I was diagnosed with pmr in July 2017. My pain was in so many muscles in the back of my calves, thighs, back, shoulders and neck so much that my husband had to help me turn over in bed and assist me to get out of be - excruciating pain. I had been prescribe Prednisolone 15mg initially and dropped by 5 mg in the next 8 weeks with enormous pain returning. I returned to 15 mg and pain was acceptable and almost gone by mid afternoon. I am now on 6 mg and can cope with the morning pain, but find that the pain has moved to front muscles now. Thigh, groin, shoulder blades, shoulder front, and neck and upper chest. I have trouble getting in and out of a SUV and need a strap to help lift my left leg into the vehicle (Australia so drive on the left hand side of roadway). Pain is worse when I just sit, so I had to give up my job as a judge's assistant - can't sit for hours in court without excruciating pain on rising.
I thought that three things may have triggered the onset of PMR.. Sensodene toothpaste, electronic bed or stress. Anyone with any other triggers they may think contributed to the onset of PMR.
Sounds to me that you are reducing far too quickly, most people take 2 or 3yrs to get of pred, are you following any plan. The recommended dsns plan is really good.Whatever People or Drs say there is no hurry. It took me 3 1/2yrs to come off it and have been off 2months. Im sure there willl be better qualified people along with their comments to help you. Mine started after a Chest Infection something that i had never had before. Good Luck
I have had two bouts of PMR. One at 53 which was precipitated buy a fully and severly torn rotator cuff from a fall. The second was precipitated by significant psychological stress. Both of these were life-changing traumas.
But who of us has not had life-changing trauma? I've learned just simply not to care that much.
More of a "what will be, will be." attitude.
Best of luck
Oh you poor soul...
It's really horrible this pmr, and as most of the posters here have unfortunately found out , that there is no quick fix...
I learned the hard way, not to reduce quickly. My rheumatologist took me down from 25-20 after Two weeks, I was in agony and started from the beginning ,which is now down to 22:5 mg ...
I'm having a few side effects from the prednisone, ( round face and sore burning fore legs) but I can handle that ...
There are more posters here who can give you tremendous advice. Eileen H. She is so kind and helpful.
I use nothing but Sensodyne toothpaste - it was the only sort that dealt with my sensitive teeth that developed along with PMR!! And the PMR came first. If electronic beds were to be a major factor - wouldn't you expect many longer term patients in hospitals to develop PMR? But stress - yes, that is clearly a factor in the development of many autoimmune disorders though quite why isn't entirely clear. There is no single factor that leads to PMR developing - it is an accumulation of factors that stress the immune system in some way or other - infection, trauma, emotional and physical stress all can affect the immune system and eventually something is the straw that breaks the camel's back and the immune system goes haywire and turns on the body as if it were "foreign".
I agree with the others - you have been persuaded to reduce the dose far too fast and that has allowed the symptoms to flare up as the amount of pred is simply not enough to manage it day to day. You don't take a course of pred and then taper to get off it. You are looking for the lowest dose that gives the same sort of level of relief as the starting dose did. You seem to have gone a long way beyond that.
The median time to reduce to 5mg is said to be 18 months - which obviously means a lot of people take much longer than that. PMR has a median duration of 5.9 years - to have got to 6mg in under a year is unusually fast. The early return of pain was possibly steroid withdrawal because of too big a drop but could also simply have been that the disease activity was too high. Therein lies your problem I suspect.
I agree with liz. The reductions sound too fast and your symptoms do rahter confirm this. You followed instructions but they have not worked so re-think needed.
15 is often where we are started but for many that is not enough. I was started on 30 with magical results but it took three years to get to zero and it was not a straight line curve, as they say; several ups and downs. When PMR came back after five clear years my GP said try 15 but I had to go to twenty to get complete pain relief. This time it took five years but I did get there. I cannot identify any trigger in my case.
No one knows what causes PMR, but there does seem to be an overwhelming common factor - stress. And as we all find different things stressful even that doesn't tell us much.
