I have today been started back on Pred but at a higher dose of 30mg in the hope that it will control the severe pain and stiffness I’m suffering from following my diagnosis of PMR in May. Very nervous following the last time I took it at 20mg and had such bad side effects and no relief of pain so GP took me off it. I’ve seen people talk about a slow taper method to come off steroids... I know it’s v early days but I would like to read more about it so I understand how long I need to stay at 30mg and when I can start to v slowly reduce it and how I do it. I know it can take years to come off and people on here talk about how important it is to do it slowly so as not to relapse, which is what I want to do. So at least I have hopefully something positive to concentrate on and a plan to put in place. Thank you to anyone who reads this and takes the time to answer.
What is the slow taper method to reduce prednisol... - PMRGCAuk
What is the slow taper method to reduce prednisolone?
Hi,
If you have a look at this post - it has links to a couple of different tapers - which may help -
healthunlocked.com/pmrgcauk...
Also have a look at this -
healthunlocked.com/pmrgcauk...
If you have any specific side effects come back and ask - there will be someone who can help.
Thank you so much, that gives me so much information so I’m really grateful.
You need to stay at the dose you are at until you feel the symptoms are a lot better. If your blood tests are raised they can be helpful too - they should be falling steadily and getting to normal levels. At these sort of doses you should be able to reduce 2.5mg at a time, but no more, down to 20mg. Each time you reduce you need to be sure you don't feel any worse at the end of the reduction than you did at the beginning before you start on the next step.
What were the bad side effects last time? Maybe some of us can make suggestions that will help you cope better with them if they appear again.
The Dead Slow and Nearly Stop taper is one I developed - if you have any questions about it at all, just ask and I'll try to explain it better.
Thank you so much. That all sounds very sensible and a very good plan. When I was first diagnosed at the end of May this year, the GP put me on 20mg Pred. After nearly two weeks I had had no relief from pain/stiffness etc but instead had had horrible side effects: thumping heart 24/7, full on insomnia, anxiety, crying all the time and basically thinking I was going out of my mind (I’ve never ever suffered from anything like that before), it was absolutely unbearable so GP stopped the Pred. Symptoms and pain (and inflammation markers) have all deteriorated massively over last month to the point where I can hardly walk, can’t turn over in bed etc etc. So I’ve reached the tipping point where had to do something, so it’s back on the Pred at a higher dose to see if it will finally control the pain.... but am dreading the side effects again. This type GP has also prescribed Amytryptyline to take at night (which someone else on the forum had recommended), so fingers crossed that works. I’m a single mum with two girls aged 12 and 14, and I need to get my life back!
You have a life but it may not be the same life you are used to. We often tell people you have a new normal for a while. PMR will set up camp and stay for a while. Hopefully this time you get some relief with the pred. PMR itself can make you feel anxiety and foggy in your mind. I also had insomnia. So eat right, rest right and get your children to get you a cup of tea or a meal occasionally. You all have to accept you may not be able to run around for a while, but it's not forever. The more you can get a bit of rest the better you will feel. 🌻
Thank you so much for your wise snd kind words.
At 12 and 14 they are well able to pitch in. I had a single mum friend years ago who taught her boys to do their own washing at the age of 7! In the US, no automatic! They won't learn younger as my mum used to say.
As Poopadoop says, it shouldn't be forever - but life with pred should be a lot easier than PMR without it! I know - I had 5 years of it. It wasn't nice.
I feel the need to add to other comments ,: that it is often said that one who does not respond well to Pred in about 2 weeks or less should have the doctor looking for alternative diagnoses; that is something other than PMR. I felt like a million bucks in less than 48 hours. It doesn't last as you taper, but how is your thyroid, possibility of any viral or bacterial infections?
You may want to have your doctor look for other possibilities; maybe not PMR? All other comments being valid, but maybe you have something else. Minds of doctors do need to be kept open and there so many other potentials.
PMR is a diagnosis of exclusion; has everything else been ruled out for sure? It's a tall order to exclude every illness that exists, but it 's a subject I would raise with your doctor.
I don't know what tests you have undergone, scans, the degree to which you have been examined, but it does raise a red flag when a diagnosis of PMR has been given without response to Prednisone in months.
