Hi - I wonder if someone can help me. I have had PMR for 5 years and for the last two years around this time of year, just as I am coming down to 5 - 7 mgs. I have a flare up which puts me back for the whole winter. Last year I had a terrible time with my arms,wrists and hands (took me months to sort) and it has just started again after arriving home from Cyprus last Sunday, but the one question I have is has it ever affected anyone in the foot as I am having pain just above my 2nd, 3rd and 4th toe and the top of my foot is swollen, can hardly put my foot down. I have had an xray yesterday but it feels like the pain I get in my hands which my Specialist says is pmr and my hand swells the same. My GP says it is not pmr but could be a stress fracture.
I know I am rambling but could anyone advise please. Thanks
Your seasonal PMR is very much like mine, where I seem seem to need to raise my dose of pred starting in these fall months.
My pmr began in the early winter, nearly two years ago, and I just had to raise my dosage from 5mg to around 6-7mg this month as it is getting colder.
I am going to try to get my exercise in every day, first thing in the morning, since I seemed to need more pred after having a few sedentary days doing office-type work last week.
By the way, I did suffer a few months of foot pain last year at this time, but it seemed to be more on the bottoms of my feet, and was helped by wearing wider and looser shoes. I was at about 10mg at the time.
Hallo Quiz Girl. May I ask how old you are?
I have had PMR for nearly 4 years, but last year I started having pains that were 'different'. Very painful knees and swollen ankles. I still had the typical pains in shoulders, arms and hips, but there were these 'other' pains. As always I put them down to PMR (we nearly always do)!! However, after putting up with them for a while I made a special appointment with my doctor, then the hospital, and they said I had very active OA now, plus Gout (the swollen big toe and swelling in ankles)!?
OA is usually age related (hence my first question).
A lot of us have trouble round about the 5/6 mgs Pred. I try not to yo-yo with the dose, but flares do happen.
Did you ever come off Pred, or have you been on it for the whole of the 5 years?
I was the same ......on the bottom of my foot but quite a bit prior to diagnosis. It was like walking on pebbles. I had been to a surgeon and had ultrasound which showed up inflammation. I was then referred to orthotics and an insole was made which helped. Podiatrist thinks it has probably been the PMR as it cleared up completely with the steroids.
Your GP is probably wrong - though of course he MIGHT be right - PMR can affect hands and feet. The Leeds PMR/GCA group did some work last year and showed that, yes, PMR does manifest in feet too. However - if it is only in ONE foot he could be right. The x-ray may or may not give an answer! It all depends how good the person reading it is...
Are you saying that every year you go back to a higher dose over the winter, reduce to around 6mg over the summer and then flare again? Has it not occured to anyone that maybe, just maybe, 7mg is the dose you need to stay at for some time as it is what you are looking for: the lowest dose that manages the symptoms? You are never reducing relentlessly to zero - if you are lucky then it will be well into single figures but most people need a maintenance dose for some time, sometimes years, before the underlying autoimmune cause of the symptoms we call PMR burns out and goes into remission. Only then do you get away with no pred.
Coming home from the heat into the cold will almost certainly make you more sensitive to rheumatism pain - here in mainland Europe the German weather forecast warns us of such days!
The other cause of a blip at this dose is that this is where you body has to start making cortisol again - the substance normally made by the adrenal glands but whose production is switched off by the presence of enough or too much pred in the blood - the sensors don't care if it is natural or synthetic corticosteroid.
Thanks Eileen - I am seeing my Specialist on 5th November due to the fact that I have to increase my dosage to 15 mg through the winter and he says he is going to try a one off injection of a higher dose to see if that will help keep my daily dosage lower. Haven't got a clue where he is going to stick the needle though.
I am 66 Constance. This is my second time of having PMR. I originally had it when I was 49 years old but was never diagnosed (I presume because they thought I was too young) it last for two years and I thought I was going to be crippled for life. When it started again they still took another year to diagnose me, even with an ESR level of 92!!
Hi there
One of my symptoms was 1 toe only that was excruciating pain when i walked. You could touch it manipulate it but couldn't put weight on it.
I saw a podiatrist and she made a form to raise it which took the pressure of it which helped to walk till the major symptoms subsided but never away. Sandels were the best no shoes.
Now that I'm on prednisone it still hurts and I'm having a hard time with shoes and winter is here in Canada, had snow last weekend.
Mariane
this all sounds so very familiar.......
Good morning.
i noticed on a post recently that a comment was made about taking pred 3 times a day. I think that sufferers of Ulcerative Colitis may do this. Has there been any trials or have any bloggers done this in the past? What are your thoughts? By the way enjoying 28 C temps here in Brisbane. Feel sorry for you bloggers freezing your pants off in the cold and snow. Love this Aussie weather. Go Australia in the Rugby World Cup. Aussie Aussie Aussie Oi Oi Oi!!!!!
cheers
Kathy
Mariane from Toronto Canada
My rumi told me to take prednisone morning and lunch. After 3 days i noticed that late in the day i was getting some symptoms. Even splitting 2x daily some of my prednisone side effects lesson but not totally gone. In speaking with a friend who also was on heavy steroids but hospitalized for 3 mos they spread her dosage out. It made sence, to long a period from noon to 4-5am so i now split 3x daily.
