I’ve been on 20 mg Prednisolone since October have tried twice to taper unsuccessfully and at the moment I feel no improvement still struggling to walk and low back muscle like pain I’m so fatigued all the time . I work 4 mornings a week but spend all weekend getting nothing much done and shutting myself away at home alone feeling that no one understands how I feel starting to feel depressed any advice would be appreciated and the question is this PMR or something else
struggling with everything : I’ve been on 20 mg... - PMRGCAuk
struggling with everything
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Omg3
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DorsetLadyPMRGCAuk volunteer
In your first post 2 months ago you had reduced from 20mg to 15mg and we all said too big a drop. What gave you done since then… and what dose are you on now?
Think you need to go back to 20mg and try reducing by only 1mg per month - if you haven’t got 1mg tablets then request them
As for work, not sure how strenuous or demanding that is, but your employer needs to be making allowances to help you. Have a look at this from CAB. and please discuss with LM, HR, OC and union rep… if you’re not in union then join… they are all there to help.
citizensadvice.org.uk/work/...
Does sound very PMR-ish and you getting out of your depth with trying to work through it… others who have been in your situation will hopefully be along to advise.
But if you arev suffering from mental health issues as well as physical then please do seek specialist medical be help, if you don’t then they will only escalate.
I do hope you get the help you need.. 🌸
yes I went back up to 20 mg then was advised by gp after few weeks to try 17.5 but again felt bad back up to 20 have been on this since Christmas feel I should be trying to lower but afraid to as I still feel unwell . My work is wait for it a receptionist in a struggling GP surgery ( failed CQC assessment) so stress levels high
The problem is once you have flared a couple of times , it gets more difficult to get things back under control. .. and there is no point in trying to reduce. I know you feel you should try- but if you do, then afraid the same is likely to happen again… it becomes a vicious circle.
As for work, very stressful for all, but they still have a duty of care- and you’ll just end up being off work if things continue as they are and that won’t help you - or them…
So sorry you are in such a predicament… but your health must come first.
Thank you for your advice very helpful
I started at 20mg and ended going up to 25mg to get pain under control. Stayed for months. I could only reduce using the dead slow method by 1mg. I also had to split my doses in 1/2 to control late afternoon symptoms. As for work, for me as a social worker I had to retire early. Best thing I ever did. Allowed me to concentrate on my health.
My husband had a hard time understanding so I gave him literature and some of the comments on this site.
It's been yrs but I'm off. Take it easy.
Finding the rate at which one can taper is so individual, and really can't taper at all till the disease process is stabilised at whatever dose is needed. Succesful and slow is better than fast and yoyoyoyo! Easier said than done! Cheer up and dont get downhearted, most of us have been there.
Thank you I think just feeling low and lonely tonight
The whole experience can be overwhelming at times. In your position I would be tempted to go up to 22mgs - even 25mgs - for a week to ten days before dropping back to 20mgs, To give yourself a boost and reduce the inflammation. Then I’d stick at 20mgs while this stressful work experience carries on. I have a small electric heat pad for bits of me that need warmth which help with localised aches and pains and is very comforting. I also afforded a physio for a muscle pain in my lower back and interestingly my physio said that the continued pain was due to tightness not the original small strain. Her massage certainly helped. Check with your tame GPs if you continue sad - this can be a side effect of steroids and you need to nip it in the bud. I’ve written an essay! You are not on your own and it will get better as you persevere- and remember how incapacitated you were before the miracle of steroids. ❤️
Do you need a bit of time off to get yourself sorted out? Can't really do PMR justice if job is so demanding and stressful. Might be a more effective way to deal with it longer term
I feel Work gives me a bit of normality if I stay home I shut myself off as if not fit for work not fit to go out
Best go slow and steady with the Pred then??
Sorry to hear of your PMR struggles and ongoing pain. It’s hard not to get hung up in the “numbers game” when it comes to dosage and tapering. Some folks stay at their initial dose for several weeks to mop up all the built up inflammation prior to starting to taper. When you add everything up together, along with the ongoing fatigue, it’s no wonder you mood is low.
I totally understand how you are feeling. Prior to being diagnosed I struggled with worsening symptoms for over 5 months. I isolated myself because I just didn’t feel like myself. The pain definitely impacted my mood and folks around me just didn’t get it. To them I looked fine given that PMR is an “invisible illness”.
We here on this forum certainly do “get it”, probably better than most who haven’t suffered with the pain and fatigue of PMR. Please know that you are not alone and that you can post anytime as need be.
Adjustments to your new life need to be made while you are mourning your old life before your symptoms emerged….no easy task. A discussion with your GP may be in order given that you are still in pain and experiencing ongoing fatigue. Sharing about your mental health challenges can result in a referral for professional support. I certainly relied on my therapist throughout my journey, especially during the most difficult times.
