For the last 3 weeks or so, I have been getting worse and realising that I cannot even go down 1mg on the very slow reduction plan- hoping I can go down by 0.5 and will start that as soon as I feel well again . I have now gone up from 11mgs to 12 and am starting to feel better, but in my lowest moments I wonder if I am the only one (apart from PMRpro possibly ?) who has had PMR for 3.5 years and been on Pred. for 3 years and have still not managed to get below 11mgs without flaring. I see lots of people who are struggling at 5mgs but I have a very long way to go to get that problem. I am finding the drops harder than ever , am feeling worse that ever and am more disabled than ever. Is it that the PMR is raging more in me than in others, or that the PMR is variable( I got down to 9mgs Xmas 2013 and felt very well) and bad at the moment? It is hard to stay hopeful at the moment, and I would really appreciate hearing from anyone who is in my position or has been in my position, so that I don't feel like the odd one out who is going to be on high doses of Pred. for ever!
Difficult weekend, feeling alone.: For the last... - PMRGCAuk
Difficult weekend, feeling alone.
Suzy1959,
I can certainly understand your frustration. I have not had your experience, but I have read of others in this group who have been on the Prednisone for 5+ years for their PMR. It seems to be so variable with each individual person.
I am dealing with recently diagnosed PMR/GCA so am presently taking Prednisone 50mg and Methotrexate.
I hope you receive some helpful suggestions from this wonderful group.
You are in my thoughts today. May you know you are not alone.
Hi Suzy1959,
I can certainly empathise with you. I have not been on steroids as long as you, for me about 18 months, but have yo yo'd up and down. I have been trying to get down from 20mg and currently between 19 and 18mg on the slow reduction plan. I am really suffering and am also at a low point. What do I need to do to see some relief!!!! I'm the same as you I believe in that it's comforting to know it's not just me who is struggling to come down on the preds . I just don't to be able to see the end and worst is that I am still in quite a bit of pain on what I think are fairly high doses of steroids. The fatigue and tiredness are bad enough but not being able to exercise, it hurts too much afterwards, is really like a double whammy. I need a good dose of PMA (positive mental attitude) which feels wrong as so many people have far worse to put up with. Any way I hope you make progress soon.
Suzy, I had PMR for 6-7 years, GCA for 5.5 years and was on steroids for 5.5 years. So, miserable as it is, do hang in there because there is life after steroids.
At least it must be a relief to start feeling better now that you have made a small increase back to 12. Certainly try the smaller 0.5mg drop in future and tapering by the slow method - it may just help you. If you have reached 9mg in the past, then it proves that you can do so again.
Are you under the care of a good rheumy in whom you have confidence? Is your worse pain in a particular area that could perhaps be helped by a cortisone shot if you haven't already had one.
I'm sure you will get lots of replies from which you will see that you are certainly not "the odd one out". Have you checked to see if there is a support group near you - that can certainly help you not to feel so alone during these bad days?
Hi Suzy1959
I have had PMR for almost 4years with diagnosis for 3 n half years.
I started at 15mg but could never get below 11mg this continued until I had a Major Flare & Consultant put me on a week of 30mg followed by a week of 20mg then back to 15mg
This happened three times & long story short weight went up by over 3stone, BP Shot Up & I could barely walk I was so out of breath.
My GP referred me to another Rheumatologist who added Methotrexate, reluctant as I was & all I read about it, l really didn't have a choice! . . .
I struggled a bit with nausea at first but found away around it by taking it at different times of the day & they also offered me injectable MXT which l declined but I got down from 18mg to 7mg without any real problem.
I lost two of the three gained stones & can walk much further. However, 7mg has been my new sticking point & I have been down as low as 6mg but ended up back at 7.5mg to damp the symptoms down again.
We were trying 7mg/6.5mg alternate days then stretching it out to 7mg/6.5mg/6.5mg repeat & was doing really well! . . . . .
I've currently had to have Surgery & the Team were amazing, covered me with IV Hydrocortisone in Theatre & Recovery & put my Prednisolone up
to 10mg for two weeks Post Op, I currently feel a bit 'high' & honestly think its a bit too much!