I agree with the others that you have been encouraged to reduce too soon and too quickly. We end up with a lower total dose of pred in the long run if we take enough to deal with initial inflammation properly, and then maintain a slow enough taper so the inflammation never builds up again. We are looking for the lowest dose which keeps us as pain free as we are going to get, until eventually PMR goes into remission.
Btw, my pain is very well controlled but I now find it impossible to sit still in a meeting for more than an hour without becoming extremely uncomfortable and fidgety. This is after three years on pred, and at a dose below 5 mg for two of those years.
Sounds to me like they have reduced your dose far too quickly, but there are other more expert opinions here than mine. As far as cause, we simply don't know. While many AI diseases can be traced back to a known physical or emotional stress, that isn't always the case, and can be coincidental. As for me, I have absolutely no idea. I was fine, healthiest and happiest that I had been for a long time, no particular thing happening, and I simply woke up with it one morning. I thought I had tweaked my back in a little exercise class I was doing, but it got quickly and dramatically worse as you all would expect.
Hi leef, looks like everyone believes you reduced too quickly, I agree. We want to use the least amount of Prednisone on our PMR journey. But we must control the PMR pain. Believe me it is not a race, take your time, but I believe first you must be PMR pain free before you start to taper your dosage. Then I use the DSNS method, never more than 10%. It works for me, I been PMR pain free since last June. Try to stay active, positive and smile. ☺️
The week I started a new thyroid medication since my 26 years of Synthroid stopped working so my endocrinologist prescribed CYTOMEL and that 1st week I called my doctor & said something horrible is happening to me . I can't stand ,sit ,or walk without the worst pain of my life. My fiance had to help me and initially it was so bad I was screaming and I can tolerate pretty horrible pain like fibromyalgia & natural childbirth of 2 giant babies. I wish there was some way of letting Cytomel makers know what it triggered in me. My C Reactive Protein when from 50 to 90 to 94.8 & there it sat as 4 doctors had no idea what was wrong with me as I suffered for 3 1/2 months & never put me on Predbusone until I finally went to my rheumatologist. So sorry that you got this horrible disease too. Wishing you a full recovery.
Around 5 years ago I went in for surgery to open a blocked artery (which failed) and came out with PMR, which took over 4 months to diagnose. Then I received a false negative for GCA which cost me a portion of my eyesight. I take 4mg of pred a day. Less than that and I have headaches.
I like you could hardly move and pmr came on after the shingles jab. I am down to 7.5mg after 2.5 years and have been reducing half mg every 4 weeks since 16. Started on 30 as bloods so elevated. The only way I could keep pain free was to split the dose of pred 1/3 early evening and 2/3 during the night after a small bowl of natural yoghurt. As the drops are getting harder fatigue wise, I am now staying on a dose for 8 weeks and once under 7mg will use the DS method. Don't want any flares and prefer to go slowly but surely. My neighbour took 5 years to get to zero and then 2 years later she had pmr again but 8mg was enough to abate the pain. Took 7 years in total to be symptom free. Slowly but surely is the name of the game here and it's my ambition to get to 5mg in 2019 and stay there for a bit of a breather.
Hi, Leef
I too was diagnosed in July of 2017. Your story mirrors mine verbatim. Every time I taper down, the symptoms return with a vengeance. I’m still at 20mgs with no chance of tapering anytime soon.
There has never been a known cause for PMR and there is no cure. I’m a habitual researcher and everything I’ve researched on PMR and GCA (Which I also have) comes full circle to “no known cause”. Five to seven years tends to be the time span, so we’ll be swallowing prednisone for a very long time.😔
At what point does the pain return? How do you reduce?
leef, i think the triggers are varied but the underlying propensity for PMR seems to be genetics/DNA. People from Northern Europe or carrying their genes are at the top of the list. I am of the opinion that anything that hammers your immune system can trigger it. So it could be many of the triggers that Eileen posted including one other that weakens your immune system...father time. My trigger was training in 90 degree (F) heat in Florida while 61 preparing for a 100 mile charity ride. Two weeks after the ride the general soreness became pure agony. Once clear of PMR (32 months) I completed three more Century rides over four years without an issue. Then after being sedentary for about three years I got a relapse with different symptoms. The only trigger I can think of was a head infection a month earlier following an airplane ride that forced my congestion from a cold into my ear canals and even infected my eyes. Good Luck and slow down the tapering of the prednisone.
