showed quite a variation of durations of PMR:
"Only 19% of patients discontinued glucocorticoids by 1 year after the onset of PMR, 37% discontinued by 2 years, and 50% discontinued by 5 years. Only 58% discontinued glucocorticoid use by 10 years after disease onset. "
This, together with the lack of extra side effects due to pred at PMR doses, seem to me to be two very significant pieces of info that need to be shared with doctors who are terrified of using pred and who insist PMR lasts only 2 years.
Yeah I noticed on 2.5 mg of prednisone, there were very little to no noticeable side affects. Some drs seem scared to death of pred, but it sure the hell better than being in chronic uncontrollable pain.
Yes, please keep us informed as it might fit one of us. Thanks
I seem to be rapidly going PMR free also. It is now Sept 10th, and I was diagnosed six weeks ago, after suffering all the symptoms since April 2019. It started with a severe stiff neck and then evolved to shoulders, upper arms, thighs, hips, knees, & buttocks. Just a terrible pain that put me in the bed for weeks. I had minor surgery on my eyes in February, but I had fallen in love with a man who I discovered was cheating on me, and that put me into a dreadful downwards spiral. I think the stress of it all caused it. Anyway, I had been on the Paleo diet for almost six months, and had lost 86 lbs and felt very good when it started. I went to see my Doctor for the neck pain initially and he put me on a 10 day step down dose of Pred. which of course healed the neck pain within one day...However, with three days of finishing the course of pills my whole body froze up. I couldn't even get out of bed the pain was terrible. Managed to get into my car and go see my doctor again who wanted to put me on another 10 day pack of Pred, which I didn't take. I decided to Google my symptoms and discovered it might be PMR. Took myself back to doctor and explained it all to him and he referred me to a specialist who took blood work that ruled out RA, and Lupus, also ruled out Lymes disease. However, my SED was way up in the high 90's and so I was put on 15mgs of Pred. and within 24 hours was pain free and feeling ok again. I stayed two weeks on 15mgs. one week on 12.5mgs, one week on 10mgs, and am now on 7.5mgs. Doctor wants me off as fast as possible and said that he also wants to do it this way just to confirm PMR and not something called Prednisone withdrawal from the original 10 day step down pack that was prescribed originally as sometimes it causes adrenal shutdown, so we shall see how it all goes. I am keeping my fingers crossed.
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Very good ukusa! Lost 86 lbs, that’s a lot of cheese! Prednisone withdrawal... never heard of that one. Sounds like bs to me. Just my opinion. You will soon find out your adrenal glands will be trying to become active again and you will be very tired during this transition. Don’t rush your sickness by trying to stop pred quickly. My dr noticed something with me that didn’t quite match the pmr diagnosis. If you start having pmr pain, please don’t fight it... treat it properly.. also you should consider getting another set of eyes on your diagnosis. More information on you about you will only help you. Going untreated pmr and uncontrolled inflammation can lead to gca and potential blindness
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You need to quit with calling something quite well known to a lot of people BS. Or at least google it. Later!!!
Might I suggest that instead of being quite rude to people who don't know something you try explaining what it is? That is how this community functions.
Prednisone withdrawal is a very real phenomenon - however, as I explained below, it does not usually happen after a short taper of corticosteroid. It tends to happen after a reduction in dose that is too big and when you have been on pred for some time. Unfortunately the symptoms of steroid withdrawal tend to resemble the disorder for which the patient is taking the pred so it is difficult to decide if the disease is flaring up because the dose is too low and often patients are told to return to their previous dose unnecessarily. It is one of the reasons that we bang on about the slow reduction approach once you have been on pred at above 10mg for more than a few weeks.
I'm sorry - but that sounds like a mix of misunderstandings. Unless I am misunderstanding what you have said.
A short course of 10 days tapering dose as the pack was will NOT lead to adrenal shutdown. You need to be on a dose at above about 10mg for several weeks or a shorter time at a higher dose before the adrenal function is affected.
You cannot tell if you are "rapidly going PMR-free" as long as you are taking pred at any dose. The starting dose is 15mg or thereabouts - but that is because it is a dose that is likely to manage the inflammation without messing about. Then you reduce the dose slowly to find the lowest dose that manages the inflammation that is created daily in the early morning as well as the starting dose did. This is a process called titration, often done to establish the correct dose for a specific patient with certain drugs but usually starting with a low dose and increasing until the desired effect is achieved. In the case of pred and PMR this would be confusing and potentially take a long time to achieve relief while giving the patient pred that was doing nothing. The speedy response to this moderate dose is also another building block in the wall of evidence that this is likely to be PMR as few other conditions would fit that pattern.
