I was diagnosed with PMR in August 2019 and my GP started me on 15 mg per day steroids plus other medication to offset the effects of the steroids. I immediately started to feel much better but when I dropped down to 10 mg per day I had a flare and had to go back up to 15mg. Since then I had reduced very, very slowly and I managed to get down 4 and a half mg per day and remained on that for about 3 months. I was feeling OK and decided that perhaps it was time to try to reduce to 4mg per day but then I began to feel bad again and I have now raised the dose to 7mg per day but am not feeling any better. I'm now wondering about going back up to 10mg per day but I am reluctant to do this as it took me so long to drop down to 4 and a half. your advice would be appreciated. I have spoken with my GP but she just advises another blood test in a couple of weeks. I also asked if I could see a rheumatologist. She quoted 'guidelines' and said there was a waiting list of about 6 weeks and that we should wait and see what the results of the next blood test are. The last blood test quite recently came back as 'normal' but I'm never quite sure what that means exactly. I'm getting very despondent now and beginning to think that this awful condition will never end. I am 82 and live alone. I have friends and family but my family do not live close by. I was always so active enjoying walking, cycling and gardening. Thankfully I have an electric bike which I can still ride but only in the summer months. This forum has been such a comfort to me knowing that I am not the only one suffering from PMR and that there is help out there. Special thanks to PMR PRO who seems to be so knowledgeable.
Feeling very despondent: I was diagnosed with PMR... - PMRGCAuk
Feeling very despondent
Well done with your taper, the purpose is to get to the lowest possible dose that controls your symptoms. It is amazing how sensitive this is. Your ideal dose was 4.5mgs and like many of us you were pressured into reducing beyond this point. Now your inflammatory levels are having a field day, but this probably won’t show in a blood test because you are on a significant dose of Pred that will suppress it. My Rheumatologist ( for GCA) notes my blood test results but is guided by my symptoms with my treatment guidance, largely because she really understands our conditions. Give your inflammation a chance to settle and aim to creep back down to at least 5 mgs and honestly I would stay put until the shoots are poking through the ground in February and you can smell things stirring in the air. My spirits always rise in February. Do prevail upon friends and family to help you get out over the winter and on those rare crisp sunny winter days, get your self out in your electric chair - even if it’s 20 minutes round the block.
It is normal for PMR to be treated by a GP. Not ideal at the moment as you can’t get to speak to them very often and the whole of the NHS is under pressure as you know and somewhat inaccessible. You’ve got us though. Keep in close touch. We know exactly how you feel.🌱 x
Thank you Sheffield Jane. Do you think I should stay at 7mg a bit longer then? One of my biggest problems now is getting up out of my arm chair if i've been sitting for more than half an hour. I have diffculty standing upright and have to stay bent over and holding onto to something without moving for about half a minute before I can stand up straight and then it takes several more seconds before I can put one foot in front of the other and start walking. Once I am walking I am fine. I wonder if anyone else has this problem or is it just me? It's no nearly as bad when I have been siting in an upright chair.
see PMRPro’s reply, I was wondering about that and if it were me, I would probably try it. X
Yes I have had the armchair thing and as you move it gets better. It happens now as I leave my front door, go down two steps and hobble down my paved path - then I am fine to walk.
Its very strange isn't it? People see me walking normally and think there's nothing wrong with me! They don't see me struggling to get up out of a chair, trying to stand up straight and put one foot in front of the other! I feel so stupid sometimes! I'm glad I'm not the only one ...
Believe me, you are not alone! I have a big swivel chair, like an upholstered armchair but higher. It has wide arms and I can use those to help me stand up and then get my balance before I set off and has been an absolute blessing. Now if I ever sit on my 2-seater sofa (at the polite request of my dog who does like a cuddle), I could be there for days. The swivel chair was bought before the onset of pmr but I would be in a bit of a pickle without it. In the meantime, a large cushion might help on the seat of your chair?
