I am currently on a high dose of Pred (22 per day). I feel this is the bare minimum my body needs, and I actually possibly need more. If I take, say 22.5, I feel much better. I'd obviously like to reduce the dose if possible because of the side effects of Pred , but every time I go down to 21, even when I use the DSNS method, even the next day after it feels like my inflammation and symptoms flare. I get stiff in shoulders, hips, chest. In the past when I have pushed on, it has resulted in a flare and I have ended up on an even higher dose, at one point about a year ago I was on 30+.
However my rheumie is convinced that this is just withdrawal pains and I should push on. My CRP is slightly elevated, around 18, but it has been below 8 when inflammation was under control with depo-medrone injections a few years ago now and when I had a GCA scare and took 40mg Pred.
Again, I think this is a clue I shouldn't take less but she doesn't believe in increasing Pred to chase inflammatory markers. I am stumped what to do, torn between wanting to try and reduce as I'm really struggling with side effects like insomnia, water retension, difficulty losing weight, mood swings etc etc but fearing the effects that usually happen from past experience.
My understanding is that withdrawal pains are usually a kind of 'achey' feeling that can be relieved by paracetemol and things settle down after a few days. Mine is not like that, it feels more like inflammation not being under control (PMRPro's 'dripping tap' analogy). I took 21 yesterday, back to 22 today (one day new then 6 days old) but I feel rough and stiff today.
I really don't know what to do. An added factor is that I know from experience (had PMR over 10 years now) that winter is not a great time to try and taper.
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tangocharlie
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It can be a bit difficult sometimes - SW can vary from just feeling a bit off colour to a return of symptoms pre diagnosis (so much like a flare).
My SW was just feeling yucky, short tempered, bit clumsy.. almost premenstrual (even when that had stopped many years previously).. can be helped by paracetamol whereas as flare won't.
This post - explains a bit more and the replies contains other peoples experiences...which might help you..
Thanks for the response and info. I get the theory, I just can't tell which it is I've got unfortunately. And if I get it wrong things get worse. I've taken paracetemol, didn't help, I still ache in all the PMR places. Aaargh ....
I'm with you, sister! We long timers must support each other!
From my experience of countless flares, mostly not after reducing but after stress of one kind or another or maybe just disease worsening, it is very hard to tell what is what.
If you look at my recent post you will see that I have been having the worst flare ever and I can tell you that it was definitely a flare- I felt very ill, not myself, aching all over and a lot of pain in shoulders/neck. I couldn't get comfortable in any position. In a way it was lucky for me that that was reflected in my CRP going up to 43 and then coming down again to 28 about 10 days later after I had gone from 11mgs to 22.5 mgs. That helped me to realise that the Pred was working as otherwise I didn't feel it straightaway. (I don't have regular blood tests)
I reduced to 20 about a week ago. I am still having some shoulder issues and still not sure if the flare is over yet, but am persevering with reducing as the side effects are so awful too. we are between a rock and a hard place. If, after over 10 years of experiencing this first hand, we find it hard to know what is causing what, how does a rheumy know any better?
I have no useful answers for you- it is all trial and error I'm afraid.
Interesting you are in a similar boat, but so sorry to hear that. I haven't been on here for ages mainly because I've felt so low and not known which way to turn next. I'm also if I'm honest a bit peeved that my rheumie is ignoring my thoughts on the predicament and I'm effectively being told I'm taking too high a dose, yet I feel I know my body well. I don't think my inflammation has ever been adequately controlled because doctors have gone by how they think things 'should' work. I'm tempted to push on and see if my CRP rises, as it usually does, but then I have always ended up on an even higher dose, it's a big risk. Like you say, between a rock and hard place .... I don't think even the experts like my rheumie know much about long-term PMR and how to manage it, we know little enough about 'normal' PMR. Keep going Sister! PS going by your user name I'm guessing we're about the same age? I'm 61 now, was 51 when diagnosed
Yes, got PMR in March 2012 aged 52. So, 63 now. It took 2 years and a PET scan to get a definitive diagnosis with even Prof Dasgupta convinced I didn’t have it . Told I was too young etc. and forced to reduce too quickly. Many many flares too. I can actually feel the inflammation when it happens and suspect I’m not on enough Pred most of the time. Dr. Hughes does not believe I have anything other than PMR.
