Polymyalgia Rheumatica
Posted , 19 users are following.
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.
0 likes, 37 replies
liz12234 leef
Posted
Danrower leef
Posted
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
r.d.s26296 leef
Posted
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.
EileenH leef
Posted
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.
BettyE leef
Posted
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.
Anhaga leef
Posted
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.
doni89057 leef
Posted
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.
Michdonn leef
Posted
Tinapoly1 leef
Posted
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.
Tinapoly1
Posted
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.
ptolemy Tinapoly1
Posted
EileenH Tinapoly1
Posted
No wonder you were so bad the next day - if you had good results splitting the dose it showed the antiinflammatory effect doesn't last 24 hours for you (it varies anything from 12 to 36 hours depending on the person).By dropping the night time dose the doctor was setting you up for a return of morning pain and stiffness. Not to mention it was far too big a reduction - top experts say not more than 10% of the current dose and that was 33%!
You can help with the pred weight gain - including the fluid retention - by eating a low carb and low salt diet. I lost 35lbs with low carb, I haven't used salt in cooking for years but as soon as we eat out for a couple of days I gain a couple of pounds that is purely fluid retention and it takes 3 or 4 days to get rid of!
stanley36717 leef
Posted
diana21296 leef
Posted
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.
Tinapoly1 diana21296
Posted
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 .
diana21296 Tinapoly1
Posted
I am sure someone will send you the link for the Dead Slow Nearly Stop (DSNS) method of reducing pred. It acts like a sleeping pill for me and I sleep like a log but everyone has to find their own best time to take it. It's a long hard slog to get off it and certainly not in a year. This is far too fast. Some doctors really don't know what they are talking about!
EileenH Tinapoly1
Posted
This is a link to the Homepage of this forum:
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
The first pinned post is for the Dead Slow and Nearly Stop reduction approach that diana mentions - I worked it out some years ago because I couldn't reduce easily without problems and it has been refined by the experiences of other patients since.
The perception is that a night time dose prevents people sleeping - in fact it depends on the person. Some people don't sleep even when they take it all in the morning and for others they can take it all late at night - and sleep like babies! It is something each patient has to try for themselves - as I explained in the other reply, in some people the antiinflammatory effect doesn't last the full 24 hours and splitting the dose helps them. If taking it once a day works for YOU - there is no point splitting the dose so you should always try the single dose approach first as it has other advantages too.
From the endocrinology point of view taking a year to wean off pred is a good idea. However - PMR lasts much longer than a year for more than 80% of patients. Less than 20% of patients are able to stop pred without a return of symptoms in under 2 years. It is a chronic autoimmune disorder that takes an average of 5.9 years to burn out - and unlike a lot of autoimmune disorders it DOES burn out and go into remission for some 75% of people in up to 6 years. The speed you reduce the dose at has nothing to do with the duration of the PMR - all the pred is doing is managing the symptoms until the underlying illness has gone away.
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
It also explains that if you are now on 7.5mg you are on a low dose, about the same as the body would be making anyway - and there are few long term side effects at those doses and below. Don't rush - just reduce VERY slowly.