You've described the getting out of a chair bit extremely well....that was one of my most difficult things. I'm currently off the pred (wayhay!) and have been for 7 months now, but that difficulty getting up from sitting comes back to haunt me every now and again, especially earlier in the day and if I've been sitting for more than half an hour. So car journeys of any substantial length are the worse, but they're not very often thankfully. As you say, once you've straightened and begun to move it eases. So keep your pecker up, as this does improve and there is life after pred. As SJ says, try to get out even just for a stroll on the drier days, wrap up and enjoy the bit of sunshine we may have. It makes a big difference.
well said: most of the battle with auto immune disease is managing the psychological distress that can come from the roller coaster of highs and breakthrough lows. Tapering seems to be such a hurdle as once the dose becomes single digit, with the goal within reach, we are beset with hurdles like flu and bronchitis etc. having faith helps/ as you rightly say Jane, Spring is a joy to uplift and encourage Agee the dark mornings and too soon evenings. So many lively people here who have enjoyed an active lifestyle find it hard to relinquish their powers. Count your victories and be graceful about the rough times as they will pass. Good luck! An electric bike is a dream!
"said there was a waiting list of about 6 weeks"
In her dreams I suspect!!! Where in the UK are you?
Try taking 10mg for about 7-10 days and then drop back to 5mg and see how you do on that. It is a standard way of catching a flare due to overshooting the dose without going to a higher dose for long. A bit of a spring clean before going back to just dusting ...
Many good rheumies tell their patients not to try reducing during the colder months - and never close to a busy time of year like xmas.
"Normal" means the results fall in the normal range - a range that covers the levels found in 95% of a very large population of nominally healthy people. But it isn't a range that applies to the individual patient, if your personal normal is low single figures, as mine is, then if it reaches the mid to upper teens it will still be classed as "normal" but it is showing there is increasing inflammation in your body. For some people the number does track the antics of "their" PMR but while you are still on almost enough pred it may take some time to go up so can be misleading. And many other things can send it up so without symptoms a raised value shouldn't result in a knee jerk raising of the pred dose. Equally, symptoms without a raised blood level SHOULD make an increase worth considering. Symptoms ALWAYS trump lab results.
I don't think you really need the effort of a rheumy at present - your GP sounds fairly sensible and some rheumies believe in the 2 year myth for PMR so you might meet one who tries to force you off pred or add another drug like methotrexate. It will be slow from here anyway - waiting for adrenal function to return and - sorry - but adrenal function also falls with age. The symptoms of poor adrenal function can also be similar to PMR - very confusing.
And thank you 
Thank you PMR pro for your advice. I will try going back up to 10mg for 7 - 10 days. I live in Bath & North East Somerset. My other worry is that I think I have sciatica as I have had pain in my lower back, left hand side, which also goes down into my leg. Don't know how they can diagnose this though. I did mention it to my GP. I had a dexa scan about 6 months ago and the result was that I have low bone density which I suppose isn't suprising given that I have been on steroids for more than 3 years and am now 82. Looks like it's all downhill from now on and I used to thank God that I was so fit and healhy before I had PMR. We just don't know what's round the corner do we?
We don't - maybe as well sometimes! I've been on pred over 13 years, no bisphosphonate, just calcium and vit D and my bone density isn't much different. It all depends.
The sciatica could be due to piriformis syndrome - that muscle can pinch the nerve. How mobile are you? There are stretches that help. So does 800mg of ibuprofen (with a meal if you don't take a PPI) and a hot water bottle over your lower back! My go-to in an emergency,
myhealth.alberta.ca/Health/...
I do them on a bed not the floor (I'd never get up again!) but if your bed is soft you may be able to get a board for doing such exercises - jinasc was talking about them but I can't remember how you get one. Hope she'll see and reply
Don’t even go there caftan. You are a fit woman interrupted that’s all. X
Do you mean not to bother with the exercises or taking Ibruprofen? I'm just taking paracetamol at the moment, sometimes 2 Cocodamol at night if I feel I need it.
I assumed she meant this comment of yours "Looks like it's all downhill from now on" and is saying don't be so pessimistic!