The coincidences in our stories are uncanny. I was 50 when I got PMR but it took another year to get dx. 3 years on, rheumies who were supposedly experts in PMR didn't believe I had it because I was 'too young' and even if I wasn't 'it would have gone after 2 years'. Many wrong diagnoses including fibromyalgia until 2015 when I pushed for a PET CT scan which confirmed I did have PMR all along but I got no apologies. Constant flares and discomfort all along and here I am 10 years later, worse off than ever. I wonder if anything has changed for people who get this in their 50s nowadays?
"I wonder if anything has changed for people who get this in their 50s nowadays?"
I doubt it. I think our 3 rheumies need to be brought together over us - all young when it started, delayed diagnosis (I get the prize there at 5+ years), long term patients and a bit atypical in other ways too, They are at least the questioning sort!
Excellent idea, maybe we can get them to talk to each other on zoom on something. I have an appointment with S in January so will mention it then. Meanwhile I want to gather evidence or at least anecdotal stories of peope in the same boat, dx young, have long-term PMR, possibly getting worse instead of better and in any case needing high doses of Pred eg you, me, Suzy1959 and others. Skimming through threads quickly I read you are responding well to TCZ, that's great news.
You explain it very well here, can you use the same words with your doctor? Have you been offered any steroid sparers? It does seem the disease process may be becoming more resistant.
Tried Leflunomide last year (did nothing except give me peripheral neuropathy) Methotrexate which I had to stop because theside effects were too grim and currently trying Hydroxychloraquine the last 2 months and it'll be another few months at least to see if that helps. You're right, it could well be that the PMR is actually getting worse rather than better as it seems to be interlinked with other autoimmune things. That's a possibiity never mentioned, it's always assumed the disease will somehow burn itself out and go away, but that isn't the case for everybody.
Have you kept a record of how flares have developed in the past? How do you feel at the end of the 6 days back at the higher dose? Have you any chance of getting a 1/4 of a tablet?
The hard thing is that withdrawal DOES often imitate the disease for which you are taking the pred in the first place which does make it very difficult. What happens if you reduce on one day then stay on the higher dose until you feel better again? How long does it take?
All good questions, thanks. So far I've only tried reducing for 1 day at a time, the very first step of DSNS. I feel better when I go back to my normal (old) dose the next day. Like this week it was 21 on day 1 (Monday), felt really stiff onday 2 (Tues) but took 22, then carried on as usual 22 each day, but still feel stiff now even though gone back up. Of course the variation could be down to other factors like less sleep or cold weather. It's so hard to know. I guess I'll just have to persevere and like you say, keep a detailed record of what happens
Not heard of OCSE but I taught my nephew to 'PEE on it' in exams - make your Point, Expand and Explain and once he started doing that his grades shot up
Flares have often come from reducing steroids, particularly when I was messed about on the D-M injections, things were going great until then in 2019, all under control, living a great life. They also come on if I 'overdo' things, though it doesn't take much eg physical activity, going on holiday. It seems to me like if I lose control of the inflammation, things escalate
DSNS is likely to inspire fewer flares since the reductions are both shallow and infrequent, but that doesn't mean you will not experience some discomfort due to a change in the level of cortisone in your body. However, flares of inflammation due to other causes - stress, injury, infections, lack of sufficient sleep and rest - or seemingly due to nothing at all - can and will occur.
Before we had discovered Tapering Plans (thanks Ragnar). I was on 60mg for GCA.
When I was taking a drop (10% at a time) I picked a day and cleared the decks for 5 days.
I did read a lot and did jigsaws - but when friends asked me out - no thanks I am not in a position to go out and about for a day etc.
The first couple of days were sort of OK but then it improved. I waited a week or two then started again.
I had reasoned that using pred was just like taking any other drug (street type) and when you tried to take it away, your body resisted as it had got used to having it around. Whether this was right or wrong it sort of worked for me.
Then I met Ragnar and PMRpro and myself devised a tapering plan each. Then when we talked about it, discovered others had devised a plan. However DSNS was subjected to a small trial.
I know that each of us are different and I know how hard it can be - you can only keep on trying.
Perhaps try even slower, say 1mg per week and a wait of 7 days and then another 1mg drop and see how that goes.
Thanks Jinasc, I can see where you're coming from and it's worth a try or I'll never know, and nor will the Drs. January might be a good time to clear the decks and detox. OMG just looking at the diary that's only 6 weeks away, how did that happen?
I hear you! It can be so challenging to figure it all out, even when we’ve become good at listening to our bodies and following bloodwork results.
