Never being able to reduce the pred??

Thanks for the info...I do reduce very slowly...0.5mg 4 to 6 weeks...it just seems that approaching 10mg the pain slowly kicks in, but I think maybe I should do it even slower...I have posted on here before that I get very blurred vision if I take all pred at once, so have been having 8mg with breakfast and 2/3mg with evening meal....not sure how else I can take them, or if this is adding to the problem.  I do get palpitations when taking over 8mg, but I am used to that...it`s the vision/balance problem that is difficult...Thanks again

I wonder if you could answer a query in my mind that niggles at me!

my sister has RA...and sometimes I wonder if I have it instead of PMR...my fingers are swollen along with all the other symptoms...aching hips/ankles/neck ect....but if I was tested for it in the beginning..and it didn`t show RA marker, how would the rheumy or me know....she did ask me on last visit if my fingers were painful because they were swollen, to which I answered no.  I did respond initially to pred (15mg 3 years ago)...but can`t now get under 12mg without pain....is there any other way of testing to know the difference?  thanks for any input....

I had swollen fingers with PMR so it can happen. Hands and feet can be involved in PMR - Leeds showed that last year. RA and PMR can present in very similar ways and it is not unusual for them to get confused - something like 1 in 6 patients given a PMR diagnosis to start with end up having it revised to something else, Whether that is because PMR can morph into another arthritis isn't know - but PMR is really only the name given to the symptoms of an underlying disorder. It could be a cancer, severe vit D deficiency and several other things and all of those should be looked for first. When all those have been ruled out and the patient responds very well to a moderate (not high) dose of pred then it is fair to accept this is probably the PMR we talk about here - but even then, not necessarily. It all sounds a bit vague I know - but there is no 100% accurate easy test that will show yes or no.

The Quick and Kirwan paper we keep talking about (the Bristol paper) describes using 15-20mg of pred as a sort of screening test for their query PMR patients: they give one week of 15mg pred and look at how the patient's symptoms respond to the pred starting and finishing. In typical PMR there is something like a 70% improvement in the severity of the symptoms overall within that week which then return in a similar period after the pred is stopped. Patients with other forms of arthritis - which can appear very similar - don't have this typical fairly dramatic improvement, their conditions stays much about the same over the entire time, with maybe a slight improvement during the pred.

Having or not having the rheumatoid factor doesn't mean you don't have RA - you can have seropositive and seronegative RA. There are some sorts of arthitis where you wouldn't usually have a positive test but all it does is provide another piece in the jigsaw to decide what name to give to what you have. Autoimmune disorders give rise to all sorts of symptoms and they overlap. Not enough is yet know about autoimmune disorders to say for sure whether it is the same thing that is happening in several different forums of arthritis with slightly different effects. In some forms of vasculitis the names have been changed within recent years - often from a person's name to one that indicates what is going on more scientifically now they can detect, identify and measure some of these things. Patients sometimes get upset that they can't be told a name but something like "general connective tissue disorder" is written on their notes - not their doctor's fault he doesn't know what to say, no-one does.

Have you already tried reducing VERY slowly - for example, using the "Dead slow and nearly stop" approach we talk about? That has helped a lot of people get much further than they were able to before. A half mg drop is spread over a few weeks - and their bodies don't notice the change and don't protest. I had been stuck at 9mg, now I'm down to 4mg using that sort of approach. It sounds slow - but it isn't really if you don't have to keep going back up because of pain.

If that doesn't work then I imagine at some point your rheumy will suggest trying methotrexate - it is the standard first line approach for RA too and some of us believe that when it works well for patients it may well be because they didn't have PMR after all but one or other sort of inflammatory arthritis (inflamed joints), rather than a vasculitis (inflamed blood vessels) which PMR and GCA are classed as.

And of course - I can't stop without mentioning myofascial pain syndrome which can mimic PMR neck/shoulder/back/hips and leg pain. It can lead to spasmed muscles which hurt and which can also irritate and pinch nerves sometimes leading to referred pain. There are various ways of approaching it, including steroid injections, but one thing that has helped a lot of people on the forum with problems that could well be MPS is Bowen therapy. If it is going to help you will know within 3 sessions - you don't have to keep trying in the hope it will work eventually. You don't need a doctor to request it and it is very gentle so won't cause any damage - though you might feel worse the next day as things are shaken up a bit and your body needs to get used to it. Lodger and I both swear by it and neither of us have ever suffered the next day - but often the therapist will warn you it might happen because of what they have done.

Thank you Eileen for your response, yes, my sister has zero negative RA, and it was along time to get a correct diagnosis for her......it is a minefield I know.  When I first went on 15mg, I felt marvellous, like a car with a new engine!......but I think the wrong fuel may be in now!!