Hi Omg3. I'm in a "low and lonely" phase atm, too. Reduced pred from 20 to 17.5 a week ago and it now seems my fibromyalgia has returned on top of GCAPMR - ie pain more widespread, random, brainfog and feeling down. I don't work, live on my own, rarely go out. Yesterday I decided something radical has to happen, like electric shock treatment! So I have booked a weekend away in a primitive cabin, (there will be other people nearby!) set in a botanic garden, just me and dog, end of April. I can't believe what I've done! Despite feeling lousy in my ways, I am already experiencing more positive, focused thoughts. Will probably stay at 17.5 pred till then! Hoping things will improve for you 🙂
sounds intriguing, whereabouts is that?
Isle of Wight. Next to sea!
wonderful . Enjoy
I’ve done a similar thing 4 nights in Cornwall in early September
great to read that...
I hope that once you get your system in more balance by being on the dose that suits you, that you will begin to feel better physically and emotionally.
I have felt so low in my first three months of diagnosis, mostly when my initial dose was reduced by too much, so the second month was the absolute pits. Also, steroids can affect moods, so that may be a contributing factor. I didn’t realise till I read an article this week in the PMRGCAUK winter 2023 magazine on ‘Mood and sleep disturbance on long term steroids ‘. Here is the link:
pmrgca.my.salesforce.com/sf...
If it doesn’t work, send me a message and I’ll try to send you a pdf version. If you’re a member already, you should have been sent a copy by post or email.
All the best and keep posting on the forum to update us all on how you’re doing.
I’ve been a member from the start (4. 4 years ) and I’ve never been offered a magazine as far as I know.
Do you mean a member of the charity or a member of this forum? If the charity, then you will get the magazine - comes as part of your subscription… if you don’t receive then contact Fran_Benson or see this -
pmrgca.org.uk/how-to-help/b...
A member of the charity.
In that case don’t understand why you aren’t getting magazine either online or through the post… please check with Fran…
I will thank you
Perhaps they have been going into junk which I never look at .
Could be …
thank you,
I totally get where you’re coming from. Fatigue and pain are a deadly combination. Working as well … not sure how you do it.
Take the wonderful advice from the people here and take care of yourself
You're not alone. Sorry to hear things are so tough for you. I'm one of the 'lucky' ones who had a fast response to 15mg of Pred (Sept 2022), but there have been downs in mood and body and, when reducing, there have been some doses I've been stuck at for weeks or longer. Had to learn to slow down.There can suddenly be a day where life seems better, so hope that arrives for you soon. Wishing you well.
Could it be that you need more than 20 mg to get to a better place?
in my opinion you should put these questions and all your symptoms to a GP, or preferably, to a Rheumatologist
I think because her employer is a GP , and the ‘practice’ , then it must be quite difficult to even discuss her health including mental health to them, unless omg3 is registered with a different GP.
Understood. But whatever the situation may be, it’s never advisable to self medicate, especially when you are dealing with powerful drugs such as steroids… in fact mood swings are just one of a long list of side effects when you take steroids.
Of course! As a long term steroid user myself !
Sorry to hear that. I hope your condition improves. Best wishes.
Bear in mind that EVERYONE on this forum is or was a longterm steroid user - some of us longer than others. I've clocked up 15 years I think ...
Still think it’s very dangerous to self medicate, unless, as Dorset lady says, it’s under medical supervision and monitoring
My GCA was way before Covid, and when I moved surgeries my new GP said.. "you know your body and your illness better than me, so reduce when you feel you can... just keep me informed on dose, and obviously if you require help then come and see me."
Previous GP and I had monthly meetings and discussed my next reduction each time [even though she had produced a plan based on guidelines- that soon went out the window].
Unfortunately during and since Covid - for many, the interaction between patient and their doctor has plummeted to virtually zero, which is why they feel they have to go it alone - with help from us. In an ideal world, it shouldn't be like that..... but it is.
..and we do try and remember to say - check with doctor - even though that seems meaningless at times given their situation.
Didn't say it wasn't. However - what bit of people's difficulties in speaking to a doctor or, even more, speaking to a doctor who actually understands how PMR and tapering works do you fail to understand? Nothing has been said about self-medication, it has been advice about how best to use the medication given and explaining that so they can present the concept to someone to approve. This is a patient-led forum, we share our experiences and how we know it works better.
and hence the advice to seek medical supervision to use steroids should not be taken lightly
Not sure Omg3 has a rheumatologist, and as Croft9232 has said if her GP is also her employer that makes things more difficult.