Trying to discern between pred withdrawal, a flare, and now adrenal insufficiency, can leave me second guessing my ability to correctly diagnosis what’s going on and move forward with a plan to address the issue. Sometimes the answers come over time, and gratefully my GP has been very helpful. My rheumy is also helpful and flexible, willing to try different doses, tapers, and medications. Both of them also listen which is invaluable!
When I got stuck at 9mg for about 18 months I got SO frustrated and disheartened when no matter what I tried, I always ended back up at 9mg. I made 4 or 5 attempts to lower my dose during that time, with at least a month or two at 9mg between attempts. Longer tapers, small drops, and real attempts to avoid stress still resulted in flaring, to the point my GP could almost predict it based on bloodwork results, and my sharing where I was in my taper and my symptoms. I was fortunate to quickly address all but one flare by doing a 7 day pred burst (e.g. 12, 11.5, 11, 10.5, 10, 9.5, 9).
It took on-boarding Methotrexate (something I resisted for a long time), to effect any change. I’m lucky in that so far I can tolerate it well. I’m also very fortunate that taking pred for 4+ years has not resulted in a lot of side effects. I acknowledge that being “stuck at 9mg is different than getting stuck at higher doses. Higher doses often result in more side effects (hence why the medical professionals harp on about lowering our dose).
I also understand that others are not so fortunate and solutions aren’t easily found. I noted your CRP is 18, but you’ve managed to reduce that number to 8 when the inflammation was well managed. At least the rise and fall seems an accurate, reflective factor, and your rheumatologist should recognize it as such. Having to endure constant pressure to reduce your dose, while in the throws of a flare sounds frustrating and exhausting (as does dealing with insomnia). Surely she knows that you WANT to lower your dose, but you also need to be able to function. Your other post mentioned an exploration into enteric capsules with limited success…maybe you could try a sleep medication (although not ideal to onboard another medication). I also wonder about the length of time it took to be diagnosed being connected to long-term PMR. Seems to me it has been posited on here that the longer it took to get a PMR diagnosis (while the inflammation persisted), the longer the condition persists.
I really do truly feel for you and your situation and wish I had more insight/solutions to share. Other have responded with some great suggestions, resources, and of course, compassion. We support you in your efforts to figure it out and “get it”.
Thank you so much for that lovely reply, so articulate and a great summary. I have a brilliant rheumie but there is so little knowledge about treating long-term PMR that even she doesn't have any answers. It's the frustration of being told that I'm only on a high dose because I haven't weaned off rather than acknowledging the possibility that I actually need a high dose that has got to me. I've had 10 years of being told the wrong thing and given the wrong treatment so that makes it harder for me to trust what they say. EVERY TIME I've reduced steroids my CRP has shot up, I can even usually predict the reading by how my body feels. I had to stop MTX because of side effects, I am currently trying Hydroxychloraquine as a last resort. I tried Nortriptaline for sleep, 1 tablet wasn't enough and 2 made me too drowsy the next day, and the constipation was awful. Ditto Mirtazapine (an SNRI) and I think I'm going to be switched to Sertraline, an SSRI that might help my low mood and the Mal de Debarquement syndrome. I think I'm bordering on despair now, despite previously being a cheerful and resilient person all my life. Your empathy and all the support and encouragement people have expressed in answers to this thread has really helped me, I'm so glad I came back on here after months when I couldn't face it.
From my own experience, please remember that insomnia can cause all these emotional /cognitive symptoms. I haven't been depressed but have shed buckets and buckets of tears recently, every day, with no emotional resilience at all. I have not felt like myself. Now I am starting to sleep better, I can see the difference already. Do not underestimate the impact of insomnia and there is a natural / non Pharma cure for it!! Not easy but it does work!
Obsolutely! That's why I'm DESPERATE to get more sleep. I'm trying medical aids, my GP is trying to help, but also do the mindful breathing, body scan etc. I'm not tired until at least 2am or 4am. I take the Pred in enteric capsules between midnight and 2am I've read every book on sleep going and do all the things they recommend ie no screens, computers late night, no caffeine after 5pm (when I have my last meal).