The “ downhill from now on” remark. The order these posts appear in can make a nonsense of a conversation. PMRPro gives really good advice obviously. 😂
I will try to be more positive but it is hard especially at this time of year and I used to be such an optimist ...
Your positivity will return, this is a rotten disease and the adjustment is big. Don’t let your thoughts spiral downwards. Do something pleasant and distracting. It really is so dark at the moment, sometimes it doesn’t seem to get light. A few fairy lights can be cheering. X
thank you SheffieldJane🤔👍😁
So sorry to hear you're feeling despondent. I've been there too, we all have I suspect. This time of year is so depressing - the dark affects our minds and makes us depressed (well it does mine!). The cold and damp makes our muscles and tendons tight...I think that if you're in pain you'll just do less and less, so it's better to increase for a bit. As Jane says, when signs of spring are here you should feel better, and then maybe reduce again.
Most important is to keep moving those limbs, to keep up your mobility.
And go out every day - it always makes me feel better.
Best wishes to you
Thank you Blossom20. I do so agree with you about trying to go out evey day if only for short time. I did go out yesterday even though it was a miserable day and I felt so much better for it and I was surprised by how far I could walk once I got into the rhythm. I try not to walk too far though because the chances are I will suffer the next day as has happened once or twice. Looking forward to getting back on my bike once spring arrives ...
Hello PROpro, I have followed your advice re going back up to 10mg for 7-10 days. I am not feeling any better so far and today will be day 8. What should I do if I am not feeling any better aftr 10 days? My shoulders have started aching again since the flare started in October and I have been gradually increasing the steroids since then. I had been down to 4 and a half mg for about 3 months and was feeling quite good before the flare.
You need to discuss it with your doctor. The measures you have taken but which have failed suggest this isn't a flare due to overshooting the dose - which was a fair hope - but possibly either an increase in the disease activity itself which does happen for many people or something else. It is disappointing but not uncommon. It happened to me - 5mg was OK, I tried 4.5mg but then, out of the blue, my legs started aching and eventually it was a good going flare.
It DOES underline your request for a referral though - and the Royal National Hospital for Rheumatic Diseases has a very good reputation. How long it will take is another matter - but worth a try.
Hi,
couple of links to look at, first regarding dealing with flare, but you've already been given good advice on that, but might reinforce info.
second one is on adrenals, which come back into play on lower doses.
Blood results - as you say "normal" can be vague, but they should be with Pred - but that just means inflammation is under control, but you still have underlying illness. But do watch if they escalate - a one-off reading once in a blue moon telling you nothing really.
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
Thank you Dorset Lady. I will take a look at those links
Hello Caftan, I was diagnosed in 2015 and got down to 5mgm last year. I had an asthma flare with hospital. Was given high steroid doses for 4 days in hospital but was prescribed to taper 10 mgm a week and couldn’t do it after 12.
So I started tapering all over again - and it was harder.
One regret I have was allowing myself to get comfortably lazy. Because of covid I did not go shopping and allergens were high outside. I became very deconditioned at 80. The less I did the less I could do. Try to avoid that. I have a stationary bike at home and watch my favorite shows so it’s not so boring. It has helped. I also find whatever exercise I like online.
Exercise helps with the inevitable Depression.
Yes we all love Pro!!
Caftan, I do feel for you....your PMR journey sounds very much like mine except I started in May 2017. I got down to 3mgs for quite a while but when I tried to taper lower I flared and now I'm back on 8mgs. I did all the suggested things for dealing with a flare & went back up to 10 mgs for a while Blood tests showed raised inflammatory markers. My doctor suggested I stay on 8 mgs which is where I currently am. It IS disheartening after managing to get lower to have to be up again BUT let's give three cheers for steroids and their wondrous relief when we need it. Also three cheers for this forum and all the wonderful people on it who are so willing to share advice and bring comfort
Oh I do feel for you. This is such a confusing condition and just as things seem to be going well an upset can happen. I was beginning to think the taper I was on from 6 to 5 was too much then voila I wake feeling all is fine??!! So I continue 🤷♂️ or should I?