I'm on 20mg daily, i split 10/5/5
First dose when i wake between 4-when i wake always awake by 530am
Second noon to 1
Dinner 5-6p.m.
I've read an article lately on prednisone reduction below 10mg. Were they reccomend splitting and you then eliminate the afternoon dose till stable then split again.
It works for me for now, will see when i start reducing.
Hi Mariane,
Thanks for the quick reply. So you are saying that this regime gives you relief over 24 hours and you have less side effects? Interesting. If it works it sounds good. I am interested in the medical side of things too. Wondering what it does to the adrenal glands. I am on 10mgms at present. I will wait to see what other responses I get before splitting doses.
Thanks again.
Kathy
For me i i can get out of bed no more up to 2-3 hours waiting for a kick in of prednisone. The symptoms of pmr pain don't start back duriing the day.
There is a site called: The Marshal Protocol and under it is weaning from corticosteroids
They belive in splitting but personally their reduction rate or amount i feel is too high but the logic is there.
There is a Canadian Rumi who has a reduction calander that is even slower than the drop dead slow method which also looks good. The calendar is good but his amounts are higher.
As for splitting i first heard about it on this site and was going to do it but my 1st visit with my Rumi she reccomend it.
So i like splitting will do the no more than 10% reduction with the extra slow calendar and hope it works till I'm stabilize or off.
Off for the night bed time
Hi Quiz Girl
I started with PMR in September 2013 and at the moment trying to reduce from 7mg to 6.5mg( I follow the dead slow method) but before i started the reduction I have had excruciating pain in my right big toe - it goes all along the toe below the nail, to where the toe meets my foot. It is swollen and sometimes when the pain is
reall really bad it is red coloured as though it is hot, I cannot wear shoes with a heel as the pain is too bad - I have had bowens treatment on it which has helped slightly but the pain always comes back - just recently I have found that when I go to the bed for the first few mins in a morning it is not there but it soon comes back with a vengeance - I have now had this for about 3 -4 months and it really gts me down as it is so painful to walk on. I thought it might be a bursitus or even palandromic rheumatism as before the pain was in my right toe it had been in my left toe and then disappeared after a few weeks but this one in my right toe doesnt seem to want to go anywhere and pain killers, 30mg /500mg cocodamol are not having any effect at all - the only brief respite I get is from the Bowens treatment - so not sure if it is PMR or something else and so fed up of wearing flat shoes and limping when I walk - even a massage doesnt help as it is quite tender to touch
Sorry I cant tell you what your pain is but it does sound so similar to mine so if there is anyone out there who can help either me or Quiz Girl - we would really appreciate some advice - probably Eileen will know as she is brilliant and seems to help everyone tirelessly - dont know where we would be without her or Mrs O!!
Take Care x
Hello Maureen,
A short comment. Your toe pain sounds a lot like Gout. Have you been tested for ot it?
It sounds like Gout to me. Started in the same way as you, first time, many many years ago, the pain lasted months and months. After a while the pain disappeared. Every now and again it attacks, excruciating!!!😡 However, it now disappears after 5/6 days.
Just a thought!
Do you REALLY need 15mg for the winter? What I was suggesting is that you have been able to reduce to below the level you need longerterm and that if you stoped at about 8mg rather than continuing the reduction maybe you wouldn't dvelop the flare.
I will merely point out that Scotland should be there - the penalty was an incorrect decision.
Back to business - the best practice for PMR for most patients seems to be taking the entire dose first thing in the morning. This achieves the most effect on the new lot of inflammation: first all the existing excess inflammation must be cleared out with the higher starting dose and then you are looking for a dose that is high enough to manage the new inflammation that appears every morning as cytokines are shed in the body at about 4.30am. As long as you have enough pred present there at the time or soon after it shouldn't take hold as much.
The antiinflammatory effect of pred lasts 12-36 hours, lasting well beyond the amount of time it takes to excrete it from the body. The longer your body is without any pred in it the fewer side effects should develop. The people who are at the 12 hour end may need more later in the day - but taking your pred at breakfast and lunchtime probably won't achieve that. The sooner you get at that inflammation in the morning the less there is for the pred to deal with, so as soon after 4.30am the better. The pred takes 2 hours to get into the blood stream and have an effect and studies have found that the best time to take pred is at 2am and that can avoid morning stiffness altogether and even mean a lower dose is enough.
It all depends on the illness the pred is being used for - in the case of PMR the main problem is first thing in the morning although there are bits all day but they can also be managed with warmth and keeping mving gently. In ulcerative colitis the inflammation is a bit different and 3x daily dosing makes more sense. For many people with PMR taking 2/3 of their dose in the morning gives them a good day, taking the rest mid to late evening gives them a good morning without disturbing their sleep too much. For some people it makes little difference when they take it - they still can't sleep but that tends to be at the higher doses used for GCA.
I had pain in my big toe joints for a few years before PMR really struck - but I really don't think it was gout. It faded with the pred eventually and has never returned. Maybe I have jsut been lucky.