As well as PMR I have this weird vestibular disorder that feels like I'm on a boat, constantly swirling and bobbing up and down and it's worst when lying or trying to stay still like sitting. Drs think it might be something called Mal de Debarquement Syndrome (MdDs) but there is no cure or treatment and I've had it over a year now, this time round, it crops up every few years triggered by travel such as a rough boat trip. I'm trying not to worry about sleep as I know worrying only makes things worse, and as Guy Meadows says in his book worrying is only telling yourself you have a problem, not solving it. But sleeping from 5am to 11am and then half the day is gone gets me frustrated which I know isn't helpful either. What works for you, I'm grateful for any ideas? I've even contemplated buying illegal meds off the internet eg diazepan but it's too much of a risk and too expensive. I'm really into mindfulness, do meditations, keep a gratitude diary, challenge negative thoght patterns, do things that make me happy as often as possible (when I have the energy). The MdDs is known to cause anxiety and depression - as does living with any long term illness.
what I am doing is CBT for insomnia through a sleep clinic. All the cognitive stuff is useful but it is the behavioural stuff that has made the difference to me. Briefly, it is sleep restriction to recalibrate your circadian rhythms. Don’t go to bed until 2am and get up at 7. No napping in the day at all. Bed is only for sleep- no reading. If you are sleepless at all In the night, get up for 1/2 hour and then try again. It is horrible at first which is why it is important to have the support of the sleep clinic too, especially as we have health issues to deal with too. I am doing this privately- not cheap but worth it. I have found sleeping tablets work initially but do not change anything, become lees effective and there are always side effects .
I'm going to reflect on all the wonderfu advice you and others have given me today. I may PM you next week for more info on the sleep clinic, thanks for the offer.
Thanks for sharing in more depth what you’ve been through and what you have tried. This speaks to your efforts and that of your medical team to address all of your issues. You are a very determined person who is trying to navigate multiple, complex medical conditions, but I also recognize the toll it is taking on you.
Here’s hoping the SSRI helps on multiple levels, as well as the hydroxychloroquine. We are here for you! Please keep us updated.
Sorry to hear your struggle which I can appreciate, because I am there myself. Since lowering to 5 mg pain and very low mood! Horrible. It is presumed now that I have Fibromyalgia, pain is sharp striking nerve pain, extreme fatigue, very blurred vision. My son and friend have remarked how ill I look, frankly I don’t care…..it’s how we feel that matters! Being housebound is no joke, and think not even being able to sit in the garden affects me. I wish I had the answers for us, like you cannot tolerate the meds suggested….
I have trust in my Rheumatologist but even he is stumped…
Don’t know if I have posted this on here before about OH not sleeping. He had been a shift worker for many years so always got up early. Six months ago he was awake for 14 days without one minute of sleep! He wasn’t even nodding off in front of telly, which I had always known him to do. He said to me one evening when I go to bed I am wide awake with a heavy feeling across my chess, I don’t want to be here anymore like this. That I told him must be told to our doctor who he had never had to visit (he’s 77!)….he agreed they saw him next day, prescribed Mitarzipine 15 mg……knocks him out every night!…..he won’t stop or cut it down, it’s up to him…..but there is always something that will work, keep trying……good luck.
It does puzzle me though why OH suddenly couldn’t sleep!
I was surprised he went to GP but he felt so weird not sleeping. Not going with him, he just told them about not sleeping. Nothing I can notice is different, he’s a man!!….if you get what I mean!
Oh I get what you mean!!!! No, just wondered. It can be a symptom of nasty things like depression, Parkinson's or Alzheimer's so worth watching out for other changes when it is as extreme as that.
Yes I agree I’m alert to him but if I ask any questions he says why do you want to know that!.He’s very physically fit, walks miles, like he did today with sons dogs. Decorating etc when not gardening. Wish I knew his trick to be so healthy, but I do really….genes…parents lived to 90’s very good health till then, not like mine.
Yes luck of the family…..or not, my son says which I agree to a point, different generation different habits, smoking diet etc. We can only do our best, and of course treatments are more advanced now.
Really feel for you. I think it’s so so difficult to know the difference. I’d say that personally I don’t feel particularly good throughout the tapering process. I’m trying at the moment to taper down to 7.5 mg after 7 years. I only taper half mg at a time. I usually repeat the DSNS steps twice sometimes three times so it takes ages to get down. When I reach my goal I stay on that dose for about 6 weeks to see how I settle down. If things settle, all well and good. If they don’t I go back to previous dose. I tend to see what I’m like early morning. If I was constantly in a lot of pain for a couple of days when I got up in the morning then I wouldn’t continue with the taper. I’d perhaps try a couple of weeks later. Also when I first taper on DSNS I don’t feel particularly well at all so I try to do very little around that time. I’ve noticed that when I reach the 7/8 th taper on the DSNS that I start to feel better. Try not to get stressed about it all- I know easy to say but not to do but the stress will make the process more difficult and also may affect your insomnia more. I think Suzy1959 was very successful with her treatment for insomnia although she said it was very hard. Perhaps to concentrate on that, one thing at a time and when that improves start your slow taper.