And to feel so vulnerable is awful especially if you have always been fit.
Rheumy said to me that he goes on feeling rather than blood results. In that case you are the best to know.
Thinking of you and remember once an optimist always an optimist- you just can’t be ALL the time.
I would bump up to 10mg to see if that helps sadly steroids are our only weapon to combat inflammation when one has a flare like yours but I am no expert just what I would do... I always say my blood tests are “normal” for someone with PMR because my sed rate is typically high end of normal and my CRP is always high, CRP is more of a long term indicator of inflammation and sed rate is more acute indicator at least to a point is how I understand it.. hope you get back to 4.5 and less pain soon!
hi caftan. I’m sorry to read you’re feeling despondent. Please don’t be: we all on here to give support and help when we can.
your story mirrors mine, tbh. I was diagnosed in March 2020, also put on 15mg and like you I’m tapering very slowly down to 4.5mg. This is the third time I’ve started a taper, but I’m hoping this won’t create a flare this time.
If I were you I might be tempted to go back up with your dosage, just to make you feel some improvement. It’s best to taper extremely slowly, even if it means staying on the meds for longer than we’d all hoped for.
Aren’t we fortunate to have PMRpro on here, not to mention all the other amazing “experts”. I don’t know where I’d be without this site. Keep smiling - and keep posting. x
Hi Caftan, I really feel for your situation, so frustrating to get down to single figures then on comes a flare! I started this journey in October 2020 and am now down to 3.5 but often feel stiff by the end of the day and have great difficulty getting out of chairs! Also heartburn has returned with vengeance for no particular reason. I live near Bath, maybe we could meet up and compare notes and hopefully cheer each other up? You could message me via the chat function if you like, always happy to meet a fellow sufferer.
Thank you GrannyJane. I will try messaging you via the chat function. It would be nice to meet up
Hi Caftan, I feel your pain - last Monday I put in a post entitled "sad and in pain" because, like you, I had reached such a low ebb and felt so hopeless. With the support of this amazing forum I decided to increase to 8 mg (from 3.5) and have yesterday and today taken 10 mg because my arm still hurts. However, I feel much better in myself. Accepting that pred, despite potential side effects, is our main salvation makes life simpler! I hope you feel better soon xxx
Dear Caftan, I do sympathise! I'm the same age as you and have similar problems with moving after sitting down. There are some practical steps you could take to help yourself get moving. I decided to get an armchair that had a higher seat, so easier to lift myself out of. Because I'm waiting for a knee op, and have arthritis in my shoulders, one of which is frozen, heaving myself up was getting painful and not helping. My daughters persuaded me to buy an electric chair that tips me out. That one helps if I need to have a nap and get myself back on my feet.
The temptation can be to rely on these aids which will have a detrimental impact on your fitness,so you are doing the right thing by keeping as active as you can.
The problem with mood is also something I identify with. It is so easy to write yourself off as being useless. I dont know if you talk to yourself out loud like I do, but I got into the habit of telling myself off for being stupid, not trying hard enough, After a while I realised that was making me feel worse so I make a point now of praising myself for everything I achieve, even if it is just getting up on my feet or putting the washing in the machine. Sounds silly but it works.
I can't be the person I was, but I'm still volunteering at a project that I'm very involved in, and making myself useful, while trying to look after myself. Support from my family is very important to me. Like you, they all live far away, but they phone me every few days, we have a family WhatsApp page, and they make time to drive up and see me when they can.
Keep moving, keep taking the pred, make a fuss of yourself, you deserve it.
Hi. I'm very similar to you. On Pred since 2017. Got down to 4 5mg and was fine. Tried 4mg a year ago and had a flare up. Convinced my doctor with reference to the information from this superb website to allow me back up to 9mg. Been tapering down and now back to 4.5mg. It took a year and lots of patience but I got there and you will too. Maybe this is my level, so am reluctant to try the dreaded 4mg. I'm fairly relaxed about not getting to zero as maybe my body can't cope. Good luck and keep positive. I read about lots of people worse off than me.