But not withstanding my current issue, a new Rheumatologist view point & the MXT got me from 20mg to 7mg & I became Me again.
I know the feeling of loneliness & wondering if I'd ever get over it but I think you need to be on a dose where you feel OK (PMR PRO will advise you re this I'm sure) then revisit the reducing even if it is by 0.5mg
My Consultant was impressed I went from 10mg to 7mg in 1mg drops but only wants it in 0.5mg from now on
I hope you feel better soon & find the lowest dose to keep you symptom free
Very Best Wishes xx
Hi Suzy.. So sorry you are still having problems but Please Do Not feel alone, We have this horrible condition in much the same way and we also share the same Rheumatologist .. If anyone can get us through he can .I got down to 13/ 12.05mg and was doing quite well although my pain was awful and then out of the blue yet another flare and my Rheumy suggested t go back up to what I was comfortable with and I had to go up to 17mg now trying 16.05 ..I believe you had a Depomedrone injection a week before me ..it hasn't helped my pain but did make me a bit brighter in myself . Family and friends despair of me and I have had this rollet-coaster ride for 11 years. What a shame you don't live near Chertsey as today we have a WONDERFUL meeting and when you come away from thiese meetings you know you are not alone and our lovely Rheumatologist has given talks at our meetings chaired by our lovely Celtic .. Most days I feel in adequate because I cannot do what I would like to do around the home ..I haven't tried The Bowen Therapy yet but that is next on my list .. At the moment I am going very slowly on my reduction as I have a 19 year old Grandson who needs our love and Support who has just been diagnosed with an auto- immune condition called Cerebellar Ataxia and had his 19th Birthday in Hospital ..he struggles to walk and co-ordinate ..I'm trying to be positive on his recovery as so as not to give myself another flare-up. .We know with this horrible condition that we have to have a lot of rest and that is the only thing that works for me ..it causes Aggro but I make myself take that rest ..I will watch your posts with interest Suzy and you are with the Best Rheumatology team ..Best wishes and seeing Virtual Hugs as we all need them. trish29
Hi Suzy,
I do sympathise. I'm now in my fifteenth year of taking Prednisolone, initially for PMR and later GCA, and have never got below 4.5mg. I've had several flares during this period and am currently reducing from 30mg prescribed after a GCA flare in June 2014 and have reached 12.5 ,dropping 0.5 per month . Realistically, I do not expect to get off pred completely as I'm now 75 and I understand that the natural cortisol production may not kick in at my age even when -when ever that is- I get down to 5mg. It is a horrible feeling that one is trapped on a treadmill but do remember you are not alone; I know at least one other person who has been on Pred as long as I have.
What worries me most is that with the current GP crisis I can't even get to talk to a GP on the phone about side effects - currently increasing incidence of haematoma. A phlebotomist has recommended I get a test for blood clotting but without speaking to a GP I can't get this. This site is my lifeline and it helps to remember we're all there for each other. I do hope you can get over your present sticking point.
Good luck!
Maria, I have taken to writing to my GP. I don't know if that will work for you? I feel at least they have my side of it and they can then more easily contact me with the answer.
Thanks, piglette. I have tried this in the past to no effect but |I now have a new GP so perhaps worth writing again.
You are not alone Suzy, I have PMR for 6 years now and I'm still at 10mgs. I went back 2 months ago to see my rheumatologist and she asked me to try to reduce to 7mgs. I have tried but pain gets so bad once I go below 8-9mgs that I cant work with it. As I was diagnosed at 46 my rheumy still doubts its PMR I have even though I had a PET scan which more or less confirmed it due to the inflammation in my hips and shoulders etc. I'm due back to see her on the 25th and dreading what she will say. So no you are NOT alone there are plenty of us that have a lot of trouble and pain reducing. Sending you gentle ((hugs)) xx
Hi Suzy, I haven been on steroids for 9 years. Initially for PMR and later GCA. It was such a struggle to get a diagnosis as I was only 50 at the time, the symptoms started about one year earlier. I have had several flare ups, at the worst time taking 60mg, tried all the steroid sparing agents but my body couldn't tolerate them. So currently on slow reduction again after an earlier flare up this year. I am now on 11mg, I have never been able to get lower than 11mg before but thanks to the wonderful information on this site I am ever hopeful. It is very easy to give up as I too have struggled at times but they do pass. I sincerely hope things get easier for you, you are not alone.