Best wishes. Also do post when things are not going so well- that’s when you need the support. Xx💐
Thanks so much Jackoh, I appreciate the advice, esp to not worry. Maybe you are on the correct physiological dose already? As we hear on here every day, we are not aiming relentlessly for zero but to find the balance to control inflammation and be mobile and have a meaningful life. I think for me that might possibly be a high dose, but I will try to reduce to lessen the side effects. I can't think going from say 22 to 20 will make much difference but you have to start somewhere. As you say I will monitor how I feel. In the past docotrs have made me push on with reducing and I've ended up being very unwell, resulting in needing even more steroids to get things back under control. It's not like I haven't tried. I'm so glad I came back on here, even though thre are tears running down my face right now I know there are people on here who do get it and it does help. I'm going to do one of my lists I think that I wrote about in a previous post, that helped last time.
I forgot to add too that I believe my level of inflammation has gone down since cutting out all sugar except the occasional honey, fruit, white carbs, very little dairy and doing intermittent fasting. I also try to do a short walk each morning and all of those things over a long period of time I feel has helped. 💐
Yes that's another basic pillar of health I need to get back to. Low carb has worked well for me in in the past but with increased appetite from meds, bad habits creaping back in and I confess the emotional side of eating more potatoes etc as comfort food with the tizzy I'm in, kidding myslef that one day won't matter, but it does. I'm taking on board all the wonderful advice I've had today and am going to come up with a positive action plan
That’s really good to have a plan! Some things I feel we have little control over - say the dose you need at any particular time but we can have a stab at doing some of the peripheral things and that can give a “ good feel” factor that we’re in control or semi control of something! Xx💐
I can't eat carbs, I put on so much weight and my blood sugar levels go crazy. Sadly I have succumbed to more chocolates and potatoes the last few weeks and blame the stress!
Tangocharlie....oh honey! I am so sorry you are going through this. I'm sitting here with tears in my eyes because.it is hell and not right. And I am in the same boat. I felt like I was reading one of my own posts. I too have the confusion over w/d versus flare. And my rheumy pushing fast reduction has actually helped put me.in this position. I probably could be on a lower dose if she could get a grip. But I have been in a push pull over this for months. I too was sick for months before diagnosis so not sure if that does come into play. And I am stuck in 20's. And even 1 mg makes a difference. I am back to 22.5 which before worked really well but not as much this time.
I also can feel when my inflammation is going up. It's strange. And while I have other pain causing conditions my PMR symptoms are pretty specific and not handled with pain meds. The fact that these points of pain are new to me and very different is at least a good thing.
I am about to start leflunomide which I do not want to do but I feel like "just do it if things get bad I can just stop it." I told my rheumy that I was going to up my pred then because it takes weeks for the med to.start really working. She wants me back in a month, will do labs but she wants me to reduce before that time. I might not. I am so angry right now that I am going to really push to add time to a dose that works. I have even thought about going to 25 because the 22.5 dose is not going as well as it had in the past. I am struggling with the pred side effects. My head is huge, my face looks just strange. I have gained weightnwhich I did not need. My feet and ankles are swollen to the point of bigger shoe purchase. I shake and have reached a new level of stupid. I do nothing because if I stand for 5 minutes I get muscle spasms
And the PMR and pred are wreaking havoc with my OA and RA...my hands are swollen and more painful, knees particularly bad. It feels like my joints are loose and muscles etc. more sore.
Yesterday I had to go out for the first time in weeks. I drove about 4 miles and went to pharmacy to get new med and a flu and and a t-dap vax. My brain feels fried. I did ok driving. It was the walking and interacting with human beings that felt hard. So I am no fan of pred. But I am 66.and can't live like this forever. I mean what would have happened if treatment had been handled differently.
I have received so much support here and have learned so much or things could be worse. We have a bit more complication with the w/d symptoms.vs. flare being confusing to identify. Our rheumys have helped to cause the.problem because every time we push the reduction too soon we turn the firehose of inflammation on and then the symptoms loom large. I will look for a new doc but it could happen again. I have no energy to do this..and it will take time here (I moved here a year 1/2 ago and it's hard to get in to docs) so I have to juggle looking with treatment from current doc.