Being a single Mom with 2 girls ,12 and 14, is a challenge for the most healthy woman so maybe you and your physician need to think in another direction. I wish I could be so sure that Prednisone is THE answer. There may be something else going on.
Do you have friends, neighbors, family to help you out to make life a little easier while you try adjustment of the Pred, and ask to be evaluated for other possible diagnoses. All the symptoms you discuss, are PMR sounding and you may need more Prednisone, but something is not right here. It's not unusual for Pred to cause the side effects you mention.
If you can get your hands on it. "Coping with Prednisone (and other cortisone related medicines) by Eugenia Zuckerman and Julie R. Ingelfinger, MD , sisters, one a professional musician, and her sister, a medical doctor. It is about a different autoimmune disease, but one requiring large doses of Prednisone. Comment attached,: It May Work Miracles But How Do You Handle The Side Effects?
In your situation stopping the Pred. was not the answer either; so sorry for your suffering. Hugs.🌹🌹🌹
Just so you know, you're not the only one!
I was started at 20 mg nearly five years ago, but, after six days at 20mg, my GP put me up to 30 mg, as the pain was not under control. I stayed on 30 mg for 23 days, and only then began to taper. I'm now at 1.5 mg daily.
In my view the advice you have been given for tapering is excellent. Whatever you do, don't try to rush it, and make sure you get plenty of rest and tlc, otherwise the PMR is likely to bite back.
Fortunately, I didn't suffer the devastating side effects you describe.
I wish you good luck. This forum has been brilliant for me, and, if you follow it regularly, you will get loads of information about PMR. Always ask if you have more problems; there will be someone to help.
Best wishes
Paddy
Thank you so much for your comments and interesting to hear you also didn’t get relief at 20mg. Am hoping 30mg will do the trick.
Yes, I hope so too. Try to be patient if you can - it took me over three weeks to feel well enough to risk tapering!
We'll all be rooting for you.
Paddy
Thank you, much appreciated and nice to feel I’m not alone.
I do feel for you. I'm mum to a teenager and a 10 year old....so I completely hear where you are coming from. I was diagnosed in July of this year and had to stay on my initial dose for a whole three months before being able to reduce...(amongst two failed attempts...which saw the dose raised higher than starting dose)....and even then...I have only managed a reduction of 1mg
I'm sorry to hear your experience of prednisolone and its side effects. It can be a roller coaster emotionally. But to constantly feel low must have been a huge upset.
The tapering plan links DorsetLady has provided are great. I used them to reduce my dose by 1mg and I have just dropped it again by 0.5 this weekend. Stick with it. It is not a race. Be in tune with how you feel...and dont drop if you have any discomfort. You WILL get through this....you might just be taking a slightly longer route.
Thank you, sounds like we are in similar positions. Gosh, that’s a long time to stay on your initial dose (and then higher), do you mind me asking what dose that was? I wish you lots of luck with your tapering too. PS I love your name on here, sums it up!
Lol...stiffjointschubbycheeks describes me right about now...but somehow I think it's not a very practical choice.
I started at 15 mg...before being encouraged to drop to 12.5 after four weeks. By day three after the reduction i was in agony so much so that the dose was increased to 17 and then 20. I was on 19 but tried 18.5 for the first time this sunday. I am feeling a little stiff today...but I'm hoping a few days at 19 will do the trick before i drop again this thursday.
I honestly believe the longer the disease has manifested without treatment the ability to successfully taper is impacted. I also feel age plays a role. I have had my own fair share of side effects and am finally looking forward to seeing a rheumatologist this Wednesday.
Hang in there!
Ha ha! That could describe me very well too! I think looking back I first had symptoms around January but just thought I was feeling stiff... finally diagnosed at end of May. I’m only 51, was pretty fit and active with v busy life with kids/dog/work etc beforehand so am hoping that I will get back to that some day. Good luck on weds and with the rest of your tapering.
Thank you. You take care too. Just be kind to yourself. Take it easy....and learn to be a little selfish while you tackle PMR.
I’m not sure that focusing on Tapering is where you want to be right now. I would be concentrating on finding a dose that improves your quality of life first and controls the inflammation if not the underlying disease.
What time of day are you taking the Pred? What time of day are your pain and stiffness at their worst? What parts of your body are affected? What are your inflammatory markers , the esr and crp, ? If the pain didn’t respond to the initial doses of Pred, did the markers also not budge?
