Diagnosed in September 2020, originally on 15 mg, thankfully and steadily reduced to 3 mg, reducing at 1mg per 6 weeks, still stiff in shoulders, buttocks and hips, put on a ridiculous 2 stone since diagnosed just want my life back to normal, now 57 slowly doing more yoga and tai chi which I love, but struggle morning and night with the stiffness, when will it be safe to be "steroid free" will I be in pain when I am completely off the pred?
Thanks Jan
Hello, so rather than reducing to zero Pred, seeing what you’ve got then off you go it’s a bit different which is often not explained. You are reducing to the lowest dose that controls your pain which really means inflammation. You are only a year in so it would be unusual for you to be ready to come off Pred because the duration of your increased autoimmune activity is more like 4-5 years I’m afraid. However, you can do two things to make life better. First is have your Pred increased to a level that stops the pain and stiffness and then reduce really slowly, probably in 0.5mg drops. 1mg every 6 weeks often makes people run into trouble with low adrenal function at some point even if the PMR is over. The second thing is to eat a low carbohydrate diet, something that really needs to be started as soon as Pred starts, to keep the blood sugars down and the weight off. This is another bit of info that is usually not given to patients as most docs think weight gain is inevitable. So to answer your question, yes you will be in pain when you come off Pred if you’ve done it too early. Toughing it out is not a good strategy either because unchallenged inflammation can lead to poor quality of life, mobility issues, sleep deprivation and potential for the worse partner in crime, GCA. I think, if you get to grips with the dosing and your weight gain, you’ll feel a whole lot better.
Only one answer: when you are able to reduce the dose to zero and remain at zero for a protracted period without a return of PMR symptoms which worsen. It isn't uncommon to get off pred and still have stiffness and aching which is the body getting used to being without pred after so long on it. It is partly due to adrenal insufficiency which can take up to a year to recover even after being off pred altogether.
And our usual advice about weight gain on pred: cut your carbs drastically, especially processed ones and added sugar. It is perfectly possible to lose weight while on pred and there are a lot of posts about it. MrsNails has a particularly inspiring story which I think can be found in the FAQs.
Hi it’s Nick from TORONTO …. If a persons weight is under control…. and no side effects from the Pred does one have to be careful with carbohydrates and sugar ,because it makes the PMR worse ,or is that just a weight issue?
Depends - some people find that sugar/simplecarbs or even some specific foods tend to trigger their symptoms but everyone is different so not possible to make general statements. Some people are fine with alcohol, some not. Some find some carbs are OK but if they binge they suffer afterwards. You have to find out for yourself. However - you can't tell about the blood sugar levels without monitoring the Hba1c.
Forgive my ignorance but what is meant by Hba1c?
Have a look at this…..it does mention that steroids can affect levels - diabetes.org.uk/guide-to-di...
It is a blood test that reflects the average level of blood sugar over the previous 3 months. A blood glucose pin-prick sample only shows what is happening at that moment - can be fine or very high, but overall trends are also significant.
Since being on pred I eat some many cakes, pastries and sugary stuff, I am my own worst enemy I have gone from 9.12 to 11.4 and hate myself, but I will take up the advice regarding reducing carbs and doing more exercise now that I have increased my Pred. Jan
Steroid free? Simple answer - when your PMR goes into remission…..and from the symptoms you describe that is not yet….
Pain free? - when your illness has gone into remission that should happen - apart from normal aches of life.
In reply to your first post I gave you a link to this post, perhaps you should glance through it again - or read related posts -
healthunlocked.com/pmrgcauk...
and also look at at FAQs for advice on controlling weight when on steroids.
Wow what a wonderful load of knowledge - particularly liked this line and one that I need to adhere to "You must tell yourself this is a long-term illness, and accept that, many find the acceptance bit difficult, but the sooner you do, the better you will cope". By reducing the steroids and causing more pain, my life is such poor quality I have finished lecturing for the moment but I am looking at home tutoring for my students to keep my mind active, at the moment I can't get up the stairs (or down) without being on all fours like spider woman! Thanks for this great advice!