I guess I need to research.docs then call their office and ask "how does the doc feel about.prednisone...I mean on an emotional level....."
So my anger has fueled me some to stand my ground on the pred. I am going to create a symptom notebook and put everything in there. I started one and ended up doing the minimum...which gives some info. But like a crime scene you never know what some small piece of evidence could mean. Lol. Being sick is a.lot of work.
Oh and related to that I moved my pred dose to midnight when I take a pain med dose. I have trained myself to wake up already at that time. It improved my sleep some. Before I was getting up at 3:30...I have slept until 5:00 for 3 nights...woo hoo naked happy dance. Will it continue? Who knows. I hope so because I need the sleep. If you are not taking it during the night like some at 2...it might be worth a try. Like I said it's new.
Please.reach out to me.or others here when you feel sad or angry or fed up. It does help. And keep me posted on how you get on if you want and feel like it. If you don't not a problem. I think it helps to know someone with situations very close to our own.
Gosh this is long...sorry. I hope it makes sense.
Time for coffee. Take good care of yourself. Hang in ...consider yourself hugged.
Thanks so much, so much of this resonates, particularly the anger. I'm going to take myself for a nice walk while there is a gap in the relentless rain, and I will come back to you. You have really helped me today. Maybe we people in the same position need to get a gaggle of rheumies together and force them to listen to us rather than the other way round?
I hope you got fresh air and a good walk. I want to deal with house stuff but can stand for very long without back spasms. I did up my pred dose by1 mg and the spasms that started happening when I was sitting stopped. Lordy. I did pick up the lefludomide but haven't opened it yet. Need to deal with that tomorrow. Anyway just wanted to touch base. Talk with you soon. Here's to improvement for us all! Be well..TC.
oh tangocharlie, I’m in the same boat, only at 5-6 mg; just had conversation about it on here a couple days ago. I think I’m in a flare, then I don’t think I’m in a flare, I hope I’m not in a flare, it’s a guessing game. I tell my husband over and over again, “prednisone isn’t like Tylenol, you can’t just pop a couple mgs and think you’ll feel all better” (his advice always is to increase my dose). Yet as you pointed out, how do you tell what in heck is the cause of the symptoms? I’ve googled my brains out, self diagnosing just about every illness you can think of, an exercise which keeps me awake at night for fear I have them all. When pmr was diagnosed (took forever by the way), I was pretty darn fit and pretty darn happy with myself—we had just bought our winter home in Florida. 6 years later I can tell you there is no way I could have kept up with it—muscles gone, energy gone, wrinkled, graying, wizened, etc. in the hopes that it will help you feel less alone, I can tell you that I am increasing my dose today, will think of you and everyone else who struggles—each of us trying the very best we can. Just know you aren’t alone.
Thanks so much for all your help everybody. I think I'll sleep better tonight for having 'got it all off my chest' and knowing there are so many of you kind people out there. I'm going to reflect on all this and come up with an action plan. I'm already feeling more positive than when I woke up this morning.
I so feel your pain and frustration and I feel the same way about the confusion with steroid withdrawal and flare pains and aches and muscle spasms etc.I have had PMR for 4.5 years and feeling totally despondent at the moment and seem to be getting worse with swollen and painful knee,flare like pains going down the same leg- elsewhere painful hip and mildly painful upper arm- I am on 5 mg and had got to 3 mg- sometimes I wonder if it’s like being a drug addict and to push through each reduction then I get really bad and have to up the dose so totally feel for you
Re your dizziness after a rough boat trip I get that too and it does eventually go away so fingers x for you that it will eventually settle
Thinking if you and take care you are do not alone xxx
My experience is that withdrawal pains feel pretty PMR like but the knees come to play also. It's immediate after dropping and paracetamol doesn't always help. Moving gently does. If this carries on over a week and fades I know I'm good to continue. If it gets worse over the week and can be accompanied by feeling generally unwell I know not to push it.
I think we are all different through.
I'm currently full of covid so keep an eye on myself flare wise too.
Thank you tangocharlie so much for starting this thread. I identify so much with what you and others have said. I too have been away from the forum for months as I felt I had little to contribute, and just felt (and feel) confused about the whole thing, low in mood, old, unfit, etc etc. I’ve tried getting more sleep (two cocodamol and magnesium help), I’ve bought a new jacket and some makeup but I don’t feel any better.
Am currently tapering from 10 to 9.5mg but would love to go back up and feel more energetic. Am dreading Christmas, two daughters are coming to stay with the three grandchildren, plus some friends for hubby’s birthday on 28th. I don’t feel myself at all, keep thinking about booking myself into a Premier Inn and leaving them all to it(although I know I don’t really mean that).
