PMR

Hi blodwyn. 

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

There are 3 forums in the UK that deal with PMR. I don't know how many people are active members of this one but there are several hundred on the others - of course there are people who belong to all three and people who joined to try to promote their own agenda. There are others who never post but read avidly - and eventually pop their heads over the parapet to say something. 

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."

Eileen i dont know much about computers but your post above may help me one day , is there a doc or file it can be put in so i csn go back to it when needed.

You can use Word to copy and paste it into  a file on your own computer - if you don't know how ask a friendly child maybe? :-)

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.

Are they ordinary white tablets? If so you can get a pill cutter from the chemist and you can try alternating 12.5 and 15 which may work better/OK. Alternating between 10 and 15 is unfair to ask anyone to do. White tabs come in 5s and 1s.

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. 

Blodwyn I am fairly new to PMR. You sayvyou may have contractedcdiabestus from PMR , also thin hair and bone trouble. I also know therr is a risk of blindness. This is all very concerning . I will have to research as much ss I. Can somewhere. Hope you going to be okay x

Thanks Eileen,

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.

Hi Mary,I hope I haven't worried you unduly.My advice to you is to find out as much as you can.Some of the people on this forum are quite helpful.I did have problems with my eyesight but it was due to my diabetes.I believe the symptoms for GIant Cell Artritis which affects eyesight are quite specific and I did not have those symptoms. My optomerist was able to reassure me that my eyesight problems were due to diabetes and once my diabetes was under control, my eyesight would return to normal which it has done.. I take vitamin D and calcium to protect my bones and my skin and hair condition is more of an annoyance than anything else.

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.   

These are well known side effects of taking pred at higher doses - they redue as you are able to reduce the dose but some people never develop them anyway. I've been on 3 different sorts of pred because of where I have lived and only one, not used much in the UK for PMR, caused me problems. I stopped taking it and used another and everything is back to normal. I know others who used this form of pred who have had no bother. Everyone is different.

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!

Hi Blodwyn,  When I asked my GP a couple a few weeks ago for a prescription for 1mgs tablet - so that I could go to 17.5 mgs to 16mgs rather than 15mgs. Her response was a firm "can't be done - they don't do 1mg tablets. I knew she was wrong from following discussions on this forum and I  confirmed with my pharmacist that they have the 1mg pred tablets (non coated).  Obviously, some GPs don't have a clue but hopefully yours is better informed. My 5mgs are red and 2.5mgs are brown, these are Deltacortrill tablets (coated prednisolone) but they apparently don’t come in 1mgs, these 1mgs come uncoated, white tablets (with the same active prednisolone). I'm tapering down slowly, so far so good, with the help of the 1mg tablets and advice from felllow travellers on the PMR road. Best of luck.

In fairness to your GP she was right if she had given you enteric coated pred (the red and brown coated version). It is apparently not economically viable to make them in a 1mg version. It doesn't bother the company that makes Lodotra - it comes in 5s, 2s and 1s purely for the benefit of reducing! It is, however, relatively speaking very expensive. It is a version so you can take your pred at 10pm before going to bed and it releases at 2am, the optimum time to take pred to avoid morning stiffness.

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.