If you are crawling up the stairs - you are on too low a dose of pred and it is doing you no favours. I had had PMR for 5 years when I was offered pred, wasn't diagnosed earlier, and I was crawling up the stairs at home on hands and knees and stomping down like a toddler, one step at a time. I took pred and 6 hours later walked down normally and carried a cup of tea back up - something I couldn't do before. If you take enough pred - even lecturing might be back on the cards.
If the doctor tries to tell you PMR only lasts a couple of years - don't believe him. I'd had it untreated for 5 years and it hadn't gone away and I've been on pred for over 12 years since then and it hasn't gone away in that time either. This does seem to be more common amoungst people who were not diagnosed or given pred in a timely manner. Pred has downsides - but not half as many as unmanaged PMR believe me!
Thank god others understand and have symptoms like mine crawling up the stairs, have reduced 1mg a month since the summer, I realise it is not going to be realistic dropping and tappering off so quickly. should I go back up to 6mg, will that be too much too quickly is there a danger of increasing too quickly? I need to be have some pain relief I am stiff completely in my shoulders and hips.
There is no risk with increasing quickly - just decreasing fast. What was the last dose at which you were functioning normally? That is where you need to be - but you MAY have to go higher to clear out the stored up inflammation that is currently causing you problems.
You are never reducing relentlessly to zero - you are looking for the lowest dose where you get the same symptom relief as you did with the starting dose which should be at least 70% improvement on your state without pred. Pred cures nothing - it is a management strategy to control the inflammation that causes the symptoms until the underlying autoimmune disorder burns out and goes into remision - and how long that will take is a how long is a piece of string question. You start with a dose that is more than you will need nd then taper slowly to find YOUR personal right dose, it is called titration, just like in chemistry at school ...
I think you need to go to the FAQs and do some browsing and learn about the illness you are needing to manage.
Thanks I am going to let my doctor know I am increasing from 3 to 6mg which was a good place or a 1mg or 2 higher if necessary just want to be well again.
Good for you. You should not be in pain like that when steroids are such a wonder drug.
Hi it’s Nick here again I’m down to 6 mg I’ve been on for 10 months still have lots of issues specially morning pain and stiffness my doctor still is feeling it’s Sero negative arthritis I still think it’s PMR so my question is you’ve been on the pred for 12 years to this point I had no side effects from what I can tell …So for u ,over those years of you being one prednisone ,has it created other issues other health problems side effects for you… i’m wondering in a few months if I demand my rheumatologist gets me back up to 2025 where I felt a lot better but still had issues but not as bad as the lower numbers now…..The only thing that’s been out of whack on my blood test is the CRP at 15 versus 8 is the high range in Canada … I always look forward to your replies and I highly appreciate them all the time.
Best of luck Nick thank you for your comments, really grateful Jan
See you’ve re-read my link……and hope it has helped a bit more this time around, and makes more sense now you know what I’m talking about.
But, sorry there’s always a but, I think you are still trying to push through your PMR instead of accepting it for what it is…..as you’ve quoted above. It is long term…and it can be easily managed IF you do the right thing….and that is be on the correct dose for your illness’s level of activity.
It not rocket science, but it needs patience and the courage to say no to too fast a taper (if that’s what your doctor is telling you).
You have been through worse, you will get through this albeit more slowly than you would like.
Slow and small steps will get you there….my taper is in the link I sent previously.
Your article was amazing and so helpful what is the name of the expert professor who speaks often on PMR I have heard about him at the group TrentPMR yesterday the lovely ladies and men I met
See this - pmrgca.org.uk/staff_member/...
..or just type his name into search engine ….you’ll get loads of sites.
So pleased you managed to find a group - it does make a big difference to see others in similar situations as yourself. …
Hi Jan, not much to add to the excellent advice already given, just to say that as it seems you may not be ready to be on the dose you are currently on, you should be kind to yourself and talk to your doctor about adjusting it. If you were completely symptom-free when you started taking steroids, you should feel the same now, not worse. As Snazzy says, your quality of life is really important; if you can get on top of the stiffness you will be more able to do your yoga and Tai Chi lessons as well as focus on many other essential things (diet for example) which are bound to be good for your body and your mind and ultimately help your recovery from PMR.
