I am feeling a bit sorry for myself at the moment- I regularly read posts from people who started on quite a high level of steroids and have managed to reduce to tiny doses within a relatively short time frame. I have been on pred for almost four years and have not yet successfully managed to reduce below 10mg without a significant number of awful symptoms coming back. I am 59. I am beginning to think there really will be no end in sight! Is that as bad as I assume it is, or are others having to take pred long term?
This site is a great help- thank you!
Wendy
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wendythom
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Only 4 years? That's a non-starter compared to my 15 and I will be on 5mg or thereabouts for life. Does it bother me? No, I only think about it when answering posts.
To be fair, I've a couple of other conditions which have required Pred, but the basic fact remains that Pred is my lifeline.
Have you noticed from other posts that 10mg is one of the sticking points for a lot of patients? Sometimes you have to be very sneaky about dodging past that level, and the DSNS (Dead Slow Nearly Stop) is often the way to go about it. You can find an article on that on this forum, on the right hand side, or one of us can give you the method.
But don't worry about it - that leads to stress which PMR loves and which will make it even harder to reduce. A fair number here have found that they can get to zero between 4 - 6 years and that is very much an average for patients on steroids.
I can't compete with polkadotcom - only about 6 and a half years of pred so far but 12 years of PMR. The first nearly 4 years I never got significantly below 10 - 9mg just worked but only just. Then I and a few others at about the same time worked out that many people struggled to reduce in the size steps the doctors were suggesting. A Swedish gentleman had worked out a slow way to get below 5mg which worked for him and had worked for others - but there were people struggling at higher doses too. And the DSNS regimen polkadotcom mentions was born. It is now being used in a clinical study in the UK and the rheumy using it recommends it to all her patients to try. It has allowed a lot of people to get below doses they had only dreamed of before.
But don't get too despondent - both I and polkadotcom are long term members of 3 different forums with different memberships but the people who shoot down from high to low in what feels like a couple of months often come a cropper later. One paper/textbook (lost the reference now) quotes that about a quarter of patients get off pred in under 2 years - but remain at a higher risk of relapse in the following years. About half of all patients require up to 4 - 6 years to stop pred and the rest need even longer.
Until about a month ago I was down to 5mg and felt well - then one day I struggled to walk up the slope to the village. The conclusion is it is a flare - why isn't clear yet - but I'm back at 15mg. After over 6 years. Am I bovvered?????? Not greatly - as long as I feel well and am not left unable to do anything - jam today I say.
I got down fast then it came back and bit me in the bum. Started pred August 2014 40mg daily down to 0 October/November 2015 December 2015 back on 10 mg tried to reduce mid January 2016 after 3weeks back to 10mg.GP has looked after me but she has contacted rumatolagist just waiting.
Wendy, don't lose heart. It took me 5 1/2 years on steroids to reach remission (6 1/2 if I count a year awaiting diagnosis!), and that was only after hitting a brick wall at 5mgs and a period yo-yoing up and down the doses between 10 and 3mg. Yes, some lucky people do recover more quickly and it can be demoralising when we can't do the same, but the bottom line is that each one of us is different in the way we respond to steroids and our levels of inflammation. As the others have said, like the 5mg dose, 10mg can be a sticking point for many, and if you haven't already tried following the slowly slowly approach recommended above, then do have a go at that, in just half mg decrements if necessary - that finally proved successful for me when tapering from the 5mg dose to remission. Stay positive - you, too, will get there.
Similar to the other responses, have been on Pred for almost 4 years, starting at 80mg now down to 1.5mg. Also took 18months to diagnose, so a long journey all told.
Obviously the doctors don't tell you at the beginning how long it's going to be, I don't think they really know themselves, and that long a timescale is a de-motivater anyway.
Fortunately I didn't seem to hit a block at 10mg or 5mg - but that was just luck, I have no magic trick to help you. But I do think that acceptance that it's going to take a long time helps. A week or so after diagnosis my ophthalmologist said - you will be on Pred for at least two years, probably longer, and maybe for life. So I fully accepted it was going to take time.
I also think it depends on how ill you were before diagnosis, if you're bed ridden, like some, or partially lost sight, like me, you are so thankful that something has stopped that pain, or saved the other eye that you don't think - I want to get off the Pred! That does come later I admit, but you just have to tell yourself if you're still on it, then you still need it! As we're always saying, PMR takes its own time, and there's nothing you can do about it. You have to go with the flow.