Whilst I would agree that self medication should not be the first step [unless you have doctor's approval to do so, and many patients do], sometimes it the only way.
Most advice given is get Omg3's employer to recognise she has issues - and help her in her working life - and also to seek advice re her mental wellbeing.
Have today seen my gp and getting a rheumatology referral also have a meeting booked with HR and had blood test done so feeling a bit more positive now
Good -and when you can see something is happening you do feel more positive. 😊
listen to what others have suggested, Omg3, but do reach out for medical help if you’re feeling so low.
Hope you soon feel better
Good news is you can stop worrying about pred. You are at the early stage and the illness needs to stabilise. If you do mitigating things like reducing carbs, keeping an eye on Hba1c, Vit K and D, enough calcium etc, it will be fine. Plus DEXA scan is a good idea to find baseline.
Levels like 20mg can be difficult emotionally and in terms of fatigue but this will pass and you will feel happier and then back to old self.
You had a textbook good reaction to pred when you first started taking it. However you've been over a month on 20 and still in pain in lower body. Is this your PMR pattern or did you ever have shoulder aches? If so could there be also something else going on, perhaps connected to being up and down at work which is affecting lower back?
I'd suggest you see a doc who knows about PMR and have a review of what pred you need at the moment. Once stabilised, as people have said, it sounds like you are a person who needs a 1mg taper.
Also, it would be good to keep a symptom diary to see whether there are any patterns. X
HelloOmg3🙂 I'm so sorry you are feeling like this. PMR makes one feel rough and the pred although so useful that too doesn't help other things.I think you need to chat to you gp. It sounds good advice to me to up the pred for a week or so and then return to 20mg.
Yoyoing helps no-one. From my experience these chunky drops of pred might sound okay but in reality; although some do it and are fine, others like myself just can't do it.
I would request .5mg pred too. And when you are feeling able taper by 1mg every month or so until you get a little lower and then try .5mg
Don't put pressure on yourself and make time for yourself.
My son said to me the other week To think of what I can do and not what I can't. This was an eye opener and has helped me very much.
Shutting yourself away I fully understand and sometimes we just need that time quietly 🏵but if you could plan something lovely (as was suggested) this also might do you good.
I hope you feel very much better soon.
Sending best wishes
x
I can only reach out to you and send my very best. I too am relatively new to the PMR and being diagnosed in September and those feeling you are going through I am sure we all have at some point and not surprising is it? I have never been an emotional person and steroids has changed all of that, crying at times and feeling helpless sometimes but trying to find my way. Tapering is about patience and the advice I have had on this forum has been brilliant and the support is invaluable.
Again, i wish you all the very best.
PMRproAmbassador
Who diagnosed you?
Have you had any investigations or is it assumed your symptoms are PMR as we talk about it rather than a symptom of something else?
Have you had low back problems before PMR symptoms appeared?
I have a low back problem that is separate from PMR but which is made worse by PMR. It improves at higher doses of pred but responds far better to localised targeted management.
Being in constant pain adds to the fatigue of the autoimmune illness. You need to try to find a way of easing that back pain. My own go-to in an emergency has always been an 800mg flooding dose of ibuprofen and sitting in an upright position, well supported with cushions and with a hot water bottle over the painful area. It can take days - just to warn you.
An alternative is lidocaine patches - can they be prescribed in the UK? If not, you can get lower strength ones OTC though I don't know what they cost in the UK. They MUST NOT be used together with heat and you MUST only use them for 12 hours at a time and have 12 hour breaks. You can use them overnight (no electric blanket!) and take them off in the day but the effects does last.
Targeted physio for the low back problem helps - but the NHS "here are some exercises" approach is useless, you can't exercise until the muscle spasm problem is sorted out.
But either this isn't "just" PMR - there are other possibilities in the inflammatory arthritis range of disorders - or that back problem is causing the lot. That you are working still won't help but I do understand that you need it.
And I endorse everything DL said in the first reply - I'd have said it too last night but it was my bedtime!!!
My heart goes out to you. In the beginning of my use of prednisone I was told to drop quickly and would have flares and have to return to 20mg several times.
I even had to go to Mayo Clinic to prove I had PMR. I finally used the dead slow nearly stop tapering regimen and began tapering from 20 to 10 by 1mg. Then I continued to use the same method but only by .5mg change.
I did well until I got to 7mg and had to go back to 12mg to get the inflammation under control. I’m now working down again to 8mg under the advice of my Physician Assistant. I’m probably going to stay at 8mg as my baseline dose for who knows how long. And it’s okay with me.
I hope you will get the help you need and the support from a counselor or good friends. We are here for you.
