My Doctor called me this afternoon to tell me that he is going to refer me to a specialist for my polymyalgia as I have now had this condition for 3 years and I have just had a second scan and have still got osteoporosis, apparently most people get off pred within three years. I am feeling quite deflated . I am currently on 5mg a day split into two doses my start dose three years ago was 10mg daily, I seem to be stuck on 5 if I go lower I get pain, I have a little bit of neck pain on the 5 mg
Please tell me that I am not the only one finding it difficult to go lower with pred
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Sandidee
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No you aren't! I'm nearly 6 years in and I hope I have just successfully reduce to 9.5 mg pred daily. Experts will be along shortly but "most people get off pred within 3 years" - I think not. I have tried SO many times to reduce and it took me 2 months to reduce from 10 mg to 9.5mg but I think I am there now at last. A lot of people on this site including me would be thrilled to be on 5mg after 3 years. I am lucky enough to have a GP who is happy for me to manage my own condition and I put quality of life above worrying about pred dose. Can't comment on the osteoporosis but presume you are on calcium supplements and maybe alendronic acid? Just wanted to offer my sympathy and support. Experts will be along shortly😊
Thank you so much that has made me feel a little better I have some pain on 5 mg but it is bearable I have no pain on 6 . I think my doctor is more worried/annoyed that there is no improvement on my osteoporosis it is the same now as it was three years ago I take risedronate and some tablets for it. You are lucky with your doctor I wish mine would just let me get on with sorting myself out.
Hello. Oh my, poor you that’s a lot of fractures ! I see the specialist at the end of March it will be interesting to see if he wants to try something els on me.
I’m sure there are many of us who have been taking Prednisilone for much longer than 3 years Sandi .
Your GP is probably concerned about your Osteoporosis and steroids and wants expert advice.
My rheumatologist advised me I’d probably always be on 5mg as a maintenance dose .
I took this quite literally and didn’t even try to reduce any lower than 5mg for a couple of years.
I did get to 3mg last year, but was constantly tired . I think you could even see an orthopaedic Consultant re: osteoporosis . Rheumatologists are hit and miss from what I’ve read . The experts on here will help you and advise. Take care
Hello.I have had two appointments come today one appointment is with Rheumatology and the other is with rheumatology osteoporosis so it will be interesting to see what they have to say. I wish you lots of luck in your journey with pmr
I wonder how he defines "most people". There is evidence that half of patients need up to just under 6 years to get off pred. Which means half need longer. One in 5 patients can get off pred in a year, by 2 years a third get off pred, but many patients still require low doses of pred at 10 years. I know that many experts are not worried by patients being on low doses for extended periods of time and one, Prof Dasgupta at Southend UK, told us last summer he often keeps patients on 2-3mg indefinitely as it reduces the incidence of relapses.
are two articles about the same study (the link to the original paper is at the end of each) done by experts at the Rochester Mayo Institute but with slightly different emphases.
As for the osteoporosis - he should learn how bisphosphonates work: they do not encourage new bone formation, they slow the rate at which bone is broken down and prevent a situation getting worse, maintaining the current level but do not necessarily improve your bone density. If he wants to see increasing bone density then either denosumab or Forteo would be more suitable options - but they too have their own problems and Forteo is only used for really severe cases.
Do you happen to know what your dexascan results are? The t-scores are the important figures.
As piglette says, it is a fairly normal procedure for GPs to refer if they decide a patient isn't responding the way they expect - unless they are really experienced and know that every patient is different and a lot of patients need pred for a lot longer than 2 to3 years.
Hello. Thank you so much for answering me, this group has really helped me and it is lovely to know that I am not alone. No I have no idea what my t-scores are as I never received a copy of the results that was sent to my doctor I asked the hospital to send me a copy but it never happened. I see the Rheumatologist at the end of March so I’ll ask him actually I might give the surgery a call and see if they can tell me over the phone
He is wrong. I have been on steroids for 4 years now and on 4mg of pred. I do hope your doctor has prescribed d3 and calcium. My doctor is quite happy with my dose and leaves me to do as I need to
Hello. Yes I have risedronate once a week and Adcal-D3 caplets one twice daily so my doctor thought that my osteoporosis would be a lot better now then it was three years ago. My doctor is lovely but he he is worried about my bones
Then he's probably using the wrong medication - bisphosphonates rarely INCREASE bone density, they just prevent it getting worse. If he wants to increase bone density then he should be looking at denosumab/Prolia or Forteo.