Thank you for this advice, I shouldn't say this but I see not reducing and getting off Steroids almost as failure, I worry sick about the side affects of Pred. and feel I am harming my body by being on it, I struggle daily with the stiffness, I guess if I increase it will relieve this pain?
Under 7mg, the side effects are considered negligible. Some people are on 2-3mg for life to prevent relapse. And yes, if you increase it should help the pain and stiffness. Pain and stiffness after several days of a decrease generally mean your dose has gone too low for your condition.
From reading PMR post I realise I am not on enough and need to increase this med thanks Jan
Not being on pred and allowing long term low level inflammation to continue not only causes disability but also depression and vascular damage that predisposes you to cardiovascular disease in the long run. It isn't as simple as pred bad, no pred good.The pain and disability will cause long term problems in your lifestyle and wellbeing - I was almost housebound at one point and certainly depressed. Pred gave me my life back - no depression here now.
Oh thank you for this advice, I do love this forum you all have such sound advice, I will increase my Pred back to 6mg where I was relatively pain relief, so grateful, I had severe depression in the summer and nearly lost my marriage of 18 years, never want to go there again, thank you for allowing me to be so open and personal, you are amazing
Were you on a higher dose of pred then? Both PMR itself and pred can cause mood problems so if it happens again don't hesitate to speak to your GP about it.
That may be enough - but sometimes you need a short time at, say, 5mg higher to clear out theinflammation. You can do that for a week or so and drop back down to the dose you want without tapering.
Great advice thanks, found a local group that meets in Barton Under Needwood where I live tomorrow, the organiser has invited me along lots of fellow suffers so glad I posted on here such a wonderful community and group thanks all especially PMRpro can't thank you all enough
My aunt lived in Barton for many years, taught at the secondary school!
Wow I went for my first face to face meeting with fellow sufferers, never met anyone with PMR in real life until then, lovely village Dorothy who runs the group lives there.
These are completely normal feelings we can all relate to. Steroids are useful, but they will not cure PMR. You need them to reduce inflammation which can damage your body, but also to be able to live a life where you are not focusing on what you can't do, but what you can. Most of the side effects of steroids are more likely to be a problem at higher doses and if you feel well enough you can help yourself by exercising, choosing the right type of food, adjusting your commitments to give yourself time to rest, spending time with your partner, just looking after yourself continually. No one expects you to be able to cure yourself overnight, it's not a race, you don't need to prove anything and you are not a failure for needing medication to manage your condition, we all do. Some of us will recover faster than others, but most people do recover eventually. The quality of the transformation you can create in your life, the acceptance, the sense of agency, all this is more important than how long it is going to take.
Hi LittleJan, It is possible you have an underlying inflammatory arthritis? I have had PMR since May 2017. I was lucky enough to be diagnosed immediately. I was on 20 mgs to start with and felt like a budgie on Trill (it didn't last) I am now on 5mgs and find that the pred doesn't control the stiffness that well but an added dose of Melobic (meloxicam) addresses it. I had a talk with a pharmacist about this and he said the two medications work in different ways. Worth a talk with your GP?
Excellent information and I will research this now, thanks Jan
Hi littlejan22 I have had so many issues since being on prednisolone (diagnosed earlier this year) that my GP wants me off them and I do too. I have ended up with GI issues and now under a gastroentorologist. I get it that I am getting older (64) but I have never in my entire life had so many problems since being on pred (oh and Lansoprazole , which I stopped taking with advice from my GP). I am down to 1mg and I spoke to my GP today and I will be stopping pred in the next couple of weeks , this is the only way I can see if my digestive system returns to normal and my mental state recovers (yes, I have even ended up needing counselling). I appreciate they fo a great job but the side effects are just too much for me. My neck is stiff and zi have some thoracic pain, but to be fair I had this long time before the PMR when I couldn't lift my arms. I am going to see what happens.
Thanks I joined the Trent group yesterday and went to meeting they really helped me, I now realise I can't reduce so low until I can be in remission whenever that will be thanks for all your kind advice and time, this is a great forum when you feel alone and like you are the only one.
Not reducing is not failure! The level of pred you need is dictated by your underlying illness. What dose were you on when you last felt more or less symptom free? You may need to go back up to something like that and then reduce again very slowly…..
