Quiz Girl

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.

Thanks Dan.

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!!

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.

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

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.

Have increased to 8 mg today, will see if that works.  Tks

I had to do this starting yesterday, and from my experience 1mg either way does make a big difference when I am at 6mg as I have been of late.

For examle, I reduced to 5mg last week for two days, but this week I started needing more then the 6mg that I returned to on Saturday.

So I actually slept a little better last night already, just a day after increasing 1mg to 7mg.

My PMR pain after 21 months (and at 6mg) is now almost entirely located in my chest area, most recently affecting my spine to a small degree, and my lower neck as well.

Get yourself a Bowen therapist!!!! Honestly - I'm not joking. When you get such localised "PMR" problems they are often linked to something else. Reduce their effect and you can manage with a lower dose of pred - even if what works best is a local cortisone injection.

I didn't think of that, probably because my pmr ran it's course through so many pairs of joints, so seemed like just the next chapter going to the ribcage.

Also, when my symptoms flared noticeably, I also had pains in my wrists which though minor, seemed to be the familiar effect of a slightly too-low pred dosage.

I have been doing very well with my hips and shoulders for quite some time now, so I do at least an hour of bike riding in the hills every day, and with no sort of aggravation of symptoms as a result.

The ribcage issues are mostly when lifting my head while laying on my back, causes strong pain in the front of my ribcage, and also causing sharp pain in my ribs when I sneeze. Still also having difficulty turning my head fully to look in back of me when putting the car in reverse.

To me that sounds like a muscle problem in mid-back that is possibly trapping/irritating a nerve to cause the referred pain into the ribs. It might not be - but it isn't typical for PMR. I had those sort of problems - especially the not being able to turn my head properly - and all have been sorted by the work on my back where the muscles were as hard as boards because they were in spasm. I used to accept them as part of PMR until I learnt better. As I say, it may not be but it is worth a try.