Let me start by saying we all have unique experiences with how PMR affects us, we are all unique in how pred pred affects us, our needs and reduction schedules, and the availability of knowledgeable health care providers,
My treatment began with prednisone at 20 mg; symptoms worsened and 5 days later increased to 25 mg. Four days later I had a massive flare and increased to 40 mg. I had to creep from there using the no more than 10% reduction rule. Once I reached 17 mg I learned the hard way that I had to slow reductions to .5 mg.
This site and it's predecessor were my lifesaver. Because of where I lived in a remote area and the lack of medical knowledge in Canada re PMR I learned to manage my own treatment based on the excellent advice from the PMR Gurus here. It's been 10 years and for the last 5 I've been fortunate to be under the care of a Family Doctor who reads the research I share and allows me to continue to manage the condition. He referred me to a Rheumatologist when we first met and it was a disaster. "PMR only lasts 2 years! I want you off prednisone in 18 months". She refused to listen my history or anything I had to say, and forget about discussing new research.
The GP has been trying to get me to see another, hopefully more knowledgeable rheumy for more than a year. I'm in a pool with goodness knows how many others waiting for that referral and get notifications every 90 days about my status. So far I've received 4 of those 90 day notices. I don't hold out much hope that if, and when, I do get referred the person I meet will have the degree of knowledge found on this site or recent research.
Sorry, this turned into a bit of a rant.
Rant away... and quite justified.. 😊If you can't do it here, you can't do it anywhere....
Thanks DL. I respect and admire you greatly. It's just that every time I hear don't do this or that without medical advice, my hackles go up. I hate to think where I'd be if I hadn't taken matters into my own hands. (On at least four other unnecessary medications for one thing.) Mind you I research and read as much as I can on a regular basis on PMR and related issues, and other medical conditions I've been blessed with in order to sort out the jigsaw puzzle of my aging heath.
In this day and age, with the state of medical care in many countries you have to be your own advocate, or have someone knowledgeable doing that for you.
Life is good, and to me it's all about quality of life at age 75.
I know exactly where you are coming from -but we do get reminded by the powers that be (charity and forum) that we aren’t doctors… so should be circumspect with advice to others.
But as you say, if they aren’t getting advice from who they should, where else can they turn.
..and so agree agree about QOL - pity some in the medical profession don’t seem to.
Ah, but of course you need to reinforce that disclaimer. Thanks for the reminder.
I had to go to 30 mg for 6 weeks to get it under control..and still had a very hard tapering (yo-o'd a lot), but finally am at 17.5 mg and refuse the Docs request to taper more than 10% at a time or every 3 weeks. So far, they have relented when I refused. I also had to split the dose.
Don't give up just yet, and I do know how depressing it can be. I was relegated to my recliner, also for along while. In fact, that is what tell the docs, that I refuse to be back in my chair 24/7 and I ask them if they would live like that? I am recently back to work, but it was a long haul..it'll be a year next week I started the Prednisone.
Possibly try 25 mg at least and see what happens?
I understand completely. Working gives us a feeling of normalcy (if that's even a thing). I can no longer work due to complications of PMR and Osteoporosis. I have not much choice but to be housebound at the moment. Can your employer do reduced hours. I find that financial woes add even more stress. I'm currently having issues with anxiety and depression. Everything seems to have built up. But the tapering "plan" the rheumy has me on is ludicrously fast. I see GP this aft and hopefully we'll get this mess sorted. I have not been tapering at the prescribed speed, but on a downward trend just to shut them up. It's a blow to have to stop working but definitely consider cutting back.
I know it's hard, but try to complete your profile, including a summary of the symptoms leading up to your diagnosis, and since. Consider including your approximate age, too, as this has a big impact. Depression is a logical response to the torture of PMR, especially when you are having to 'push through' the pain and fatigue.
I would not be tempted to self medicate (increase / decrease) I did this recently, went from 15mg to 10mg for a couple of days and, errr, had a very uncomfortable Saturday night with my shoulders. Doc said it was too big a jump and far too soon. I am lucky, I started my pred and it pretty much worked within a few days, however, it is an illusion. It is still there. Maybe look at changing the time of day you're taking it? I have to take mine at 5:30am for the morning ahead. I did take it later but it wasn't as effective. The important thing is this: Whatever the difficulties with your situation you have to take care of your mental health so go speak to your doctor. Honestly, put any fear aside, speak up. Who knows, it might not be PMR, it might be something completely different that needs a different medication. Or it might still be PMR but needs a different dosage or treatment! You will need a medical professional to tell you that. And it's tough to get going sometimes 😮💨 (I think most folk in these forums would agree it's tough!), but you can do it, because you deserve the correct treatment 👍 So go ask, see what options you have 😀
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