I have a theory that maybe GCA runs out of steam quicker than PMR, no proof, but reading lost of posts makes me think that PMR seems to hang around longer. Maybe it's because much larger doses of Pred are taken at the beginning. Don't know.
Yes, Wendy I so know what you mean! I have been on Pred. for over 3 years and only just now down to 9.5 on the DSNS method, 0.5 kgs at a time,having been up and down and flaring every time I went below 11mgs before. I felt very rushed by 3 different Rheumy's I saw who seemed to blame me for not getting lower. Now I know better and know that the PMR will do exactly what it wants to. All we can do is make some peace with it and accept it is what it is and it is NOT our fault!
Good morning wendythom ..I so agree with what polkadotcom and Suzy says..I have been bouncing backwards and forwards to 15mg of steroids for nearly 13 years. I have managed to get to 5mg a few times but always a flare-up or some other hurdle happens. When you say you are feeling sorry for yourself then there are a lot other sufferers out there feeling the same and that is what this Forum is all about. . Reading the posts of other sufferers has often put me back on the right road .Suzy is so right when she says that we are pushed to decrease the steroids fast .Luckily I have a good Rheumatologist but my GP has never been sympathetic to my pain or to my body not letting me decrease . I always feel better on 15mg steroid and cope better but I'm inclined to beat myself up because I know I can't stay there . I get cross with myself because others expect more of me that I know I can give ..PMR seems to thrive on stress and I try to get a quiet life as possible but it seems that everyone around me is in the fast lane. I am just coming out of a bad spell and hope to stay at 13.05 mg for a few days ..I long to be at 12mg when I see my Rheumy in late May but slowly slowly, I know I am trying to reduce and musn't give in. I have so envied the people on this Forum and at a Support Group that I belong to when they say they are on very tiny doses of steroid or in Remission ..I get angry because I can't meet my tasks that I set out to do in a day but then I tell myself to stop beating myself up because I Matter and when I pace myself my day gets better ..I have been through a very long tunnel and like you I wish for the end in sight ..All best Wishes. trish29
I know we all long for that light at the end of the tunnel but if we are at a dose that keeps us -relatively - pain free and reducing , however slowly, that has to be seen as positive. After 16 years on steroids I've never got lower than 4mg and have yoyod up and down after two GCA flares. I'm currently on 11.5 hoping
to rest on the bridge at 10 for a while and would be delighted to get down to 5 again and see what happens then. I have to pace my daily activities and some days get through much more than others, though this is as much due to OA as PMR/GCA.
Do what you can but don't fret about what you can't manage. No one likes to grumble but others have to know that there is a limit to what you can do and that it is not your fault. Be kind to yourself!
I have been on them for four years and the lowest I have gotten is 7. I have been told many people never get below that and that 50 % of us will never get off them. It is not a pretty picture but I just try to get my life to a manageable level and let it go. I can't honestly see the difference between seven and five even though the doctors are fixated on the lower. I am 79 , so maybe I am more open to giving myself a break. I think we all have our personal level and have to adjust to that. Remember stress is a factor ...so stressing over your level does not help. Hope you find some solace in having lots of company.
Hello 30048 ..after browsing through some posts I have just found yours and I'm wondering about steroid Reduction and the fact you have commented on 50% of PMR/GCA sufferers never getting off of steroids ..I've had nearly 13years of taking prednisolone, the lowest I've ever been is 5mg but that was a long time ago !! I've never been told that high amount struggle to reduce. I have been told by previous consultants/Rheumatologists that I could be on 5mg for life, at the moment I am on 13mg steroid allowing myself an extra 1mg if I'm going through a bad time. I have longed for a light at the end of very long tunnel. Like you say the medical expect you to go lower but My Body just does not allow . Since my last Flare I try to listen to my Body more and I have been having Bowen Therapy to help me relax and get through my pain better. A good day is Special and Quality of life at 69 years old is a necessity.. All best wishes. trish 29
Thank you all for your helpful and supportive replies. It is disappointing that the medics are so keen to get people off steroids when it is pretty clear they are very much needed. It sounds strange to say I am pleased to hear others have trouble reducing but you know what I mean! It is so comforting to know one is not alone. I agree that stress is a key factor and unfortunately I have a massive amount of that in my life.
Let's hope some spring sunshine will make us all feel better and positive! Thank you all X
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Mixing MTX and Steroids 
Pressure to Reduce steroids
Please help me to understand?
I am so thankful for these posts re PMR.
