Never being able to reduce the pred??
Posted , 7 users are following.
I have been lowering (second time round!) the pred, and have on my rheumys instructions, got to 10mg....I am in lots of pain, so have upped the dose to 11mg the last two days....it`s easing abit, but my question is and it may sound silly.... is there a point where you always get stuck at a certain dose and can never lower?? This worries me, because of the threats of what steroids can do to me (Rheumy) but there`s just no point in lowering if I`m housebound with pain! I previously got to 7mg, and had major flare, this has been going on for 3 years now. I know tolerance comes into play, but any suggestions welcome, thank you!
0 likes, 26 replies
EileenH linda17563
Posted
Follow this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
and then scroll down past that first post to the replies section. The first 2 or 3 posts are about a reduction scheme: "Dead slow and nearly stop".
It is being looked at by one of the PMR research groups - it has worked well for a lot of people so it is well worth a try. The pain is not always the PMR - sometimes it is your body having to get used to being without its usual dose of pred.
Some people have awful side effects after a few months of pred, others take pred for years without any trouble. I've been on it for over 6 years and haven't crumbled yet. I put on a lot of weight - but with application have lost it all again. And using the dead slow approach I'm now at 4mg having never managed below 9mg before.
linda17563 EileenH
Posted
linda17563 EileenH
Posted
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....
EileenH linda17563
Posted
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.
linda17563 EileenH
Posted
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!
......
EileenH linda17563
Posted
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!
linda17563 EileenH
Posted
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....
EileenH linda17563
Posted
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!
linda17563 EileenH
Posted
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!
sue-dorset linda17563
Posted
I think for some people, the answer might be yes! However, there are things that you can do which might help. Firstly, as you say go back to a level where you feel okay, stay on that for a few weeks, then try reducing using one of the slow methods (if you aren't already), and I found once I got below 10mg it was was better to reduce by 0.5mg each time. Some people are a lot more sensitive than others to the reductions.
You also need to remember that, around this level your own body should be starting to kick back in with its own cortisol production, in some people that takes longer to happen. Your body hasn't had to do that for the last 3 years whilst on Pred, so it may be a bit reluctant to do so. That why the slowly, slowly, tiny reductions are better.
If you try both these suggestions, and things still don't get any better then you can request a test to check whether your adrenal glands are actually working.
But give it time, I know it's frustrating, but I'm afraid PMR/GCA won't be rushed, despite what the doctors think, or the patients want.
constance.de linda17563
Posted
I started on 40mg of Pred, but ESR and CPR kept rising and I was put on 60m, then I was hospitalized (I had Sepsis). I'm telling you all this because we are all so different, but the pain and discomfort are terrible at first. However, things do improve - for some it takes months, for others, unfortunately, years.
I was eventually able to get down to 6mg (a few flares between). I then tried to get down to 5mg but got stuck. I've tried several times to get below 5mg, but so far haven't made it. Quite a few seem to get stuck on 5mg, I don't know why. Have patience, we'll get there.
We all worry about the steroids, but we have no choice. Learning to accept this is one of the most difficult things.
Kindest regards from Constance.
EileenH constance.de
Posted
constance.de EileenH
Posted
What happens if the adrenals don't kick in?
EileenH constance.de
Posted
Nefret on here is on 5mg for life for exactly that reason.
karren61208 EileenH
Posted
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?
EileenH karren61208
Posted
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.