Thank you for your message. Yes I’m absolutely concentrating on trying to find the right dose at this stage... was just trying to think positively to the future and understand what a slow taper is so I’m fully informed. The GP has prescribed me 30mg which I take at 6.30am with my breakfast. My pain and stiffness start mid-back and go down to above my knees. Worst is definitely lower back, pelvic and hip areas which give most pain and stiffness, but also sides of my things v sore to touch. Def worse anytime I sit down/drive etc, can barely get up even after 10 mins. V v bad at night, cannot turn over and find it extremely painful to get up. Barely walk in the morning, need crutches when first out of bed to get to the loo etc and almost impossible to put my socks on! It eases slightly after a shower and mid morning I’m slightly more mobile, only for it to get worse after hour in car on school run late afternoon and then back into the evening. I’m presuming that is pretty typical for most people when not on steroids?? Hoping and praying I will finally get some relief later this week when fingers crossed the 30mg kicks in. Sorry forgot to say my inflammation markers are around 57 and 37 (can’t remember which is which)... they’ve gone up every month since I’ve been tested.
I'm no expert, but your symptoms sound a lot like sound like sciatic nerve pain. I remember the difficulty getting moving, but don't remember pain sitting and driving vs standing. I did have the pain driving when my sciatica kicked up when I had lower back problems.
With untreated PMR, after sitting in a car for more than a few minutes I could barely unfold myself to walk when I got out. The longer I'd been in the car, the worse it was and it was worse as a passenger than as the driver - but, even driving, the pain when I got out was awful. I walked the first 20m at least bent double. Sciatic pain is totally different,
That’s spot on how it is for me.. the actual sitting doesn’t hurt at all, it’s trying to get up afterwards even after a few minutes, but def much worse after any length of time in a car.
Andypan..I am so sorry..Although I didn’t have horrid side effects to Pred..I experienced side effects from other supporting drugs Alendronic Acid in particular,but also omeprazole and ranitidine.
I had no relief from my starting dose of 15,mg ,20mg also unchanged,all the above symptoms you describe I experienced,unable to turn over in bed or get out of bed.My husband dressed me which had it’s lighter moments,he put his glasses on to fasten my bra,it took forever, accompanied by shocking language.He managed to put my two feet in one knicker leg one morning..as I couldn’t bend I didn’t notice till I tried to move.Then alleluia!! . 30mg taken with Diclofenic was miraculous,however after 3 weeks,blood tests showed my liver was badly affected..diclofenic was dropped and the 30 mg taken alone was blissful.After a big flare a year later I started the DSNS method together with an anti histamine diet.I have since been cautiously reducing,but if I feel very tired,achy or stressed I delay it for a while.
Everyone is different but I have found this method so helpful,and this forum is the best..so supportive and informative. I do hope you find some relief very soon.😊
Thank you so much... that all resonates very much with me... I agree it’s the bending down trying to get my socks on that is a killer! I’m on day 3 of 30mg and so far no relief at all at night or first thing in the morning, still v painful and crippled... but I did notice yesterday that by mid day I felt a little bit more mobile, so maybe a chink of hope??!!
Some people may need a couple weeks - if there is a lot of existing inflammation it does take longer to all clear out and especially if you have a lot of bursitis which it sounds as if you do.
Thank you, that’s really useful to know. What is bursitis?? When I was first prescribed 20mg at beg of summer, it had no effect, so I was taken off it as had had bad side effects. Pain now so bad, I’ve decided to try again and on Monday GP now upped it to 30mg... my question is, has anyone ever found that even that level doesn’t really help and they need an even higher starting dose? When it is working correctly, is one completely pain free 24/7? Or am I expecting too much and the pain relief wears off by the evening, so nights and early mornings are back to being v painful?? I’m not sure at this stage what I’m aiming for??!
medicalnewstoday.com/articl...
You will probably have heard of it as housemaid's knee or tennis elbow. It can be part of PMR and then it mostly affects shoulders and hip joints. It may start as just stiffness but can also cause sharp pain. In the hips it tends to be trochaneteric bursitis that develops but may make people think it is osteoarthritis if it spreads to the iliopsoas bursa which causes sharp pain deep in the groin.
🤞for you..it will happen.😊
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