I couldn't agree with you more. I've had 2 bouts, as I have mentioned, precipitated by trauma, physical or psychological. We're born on a lead sled, the top of an icy hill, and were destined for the path, largely by genetics. Notwithstanding poor lifestyle choices, of course. Florida resident here.
Good luck to all
My feeling has always been that it my immune system that is hammering ME!
I have had two sessions of PMR ( no GCA ) five years apart with no stress triggers that I can identify.
It's getting on for five years since I got to zero Pred. but I was taking it for eight years all told with all the well known ups and downs but in all that time I only once had a cold and one UTI so consider myself fortunate so obviously my immune system was still functioning pretty well even while being subdued by the steroids.
Apart from all the usual childhood illnesses I have had an illness free life for which I give thanks but is that because my immune system works overtime and was PMR the price I payed when It turned on me?
I was an Infants school teacher and we all know what that means; you're in touch with bugs on a daily basis. So, while I was working, my immune system was challenged continually which kept it on its toes. I remember my vet saying that my dogs that went to shows probably didn't need yearly boosters like the ones that stayed at home as pets or in retirement because they, too, were meeting bugs regularly and thereby keeping their immune systems up to scratch.
There is a Nobel prize awaiting anyone who can work out how we can have sufficient immunity to keep us clear of infection but not so much that it turns to bite us.
P.S. I forgot to add that when my c reactive protein went down from 94.8, which is off the charts since even a 12 is bad , my rheumatologist said continue taking the 5 mg of prednisone in the morning but stop the 2 1/2 mg .at night. The next day I could hardly walk and the day after that PMR attacked my shoulders for the 1st time since I had it in my entire pelvis, and hips besides the back of my legs where it attached to my torso. I had to go back on right away. You have to taper yourself off so slowly at about a 1/2 mg. at a time . I want so bad to get off of prednisone since I have gained 35 lbs.and my feet are so swollen with fluid along with my tree trunk ankles in addition to having Cushing's Syndrome where we get the giant ,swollen face along with the giant trunk ,& camel hump where the neck meets the back but if I take it slow I pray I go into remission after 10 months of this. Not hopeful of that after reading that so many on this sight are on for 5 or 6 years. Taper off very slowly Leef.
Diana, What is the DS method ? My endocrinologist explained to me why I am so much more fatigued after being on the steroids 7 months when initially it gave me the energy I had in my youth. He said the longer we are on Prednisone the more our adrenal glands shrink and hardly function. He said going off prednisone very slowly (like at least a year or so ) helps the adrenal glands to make a slow but sure comeback. He also told me that I should not be taking my 2nd dose at night since it keeps you from sleeping as much and that most do better taking the entire dose together so I combined my 2 1/2 mg. at night with the 5 mg. in the morning and I am sleeping better now & my pain hasn't come back. It was my rheumatologist that had me splitting it up .
I took after my Irish father who had immune problems & rheumatoid arthritis . I was told while visiting Ireland that they have more rheumatoid arthritis than any other country in the world along with skin cancer which I have had over 100 ,starting at age 20 but I blame that on living in Florida and my dark skinned Mom taking us too the beach since we were babies & then we went fishing in the ocean for most of the day when it was my turn since I have 6 siblings who hardly have any immune problems or skin cancer but they came out a bit darker than my white ,freckled skin so I think me getting more of my father's Irish everything along with many autoimmune problems is not a coincidence . WHERE ARE YOU IN FLORIDA ,ANDRE ? I lived most of my life in Hollywood ,Fl. ,just north of Miami, & south of Ft. Laud. Also Coral Springs and Boynton Beach.