Am wondering whether I’m getting early adrenal symptoms. Went out last night (!) to a concert and in the interval couldn’t keep upright, was swaying and feeling odd, had to hang on to hubby. Felt fine as long as I was moving….
Sorry for the vent and hope you feel better soon 🤗xx
"Am dreading Christmas, two daughters are coming to stay with the three grandchildren, plus some friends for hubby’s birthday on 28th."..
Then delegate, I'm sure your daughters are quite capable of pitching in and doing their bit... they can bring goodies/nibbles/prepared puddings etc - and help with preparing veg, laying the table, clearing up on the day...
Hubby's friends can also contribute...
You've provided the venue, let others do some of the work. Only fair!
Thank you DL 😊 You’re right, they can and will do their bit, and willingly 👍
I’m trying to figure out what’s upsetting me. I guess it’s that feeling of being on the sidelines (on the scrap heap?) ….Just so wish I could do more, and be more active.
Anyway, that’s my lot, I’m lucky to have them all around, I just have to manage to not get too frustrated….thanks again xx
Oh my, do I sympathise…’that feeling of being on the sidelines’.
I’m pacing, resting but not coping with steroid induced insomnia. I took a Zoplicone last night and felt a bit more human today. My GP prescribed a week’s supply for when I feel I need help - but stressed they are addictive and recommended the Sleepstation course.
Christmas brings it’s stresses. We want to be with family and friends but fear our bodies will let us down. It’s the unknowing from each day how we are going to be. So, so, hard not to get frustrated. I really am there with you on that! Take care
thanks for your empathy Bluey. Yes, I do fear that my body will let me down, in fact I know it will, it’s just a question of when🥹 So, like you and others, I want to be with family but can’t rely on it. It’s also the little things, like we’ll probably book a Christmas show for the little ones, which I would love, but I don’t think I can walk from the bus stop to the theatre…..and the kids are too little really to get taxis….so the worry goes on (first world problems, I even feel guilty for worrying about such silly things).
Glad you have a little zopiclone, I’ve found it wonderful but my GPtoo would rightly only give me a weeks supply. I did do a CBT course called Sleepio which was excellent (maybe a bit like Sleepstation?)
When we bought this, hoping that one day we would retire here, we couldn't afford anywhere big enough for the whole family to visit but there are flats, B&B and hotels by the dozen for anyone who doesn't want the very basic accommodation of the holiday flat it was originally. As time went on it mattered less, they never could all come at once since so many of them work in the NHS!
What I think IS important is to have a place that is yours and yours alone when you have a houseful - my bedroom is MINE, I can retreat and lock the door - it has an en-suite
could be adrenals, could be winter, could just be the whole economic stress we’re all under -and yes I understand frustration, but no point in beating yourself up about it..it will pass
Just dowhat you can -and enjoy the company -after all, that’s what it’s all about really .🌸
Yes, there’s a whole lot of general stress around, isn’t there? I will do my best to enjoy Christmas. I guess it doesn’t help that I’ve put my heart and soul into it all my adult life and it’s been effectively cancelled at the last minute every year since 2015 (mum going into a home, me into hospital, daughter having miscarriage, Covid, etc 🥹 So with every year that passes there’s more pressure to try and recapture something of the spirit of family Christmases as they used to be. Personally I don’t feel it’ll ever be the same, but I have to put on a front…..
Similar. This year I've decided to try to create a new type of Christmas. Effort last year to try to return to the before times for Chrismas really didn't work, not helped by the fact that our current place doesn't even have a place where we can put up a proper Christmas tree. Time to let the young ones really take over, move into a new tradition. Let's compare notes after Christmas! 🎄
oh, I’d love to move to a new tradition and let the young ones get on with it….but we’re still the only ones with a big enough place to host things, so we’re a bit stuck.
I wonder what your new traditions will involve? Yes, I’d love to compare notes when the time is right 😊x
I think PMR and aging have both taken big bites out my ambition/ability to prepare meals and buy and wrap gifts! I do not put on a brave energetic front. My family is, I think, quite aware that I no longer aspire to creating the perfect day!
Do you? Do you really? I had a few xmases of that sort - I was in hospital twice, OH had cancer in the summer, surgery in December and insisted on coming home for xmas which really put a damper on it for us, his mother who lived with us had died in the November, and for years we had been away skiing over the school holiday. It had really put me off the whole process altogether and it was a great relief to get back to the being away business which had started when the girls were small.