I was doing the dead slow .5mg every six weeks when I hit the pain at 10mg....which the rheumy wanted me to be at for the next visit...and I was (3 weeks ago) but this is too low for me, and I`ve upped it again to 11mg....but still in pain, and may go to 12mg....and drop slowly and hope that this works....every flare seems worse than the last.  I have posted on here before, that the rheumy "threatened" to put me on MTX, but I quoted there isn`t much eveidence that it works is there!...I just got silence....which I don`t mind......

Anyway, having read several posts in he past, I have already booked the Bowen Therapy in a couple of weeks time...I`m lucky, the lady is only 3 roads away!...I`m going with a positive attitude that it`s going to help me.

At least the sun is still shining here, and hope it is in that wonderful place you live, it all helps in this awful club that we don`t want to be in!

......

 

Does your rheumy know that about your sister? 

It's all very well her having ideas about what dose you should be at - if the underlying autoimmune cause of the PMR symptoms is still active or has become MORE active (which it can well do) then whatever she may WANT is immaterial - you will need a bit more pred to manage the inflammation and, hence, the symptoms. They cannot assume that the activity of the cause will fall away from the date of diagnosis, nor that if it fades it will remain low. I had PMR for well over 5 years before diagnosis. It would improve a bit and then I'd have a bad period and then it would change again. And while you MAY be one of the people for whom it potentiates the action of the pred, the MTX isn't going to change the activity of the underlying disease process. 

Sunshine here yes - but also a bitterly chilly wind which is quite unusual. Lovely in the sun out of the wind and I've been sitting on the balcony reading - until the clouds came and spoiled the fun!

No, I haven`t mentioned my sister, do you think it`s a genetic link?

I am in future going to try and manage with just my doctor if I can, she did say to me at my last flare, that she could give me a steroid injection....I didn`t take up the offer because my sister has them, and they only last about 3 weeks...but on hindsight, I suppose they could help to get you through to the next higher dose of pred...before starting to slowly reduce again, if you understand what I mean....I also wonder about tolerance....does it follow we need more pred every flare to get rid of the pain (which is what has happened to my sister)....so an injection would make it harder for me....sorry to be so ignorant of this, but I sometimes feel I`m going round in circles, (with pain!)

At least you were able to have a quiet read, without your neighbour on the phone (yes, I remember!) Thanks again....

Hehe - she's just got back from being on holiday and had a friend round earlier. But they weren't shouting at each other!

There is a degree of genetic susceptibility to autoimmune disease but how close it is I don't really know.

It does seem that, for some people at least, if you get into a yoyo situation with pred dose it becomes increasingly difficult to reduce later. Whether that applies long term I don't know - in the sense if you remain at a dose for a long time and then try to reduce are you back to the beginning if you see what I mean. I got awfully stuck for a while but am now down to a low dose. But you can't really tell whether it is the disease process increasing or you being resistant. If only there were a way of measuring what the disease is doing...

Hey - why feel you are ignorant about all this? So were we all until it happened!

Thank you Eileen......

My  whole body feels like the muscles have all shrunk and become really tight causing all this pain...that`s the only way to explain it...I feel half frightened to move in case I tear a muscle or my back will go into a spasm....hopefully the Bowen lady will give me some help.

Hope the weather stays nice for you this weekend....we are doing really well here in the uk (well Norfolk is!) and the balcony is calm and quiet!

Constance - if you haven't already done so, do ask your doctor to arrange a synacthen test (adrenal function). It may be your adrneal set-up is being a bit unwilling - then at least you would know.

Thanks Eileen.  Every time I go to the Drs I mean to ask about the test.  I have an appointment next week and will write it down and put it in my purse.

What happens if the adrenals don't kick in?

You stay on a low dose of pred which acts as a replacement therapy - just like insulin in diabetes or thyroxine in hypothyroidism. 

Nefret on here is on 5mg for life for exactly that reason.

Eileen,

The need for maintenance low dosage of prednisone is this always related to problems with the adrenal function? If no, what other things might cause this need to stay on the drug?

It's difficult to say - if the adrenal function isn't good then a low dose of pred may be needed for that. But it also seems as if some people never really get rid of the autoimmune disorder and some of the PMR symptoms remain long term. 

I don't know whether they test people who really cannot get off pred for adrenal function - it has been acknowledged for many years that there are likely to be some people who need a low dose of pred for a very long time, even for life. I do know of one man who had been on a lowish dose of pred for 11 years before finally being able to stop. Some autoimmune disorders never go into remission - it depends on the person and the disorder.