PMR
Posted , 8 users are following.
I am suffering from PMR since last year. I am taking prednisone for about a year now. It is a low dose like 5 mg. I am also taking fresh turmeric, fresh ginger and beets along with other useful blends. I think fresh turmeric root is very helpful.
0 likes, 14 replies
Nefret mimie
Posted
I'm glad that you have found something which works for you. A fair number of us have found that anti-inflammatory food is useful.
You would seem to be doing well if you are on just 5mg now, that is a faster reduction than most of us achieve. I hope you continue to do well.
blodwyn mimie
Posted
However,I sincerely wish you continued success.
Gymjen blodwyn
Posted
I too did not know about turmeric root or any anti inflammatory foods.I started on pred in March and started on 30 mg ,reducing by 5 mg every 4 weeks or so,now on 15 mg but this week have got the back ache so maybe have come down too quickly.
i will research turmeric root and see what I can find,Imhad never heard of PMR,and quite surprised to hear so many people have it,enough for a forum any way .have allot to learn
EileenH Gymjen
Posted
But PMR is the most common inflammatory arthritis in older people, about 3/4 are women. We aren't few in number - just have not been a particularly powerful lobby in the past: mostly over 55 and so mainly retired. But by the time they are in their late 70s about half of people have PMR - grandad and grandma called it their rheumaticks...
If the pain is too bad try going back to 17.5mg and don't reduce more than 1mg at a time in future. No reduction should be more than 10% of a current dose - and even that is too much for some.
MrsO is the "anti-inflammatory foods" guru here and it does make a difference.
Blodwyn - don't reduce more than 1mg at a time and even spread that over a few weeks: this is how I do it and have got to below 5mg after never managing below 9mg before!
"You say you have lurched from one flare to another - your reduction scheme needs some attention! A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used a table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis."
mary238 EileenH
Posted
EileenH mary238
Posted
I don't think there is anything on this forum to do that - the PMR and GCA UK northeast support group forum does and it is already there in "my" section.
blodwyn mimie
Posted
I'm desperate to reduce as my skin is very thin now and my hair is breaking off. I'm having my bone scan next week.I was diagnosed with type 2 diabetes 2 months after starting pred and it's possible it was triggered by steroids as I was fine 6 months earlier.So you can see, the sooner I can get it down the happier I will be.
EileenH blodwyn
Posted
If you have coloured pills (red or brown) they must NOT be cut - they have an enteric coating to protect your stomach but my technique probably will work there too if you start with a big enough gap.
mary238 blodwyn
Posted
blodwyn EileenH
Posted
I was being prescribed red tablets as I sometimes have reflux but lately they've been white ones.Not sure why it's changed. However I will get a pill cutter and see how I get on.
blodwyn mary238
Posted
I had been pre diabetic for some years with 4 out my 5 younger sisters already diabetic and my GP thinks steroid treatment just pushed my over the edge.Find out as much as you can.Eileen H and MrsO are quite knowledgeable.
EileenH mary238
Posted
I have never had a raised blood sugar in 5 years of taking pred - but I also eat relatively little carbohydrate. Restricting carbs also seems to help avoid the weight gain that most people experience with pred.
The risk of blindness is if you develop GCA - and that is more likely if you don't take pred to treat PMR. You just need to be aware and if you develop a new sort of headache that doesn't go away, pain or cramp in your jaw when chewing or any visual symptoms then go straight to your doctor - NOT an appointment in a couple of weeks!
liam15153 blodwyn
Posted
EileenH liam15153
Posted
The problem with taking a mix of enteric coated and ordinary is that the ordinary sort is absorbed into the blood far faster than the enteric coated - there is a difference of up to 5 hours. If it works mixing them for you that is great - but I'm just saying this as a warning that it may not work for everyone.
My reduction scheme should work with 2.5mg drops if you go extra slowly, possibly taking even longer for each step, repeating each step perhaps.