Both girls and Nat's two were here for Christmas 2019 but it wasn't what you would call a UK traditional celebration - 2 of them are vegan! It was memorable though - so glad as it all turned out. One last family Christmas. Last year I went out on the 25th and caught the train up the valley and went for a walk up there. Then couldn't be bothered to go out for what had become our traditional Christmas Day dinner: pizza in the village as the hotel doesn't open until the 26th.
face time has arrived- take full advantage of you like, when you like. In pajamas by a cozy fire with hot cup of tea or glass of wine… be with you family / friends as you can.
There’s no “rule” it must be a certain day.
You too , must protect yourself from being a Hallmark greeting card/ advert victim!
You are clever and resourceful. It wouldn’t surprise me at all if you get a posse of friends together for a poker game…
We do use messenger for family stuff - covers all the systems we use! I zoom with a few friends. No idea when I last sent a card - certainly well pre-Covid. Ran out of dirt cheap from Tesco cards and I am NOT paying the prices here plus postage to a non-EU country!!!!! Works out about £3 per card!
oh Pro, you have it much harder than me, I think - or hard in a different way - and I’m so sorry for moaning, it was intended as just letting off steam.
You’re right, I don’t have to put on a front, it’s what I choose to do. The reason for that might take pages to dissect on here…..
Anyway I know I’d be happy, if not with a pizza, at least with some smoked salmon and champagne, and a good film…..but I’ve agreed to a family Christmas so that’s what we’ll do. And since starting this post I’ve managed to speak on the phone with eldest daughter, so have got a bit more of a plan going…..feeling better already 😊
Sending you hugs and thanks for your never failing advice and help xx
I wasn't looking for sympathy or to make you feel sorry for moaning - you have to have the moan to set the scene for considering WHY you do what you do when it isn't what you really want or are able to do. One of the things I learned when living in Germany is that all the stuff round about isn't important when you have family or friends around. We didn't do dinner parties - we had ordinary food that didn't need a fuss and keep the hostess in the kitchen missing the important part, spending time together, A few bowls of salads and a platter of meat or a BBQ for the meat meant everyone helped themselves and were responsible for their drinks. We would fetch a load of pizzas, everyone brought something - whatever. And that extended to Christmas - lunch was often a burger or pasta up the mountain and we had a big table at a local restaurant rather than try to create it at the flat. The children loved it, the parests were as relaxed as is possible on a ski holiday!
I’m not sure you can recapture experiences as they once were- that might sound sad-but time changes everything. Whether that be on a personal level -loss of loved ones, your own health - or bigger issues (Covid, the economy, wars).
You just have to make this Christmas (or any other celebration) as good as you can - it will probably be better than you think -and be thankful of the loved ones you do have around you.
100% agree with this DL 😊 I guess it’s trying to get the balance right between the new and the old - I agree that things change and we have to appreciate what we have 💐x
QUICK UPDATE Sorry I haven't had time to go through all your lovely replies and respond. I'm going away for a week now so will sit down and digest it all when I get back. Although I find holidays can be a stress on the body and usuallly cause a flare, no doubt the change will do me good. I think it's possible that some of us long-timers have a similar 'type' of PMR, and it's difficult to treat, and possibly needs different treatment to 'normal' PMR. Thanks again everybody.
Another update. I'm struggling with a bad flare atm. Wiped out by fatigue and brain fog, can't stand still in one place as too stiff, can't raise arms etc etc, struggle to turn over in bed adn get out of it - all the usual things. Could have been brought on by trying to reduce steroids or the holiday or just the cold winter or a combination of several factors. Probably wasn't the best time to try and reduce just before a holiday and now Christams looming but when is a good time? I need to try again before my next rheumie appointment in January but I don't think from experience you should ever try and reduce unless you are stable at the old dose and I'm not.
Meanwhile I will start a new thread for those of us who have had PMR long-term to see if there are any similarities so I can gather information to discuss with my rheumatologist.
I agree, I'm not going to push it. Prabably the opposite, I'm going to have to increase the Pred for a few days to get out of this flare. I'm documenting it all to discuss with my rheumie.
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I’ve just joined!
Prednisolone together with Leflunomide
Any advice welcome
ESR and CRP slightly raised, neck, shoulder and legs a little stiff, back too. How much should I increase Pred by? 
Does pred cure or simply suppress symptoms?