I have had PMR for nearly 3 years. I started on 15mg Pred daily and am now down to 5mg. I have tried to reduce slowly from that but without success! I always have to return to 5mg. in order to remain fairly comfortable. This does not worry me though. A Dexa scan 14 months ago also showed that I have osteoporosis. I do take the calcium tablets but not as many as I should as they play havoc with my insides.
Have you tried cutting the tablets in half ? I think when I do reduce from 5mg (that won’t be yet ) I am going to cut a tablet in half and try 4 1/2 mg and if okay I will stay on that dose for a while before I try to go down to 5. I wish you lots of luck
Thanks, Sandidee! Yes, I was on 4 1/2 mg for quite a while a few months ago and then I always cut the 5mg tablet in half. I will give it another go in a month or so and see how I fare but, if I have to stay on 5mg for longer, then so be it. You have to be comfortable!
Hi Sandidee. I don’t agree with your doctor’s 3 year theory. I have been on Pred for 4.5 years now - diagnosed with PMR in 2016 aged 53. Started on 20 mg and finally got down to 4 mg before Christmas. Felt increasingly ill and had a horrible, scary flare so have recently had to go to 20 mg for 2 weeks to quell it, as advised by my rheumatologist, Rod Hughes. I am now reducing every 2 weeks - 20 mg to 15 mg to 10 mg to 7.5 mg then to 5 mg where I have to stay for a good long while according to Dr Hughes. I am happy for you that you are being referred to a rheumatologist. 😊
Hello Susie. I had an awful flaire back in November I was down to 3mg but I got to the stage where I couldn’t lift my legs when I was getting dressed I was in to much pain so I went up to 10 mg and now can’t get below 5mg. I see the rheumatologist at the end of March
Hi Sandidee. I know what my brilliant rheumatologist would say - stay on 5 mg for longer - any less may not be enough for you at the moment. He said to me that the side-effects are small at this dose. The average time to get to remission with PMR is 5.9 years. Hang in there. ❤️
Don't worry your defiantly not on your own.!.this is my second time around on pred, and I'm stuck at 5, decided to get down to 4 before Christmas.I rushed it and felt dreadful! Due to the excellent advice on here, I'm now comfortable on 5 for the moment.I have been on it for 8 weeks.Will go down a half each time, but at a slower pace !I've learnt not to rush it . Good Luck!😊
I've had pmr for 9 years this November and can't get below 7mg pred. It doesn't help that I've not seen a rheumatologist for 2 years now due to clnics being cancelled. I've learnt to just go with the flow now and not worry too much. X
Hi - I have had PMR for over 8 years and still on 10mg Pred. I have never got below 7 without starting a major flare. I haven't seen a rheumy in years, partly my fault because I refused the methotrexate route and that was all that was on offer. Like you, I just try to keep going. Some doctors seem mortified about steroids used long term but I take the view that I want to feel as ok as I can today. None of us know what's around the corner so what is the point of suffering by taking drugs with awful side effects, or ones that don't work, and making you feel so ill in the here and now? PMR responds well to Pred, no question. If it ain't broke, don't fix it! This is just my personal view, how I see it!
I am five years on 5mg. I worry a bit that you are in discomfort on 5mg but ok on 6mg. I would be sticking at 6mg for a while, as things will probably only get worse if you try to fight it out on 5mg.
Hi, thanks to this fabulous group of people I no longer worry about what we were told by the doctor. They seem to know so much here they are my bible.I hoped to be off pred and well by two years, I have had it for six years now and still get flares and have to up my dosage short term. I am down to four mg but can’t seem to get lower for long before I get another flare. Due to the information from all the knowledgeable people on this site I know that’s ok and just carry on as I am , hoping one day it will go away.
I am I n the same boat. I cannot get below 10mg or flare. They have tried Methotrexate, Enbrel, and now Orencia with no avail. I am three years in. Started Fosamax infusion for osteoporosis concerns. If anything works, I will let you know. In a current flare again so I did just order a quality massage chair that I can control the intensity in hopes can helo some of the morning stiffness and pain. We will see. I usually get some short term relieve with a gentle massage. Best wishes to you!
If you have PMR then neither Enbrel nor Orencia are likely to achieve much - they don't target the major cause of inflammation in PMR, the production of the cytokine IL-6. The 2015 Recommendations for the management of PMR specifically warn against the use of anti-TNF drugs, If they can use a biologic - why haven't they tried Actemra/tocilizumab?
I typed once but do not see reply. My doctor ordered Actema but insurance denied until try these two first. Long term is the intent for Actema. She thinks because is being used for COVID-19 lung inflammation. Biding my time.