All the best to you 😊
PS I’ve struggled myself with that feeling that I ought to reduce, but concluded that quality of life is more important. And as has been said above, if you are in less pain, you can concentrate more on your overall health xx
Absolutely, this is no life, not long had my 57 birthday, I was much better when I was on 6mg need to increase not sure if I do that in one go from 3mg to 6mg or slowly, just need a pain free day and like you said a better quality of life for me and my family
7 to 6 mg was a much better place, I am starting to feel low again, not interested in anything I am a university lecturer and have lost interest in myself and my students, I have realised what is happening and wanted to come on here for advice, even had a few Baileys the last few nights that has made me feel so sick probably because of the steroids, don't think it goes well with alcohol many thanks again Jan
Hi againThere are no problems going straight back up to 6mg - just that I’d suggest you keep your doctor in the loop, so they know your situation. You’ll also need an increased prescription of course 😊x
Thanks I will call him now Janet
Hope your GP is supportive Littlejan -s/he should be, you need the increase and 6mg is perfectly reasonable after little more than a year with PMR 😊x
All sorted now thanks a million for the advice really appreciate it Jan
If you find the 6 mg is not enough, don't be afraid to go up another bit. You can be the judge of that depending how you feel, but 10 mg for a couple or more days, and when you feel well quickly back to that last dose where you felt well, 6 or even 7, and after a few weeks start *slow* tapering.
Great advice I have gone from 3 to 6mg marginal improvement but at least I can move my neck and shoulders and hips now, thanks Jan
When you do start tapering, do it in 0.5mg steps and use a 'Dead Slow Nearly Stop' taper plan, which you will find on here. No drop in dose should be more than 10% of the previous dose, so dropping from, say, 5 to 4mg is a 20% drop. Slow but sure wins and always listen to your body. All the best.
Excellent advice about 0.5mg taper think I have done it too fast, body is a wreck increased my dose and in less pain will take it slower so much slower much much slower after this terrible experience of pain and hitting the wall at 3mg thanks Janet
After crying and the pain this week I will be definately be listening to my body, actually walked up the stairs on 2 feet instead of all 4 hands and feet like a toddler today, that was a glorious feeling and one I won't rush to tapper again, 3mg obviously far too low for my body.
First of all, I'd like to sincerely congratulate you if you feel you are able to wean down on the steroids (or completely off). I am jealous!I guess you'd have to talk to your doctor about it? I was always told the rule of thumb is "go low, and go slow". I would probably taper by 1/2 mg at a time (depending of course) on your current dose and go 3-5 days at a time tapering (if your body allows that). My doctor has had me on a prescribed dose of 80mgs and dropped me down to 40mgs overnight but for a term of about 5 days before another dose decrease. Seems like the less your current mg. dose the less of an amount you can dropdown. I am very sensitive to Steroids so my current dose (just dropped within the past 2 weeks) is 4mgs BUT I rotate 4 mgs one day and 3 mgs the next day. Any dose less than that and I am in HORRIBLE pain. I always have some pain but I've learned to accept it and deal with it. When it gets unbearable in my shoulders, arms, or my back I have to do a "temporary" boost with Prednisolone to sort of "knock out" the pain-causing inflammation. I know everyone is different so be careful with your taper and talk to your doctor so they are aware and can advise you on how to do it safely, with minimal body effects/pain. I wish you the BEST with your journey!!
Thank you I too was in awful pain so much so I was crying yesterday but I have gone back up to 6mg and seem to have a lot less pain, just unbearable it is a horrible disease thanks for the advice.
Try to be reassured that it is only as "horrible" as that when we're not on enough pred. Enough pred deals with the inflammation so that we can live as 'normal' a life as possible, even if that's a 'new normal'! I think you mentioned the bit about acceptance of the change in your health - rather like dealing with grief. We've all cried and been angry and wondered "why me?" but there are far worse things we could have. PMR does go into remission for the majority of people. 🌻
How do I know if I'm taking enough prednisone
Experience of methotrexate working? how do you know?
How do you know if your adrenals kick in or not?
How long do you wait to know it's a flare?
How do you know if you have adrenal insufficiency?