The "lowest dose" may, if you are lucky, be only a few mg. At 7.5mg you are still on a relatively high dose and plenty for most patients to manage the symptoms. There have been considerable numbers of people who did not have a problem until 5mg or well below and some have reached 1mg with control of symptoms - but they reappeared as soon as they stopped even such a low dose.
Thanks for your reply. That information is all very sad to know. I have read that Prednisone withdrawal syndrome has been experienced by patients who have been on the drug for as short as a 10 day step down dose as well as an extended length of time. No one seems to know why, other than the theory that prostaglandins play a role...The following info helped me understand more.patient.info/forums/discuss...
Prednisolone is used for many conditions & patients are given 5day/7day Courses & they now come pre packed. There should be no reaction following such a course as they are taken for a specific reason to calm down inflammation of one kind or another.
There will always be an exception to every rule but there are probably other factors to take into consideration, such as many previous short courses or inhaled steroids for asthma so then the waters are muddied.
Often people are told it is steroid withdrawal when in fact it is because stopping the pred taper allowed the symptoms of the illness for which they were taking it to re-emerge. Especially when used in something like PMR ...
Thanks Pro , that was exactly what I was thinking.
Yes , steroid withdrawal is a real thing .
Mild changes can occur after short courses but the severe rebound of the same pain and symptoms suffered prior to a course shorter than 14 days is not usually considered to be just steroid withdrawal rather a return of the original health issue you were being treated for.
It's how many Doctors help themselves ( rather than the patient as it makes them feel horrible ) make a positive diagnosis of the issues they think a patient has , like PMR .
A short course of under two weeks then a rebound in symptoms as a diagnostic tool.
Such severe Steroid Withdrawal Syndrome described above only usually occurs after a very high dose of IV steroids of an inappropriate type in a hospital enviroment, or the rapid reduction or stopping without a taper of steroid treatment after a longer period of drug use at high doses .
It's definitely a warning sign that someone needs further diagnosis or needs ongoing treatment if they suffer extreme symptoms after a ten day course of any medication , including steroids , unless it is thought that they have allergy or intolerance issues for the drug they were given.
And I agree .
I wish people would stop jumping on the BS accusation wagon , and being rude or aggressive to each other if they disagree with a reply or are offended by someone's comments.
It's much better if people say politely they have been upset by others comments and explain their point a little further .
And for the person whom gave unintentional offense to apologise and do the same.
Rudeness is counterproductive to the pain , stress and symptom levels of us all , readers and posters, and especially stressful to the person whom felt so angry that they felt provoked to speak rudely in the first place .
Healthy words make healthier forums , lively debate doesn't have to feel like PMQs in Parliament.
You’re right, Aunt B. I am sorry ukusa. I could have been more supportive rather than my nonsensitive opinion that obviously struck a nerve. I wouldn’t have responded as such if I knew it would bother you. I really hope you can get a good handle on your illness
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Totes forgiven, my friend. I am all very new to this, and to be honest "in denial". I just can't believe this PMR got me. I was a health nut, I never smoked or drank. I lost my husband suddenly three years ago after 39 yrs of marriage, and all that is left of my family lives back home in England. I was coping well, but I guess I will have to realize that I might not have coped as well as I thought. I just want it to go away, but..... that's probably not gonna happen overnight or any time soon. Glad to have this site, and the wisdom of all who have suffered before me.
Don't worry , you are preaching to the choir , many of us were much the same , even if we were I'll previous to PMR/ GCA it felt like a final pie in the face .
It takes time to get used to but we are all here for you.
Keep us updated with how you get on in your own posts as we would like to know what happens and help if we can. Hugs x
To me it's like they all should be in nappies when they throw tantrums ...if that isn't too insulting to babies....rhubarb rhubarb rhubarb....
I know a lot of people who have been successful. Most of them, it has to be said, having used a tapering method along the lines of Dead Slow and Nearly Stop and DL's simple taper.
I love it myself in the right place . Perfect for conjuring up our disbelief in World Politics but not really appropriate for the atmosphere of a health site geared to making you feel less stressful and get better xx
Keep us informed...I also had all these symptoms 8 years ago and at that time a rhuemy said it was related to thyroid so I started on levoxyl and a short two month dose of prednisone...this time around I’ve been on pred for a couple years now and new doc says PMR...makes me wonder..also first time around it lasted five months at the most...
Just for accuracy, pmrpro said there were different spectrums of pmr not types
Sure thing worm! Everything I read leans hard toward pmr. It may be like what pmrpro said that there are several types. Some last long and some are shorter lived. But hopefully we can get to the bottom of it
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2nd opinion resulted in mctd
Prednisone alternative?
Update after weaning off prednisone 
What happens if Prednisone isn't taken for PMR?