Thank you Utters. I was interested in the fact that you persuaded your doctor to allow you to go back up to 9mg after tapering down to 4.5. My GP has pretty much let me taper at my own pace for the past couple of years. She knows of my recent flare and that I tried going up to 7mg (which has made no difference) but I haven't told her that I will follow the advice of PMRpro and go up to 10mg for about 7 to 10 days. Hopefully that will work. Take care.
Hi Caftan, I do so understand how you feel, but do stay positive and concentrate on the things you can do and especially look forward to spring. I have had a couple of flares and am now tapering from 5 to 4.5 and it’s been near 3 years and know that is a short time compared with some people. I am grateful I have steroids and am realistic that I might have to stay on them but if it gives me a decent quality of life then that’s ok. I’m not a very positive person at times and struggle but this site and the people here with their expertise is an great support. I’m just about to ‘rush’ outside and chase the parakeets off the bird feeder. Stay strong and take care.
I am so sorry to hear you are feeling despondent #canftan. Like most tyrants, PMR is among other things, unpredictable and variable. Have you told your GP that you are feeling despondent? She.needs to care for all of you, not simply your chemistries. I too have struggled with the ups and downs of this disease and have engaged in online.psychotherapy as an additional tool to support me on this journey given how.crazy it can be. Itnis wearing and one's resilience is.greatly challenged. Perhaps your doc can suggest a resource. You might also want.to ask your GP about circumstances where it is appropriate to step out of the "guidelines". Guidelines are not rules . Even the law looks at things case by case. Request an exception, or how.one.goes about obtaining an exception given your circumstances. Take care.
Completely agree with you re this forum. I really don’t know how I would have coped these last three years without the support and advice that I have had. Take care and all best wishes….keep thinking of all the spring bulbs that will soon be poking their heads out!!🌷🌷
Thank you Tapestry, I will try not to lose heart
I went through the same thing when I had PMR until I heard about PMR PROS Dead Slow method. I embraced it, used it, taught my GP about it, and finally was able to get off the PRED completely.
Thank you montebello, where can I find PMRpro, dead slow method?
Under Tapering in the FAQs
Hi Caftan, as you can see, there are lots of us in the same boat. I also had difficulty when I got to 4mg, and have decided to aim for 5mg and stay there for 6 months. My rhumey is happy with that. A doctor once told me, it is very important to have something to look forward to every day, even something small like sharing a chat with a friend while enjoying a cup of tea, (my sister has a glass of wine) even if it's by telephone, facetime or Zoom. It really helps if I go to bed thinking about that or a new book I want to read, or better still, getting into some craft stuff that I really enjoy.
All the best, it will improve. xx
Thank you craft-grannie. That's such good advice. I try to see friends as often as I can as it really make me feel so much better. I love board games especially Rummikub and Scrabble which I share with my friends on a regular basis. I have never been one for arts and crafts peferring always to be outside but in the winter you do need something to do indoors so we have regular get togethers as well as belonging to our local U3A Scrabble and Rummikub group which meets once a week. Carry on crafting ...
hi caftan. My husband says pmr is a “cryable” illness—he coined that while comforting me during one of my woe-is-me-will-this-never-end-blubberings. The holidays makes it all the worse for me—not pain wise but I-can-no-longer-walk-the-Christmas-tree-festival wise because I can’t stand that long, I can’t walk that far, etc. and we won’t even mention Covid fears. In the meantime I shall perk up because I always do, and I suspect you will feel so much better when you up the pred for a few days, just wanted to let you know we’re all here for you—and for each other.
I remember feeling awful when taking 3mg. of prednisone and my doctor told me to bump it up to 5 for a week to give myself a break. Two days later I was feeling just as bad and thought perhaps it would be best to push ahead and get off steroids completely as I had been on them for three years.
Three months later I was given the tests for adrenal glands and I was done with steroids. It was hard and I felt awful most of the time but I felt it was for the best. I am now trying to get some of my strength back from three years of doing little and feeling bad. It isn't happening fast enough for me but I am now 87 and perhaps expect too much but will keep working at it.
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