A few months ago I was at my GP and we were chatting about PMR and how long it lasts. She got out her German rheumatology textbook - where it says, quite clearly, that the average length of treatment required for PMR is 5 years and that some patients require treatment for much longer.
It infuriates me that in the UK doctors persist with the story that it is gone in a couple of years. No other country where PMR is prevalent seems to push this idea. The literature from other countries is clear, PMR can last some considerable time. My GP is very relaxed about the dose - yes, OK I am now on 5mg but as far as she is concerned that is fine and is often concerned that I'm on enough - "You need what you need". I'd tried 3mg but I did feel so much better on 5mg.
I really do believe that the worst thing to do when reducing is to force a reduction and "put up with" extra discomfort for the sake of a lower dose and that many doctors are the cause of their patient being on higher dose pred for longer than they might have needed.
Here in German-speaking Italy we also don't get handed vast quantities of other medications as "protection" against side effects, they are dealt with as they arise. Often they never do! In Germany there are doctors who use methotrexate alongside pred routinely - but they also go about things more aggressively at the outset. The anecdotal evidence from the forums is that for a lot of us the very slow reduction does help get to single figures - but also that being just into double figures after 3 years is not unusual. And it does appear that there are parts of what is assumed to be due to PMR that aren't and which respond much better to being considered separately and treated individually. PMR makes us walk badly, pred doesn't encourage good muscle tone - and that can lead to a lot of pain and discomfort. It needs an holistic approach - and that is something that does seem to be sadly lacking in the UK, sad to say.
I'm wondering if the German textbook indicates a time period for GCA or if there is anecdotal evidence regarding duration.
I just read the section on PMR and can't have a look as I'm in the UK this week. I know people who have got through GCA and off pred in just under 2 years - and some who are still on pred after several years. It.s just the same - some people take longer than others and there is no real way of predicting which you will be in advance. It's a lesson in patience...
I have been on prednisone for over 5 years and can share your concern as I have not got below 10mg yet. I am on a steroid sparing drug for another complaint so am trying to get down as much as I can but what happens if I stop the other drug I don't know. Hang on in there
Thank you, all of you ,for your wonderful replies. It is really heartening to know you are all out there and that we are a community!
It really does seem to be a question of getting my head in the right place. i.e. accepting that I need the Pred. - as much and as long as the pain tells me and I need to get rid of the inner critic ( fuelled by 3 of the 4 Rheumys I have seen) that tells me I am doing it all wrong!
Incidentally, PMRpro, I think it is a really good question: WHY do the medical profession get it so wrong with us and undermine our progress by not giving us the facts ? I would love some research around this area, because I agree with you- if I hadn't been getting this message of " Hurry Up"all the time, I wouldn't have had all the flares that I have had and overall would have been on fewer steroids up till now. How can we get this message across ? I would be very happy to be involved in any work in this area.
I send my love and appreciation to all of you who are , like me, suffering with this horrible THING. x
Doctors never do well with chronic illness that they can't cure. They are programmed to be the great healer and when they can't say to a patient "I will do this and thins and then you'll be fine" they seem to think they have failed in some way. Doctors who go in to palliative care are very different.
They are also terrified of pred - they are absolutely convinced it is a terrible drug and anything else will be better, including none. But as we all know - that is patently not true!
However - there is to be a study including the dead slow and nearly stop reduction. Maybe we will have been involved in getting the message across. I do do my best 
My sympathies. PMR is so individual. I have been on the journey for 3 1/2 years. 15mg Pred was my highest dose and I remember the disappointment each time I had to return to that dose.
10 months ago diagnosed with severe hip osteoarthritis. I had noticed more pain on right side than left. First hip replaced May and second 4 days ago! Also managed to reduce Pred to 2.5 mg per day. Pain free at moment........but loads of drugs!
Wishing you well. Valerie
Wow! See this has jumped to 3 years ago.....technology's!!
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