Someone needs to explain to the insurance that this isn't RA, it is GCA/PMR which is a totally different disease. Mind you, they are none if them approved for PMR so that may have something to do with it.
It sounds like you need a dose slightly above 5 mg. We don't all metabolise pred at the same rate or with the same efficiency, some people actually benefiting from as little as half their actual dose, others getting much more complete benefit. Also other things can be going on in our lives which raise stress and mean a slightly higher dose is required. For example, work, care-giving, that sort of thing.
To add to the others' stories, I too have been on pred far longer than three years. And despite an initial mostly uneventful taper from 15 to 1.5 in the first two years, I've spent more than three years at or about 2 mg (one brief flirtation with zero about a year ago) and recently have had to increase as high as 10 to manage a flare. Where I live, no talk of seeing a specialist, unless it was to "manage" bone thinning, not PMR itself.
I am in my 3rd year and am down to 5 mg. prednisone daily and leflunomide. My hematologist and rheumatologist have both told me I am at 5 mg. for life. Now I do have MGUS and there has been a recent spike, plus my hemoglobin dropped to 7 with anemia so I had 2 injectafer infusions [iron]. So my issues are different than others. But what I want to say is face each day chin up and recognize this is a "journey" as my doctors like to say. There are no quick fixes. I've always been a glass half-full, so that's helped me. Recognize that life probably will never return to pre PMR days, but what the heck--there ARE days ahead. Sometimes in the early hours I get a bit "down" [my cortisol levels are nil] but then I make a conscious effort to climb back up again, and it works. Good luck. Don't let this PMR rule you. YOU rule the PMR, discomfort, dr. appts., medications and all............
I have REALLY struggled to get down! Now on my 3rd year fortunately I have an amazing GP who tells me that whilst they are told to get everyone off within 2 years it very rarely happens. I and doing a very slow taper which is working for me. Not as fast as I’d like but I’m encouraged that it works better. I was also referred to my Rheumatologist immediately and have shared care - brilliant support- and speak to my GP at his insistence every month just to check in. So I think there are many in the same boat as you. Stay positive and just go with what works for your body.
I started pred in 2012 for PMR. Did once get down to 6mg but it was too fast and I paid the price. Now at 6 more successfully and crawling to 5 1/2. Every now and then a different Go may say 'get to ?? by ??' but thanks to this forum I quietly ignore them and wait for a GP who knows the condition. I have been lucky, have had 2 GP's who know. Quality of life is all in my book.
Hi sorry to hear of your struggles. I have been on prednisone for nearly 5 years now, when first diagnosed my GP said I’d be on them for around 18 months ha ha !! Little did I know!! But luckily I found this site and realised that was never gonna happen. XI started on 20 mg and am now down to 2.5 mg. it has not been plain sailing, a few flare ups but since following the DSNS things are much better if slower. I had a dexa scan 3 years ago and was showing osteoporosis in lower spine so have been on AA but have decided that now I am not taking it .
I have brought a weighted jacket and am increasing my exercise regimen and attempting to change my diet to help them bones 🦴 I think you have to remember that you need the dose that you need to keep it under control, that’s what PMRpro mantra is and I repeat it when things go belly up. 🤪
I wish you luck but remember you are not alone in this which I think helps xx
Thank you that has made me feel much better to know that I am not alone. I have not seen a copy of my scan although I asked the hospital to send me a copy, my doctor phoned and said that I still had osteoporosis I see the specialist at the end of March. It is lovely to hear that you are on a low dose of pred and wish you lots of luck
I’ve been on pred for 3 years as well, and have flared 4 times every time I attempt to lower my dose below 9mg (starting dose was 20). My last attempt was to lower by .5mg drops from 10 last June, to 8.5 this month so I tapered really slowly.
Sure enough once I got to 5 doses of 8.5mg followed by one dose of 9mg, my CRP level rose and symptoms started returning. Unlike other flares I didn’t “dig in” and try to stay on the same taper or lower further (which just resulted in higher inflammation and more pain/stiffness which eventually required higher doses of pred to combat it).
Instead I did a one week pred burst and have settled in at 9mg so it is where I’ll stay likely for months. I’m tired of yo-yoing and you are correct, it can be disheartening for sure. My GP would’ve thrilled if I could get to 5mg, but my body is saying “9 IS FINE” (my new motto).
Your doctor is misinformed about the course of PMR for most folks. A specialist is fine, as long as you are not pressured to lower your dose further (especially if you are already having neck pain at that dose). They may suggest other medications to help you lower your pred dose, but again those are choices you have to make. Advocate for your health and listen to your body!
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I feel so ill and confused
So sorry - me again!
