Hi all, how is everyone? I'm having a bad day only been diagnosed few wks and already feeling sorry for myself, woke up this morning took nearly 2 hrs just to get out of bed and probably another 2 just to start moving after pred of course, every where hurts today, between the pain, headaches, stiffness, raised blood pressure a bit, upset stomach so not eaten much, cant seem to find a comfy position to sit, walking ,standing is hard work. Cant even lift my coffee cup without using both hands, I'm really tired today cause couldn't get comfy to sleep last night so lack of sleep is not helping my mood today, seriously thinking of swapping bedrooms tonight to see if a different bed might help(anything worth a try). It been few wks for me and already I've had enough and I got a long rd ahead of me yet. I really admire all of you that have been living with this horrible disease/illnesses for years and still manage to remain positive especially with all that going on in the world with covid, stay safe everyone xx
Feeling sorry for myself day: Hi all, how is... - PMRGCAuk
Feeling sorry for myself day
Hiya, i hope you get some sleep, difficult on pred. And good luck coming to terms with it all. One day at a time. tc.
What dose of pred are you on? Do you think you have reduced too fast? Do you think some of the pain is PMR pain? I assume the upset stomach is separate.
Only been on pred for 3wks and 15mg since I started on them
Have you ever been pain free? If not either you are on too low a dose or it is not PMR. Try at a higher dose first to see if things improve.
I needed 25mgs for a couple of weeks to begin with to get the 70% /80% relief of symptoms people were telling me about! After that I was able to drop to 20mgs over the next couple of weeks or so and begin a slow taper when ready. You may be like me and need a bigger than normal dose initially to get going. I’d certainly take it to 20mgs as you have so much pain and stiffness at 15mgs.
Just had a quick look at your other posts. Am I right in thinking you have been on pred for just over three weeks? Have you been at 15 mg the whole time? Did you ever feel really well - if not all the pain gone at least 70%? If you didn't ever get that much relief it would indicate you'd need to take a bit more than 15 for a couple of weeks or so. I believe the maximum recommended starting dose for PMR is 25 mg. If by chance you have already started to taper, then I'm afraid you must stop tapering and go to a dose where you are going to feel as good as possible. There is no point taking too little pred and continuing to feel wretched and still have a lot of pain.
Also, by all means get some exercise and fresh air, but also take more rest than perhaps you are used to. Pacing helps a lot especially as you are getting used to living with the double dragon of pred and PMR.
Best wishes. 💐
Yes yr right only been on pred 3 wks, this is the worse I felt since taking them. Generally felt really good well alot better than before I started taking them.
Also anxiety really bad last few days, which I never suffered from before, so thought maybe today is an anxiety related some how
I did have a spell of rather undirected anxiety, at the time I described it as a panicky feeling only there was nothing to feel panicky about and it puzzled me. But it was when I'd been on pred for about six or seven months and was just getting to the stage where the adrenal glands were going to have to start producing cortisol again. Around 7 mg I think. It lasted a few days and then sort of disappeared, at least I stopped noticing it. I don't know if what you are experiencing is related to your pred level. It might be. Try whatever you usually do to relieve stress, you know, the meditation, mindfulness thing, or a hot drink, or a weighted blanket, whatever works for you.
Incidentally I had been a lifelong intermittent insomniac until I started taking one of my calcium doses at bedtime with a small snack (usually a tiny helping of yoghurt or small glass of kefir). Now, even several years later, I hardly ever have a sleepless night.
This is still new to me and will be for a while yet but it a job to know if I feel something different is it a symptoms of pmr,side effects of pred or something totally different that i need to get che ck out before next appointment, omg I'm going to be nervous wreck by the time I get used to this
Tomorrow I'm sure there will be people along who can help. 'Night 😴
No you're not! We've ALL been there and, on the right dose of pred, you'll make it through - just give yourself time and find some way of relaxing.
Hi.yes I am the same I have been on pred since march 2020 and still get very worried at times,doesnt help with everything else going on does it.well take care,and good luck.
I feel so much compassion for you right now... it is very hard to distinguish all the changes in your body from either the disease or the prednisone. I agree with others that an increase in prednisone may help. I also struggled with reoccurring pains and insomnia and began a morning and night routine to help. I start my day in comfy chair wrapped in a heated pad, drink a hot chocolate protein drink with collagen, take all my supplements
(Vitamins d,a,b12...zinc and turmeric.
I take my pred two hours earlier while still in bed, sleep for two hours until it has worked on my stiffness.
At night I bring to bed my heating pad ( infrared heated) lay on it to quiet pains, I have just begun taking 2.5 mgs of my pred an hour before bed. I have found having a routine helps me feel like a part of the journey. Good luck to you.... this forum is a comfort.
Hi there Karewelsh, I hope you have managed to get to sleep so don't see this until later. Couple of questions, since you started your Pred, 15mg, have the pains all but gone, or have you been in this sort of pain for the last three weeks?
Hi Karenwelsh. I can tell how fed up and scared you are right now, and I completely understand why. When I was first diagnosed (approximately 18mths ago) I felt just the same as you. I'd suddenly changed from a healthy, active 61yr old, into what felt like, an old lady. I suffered side effects from the prednisolone and could never be sure whether different (and new) symptoms that would keep emerging, were pred -related or PMR- related. My body seemed to feel different every day and it was incredibly scary. I'd suffer from everything from weak 'jelly' legs & blurry vision, to headaches and palpitations every time I tapered. Thankfully, I found this community, and the advice, support and friendship offered here has carried me through....and continues to do so. Having PMR/GCA can feel like a 'life-sentance at times, but it really isn't. The more you educate yourself about this condition the more you'll realise that there are lots of ways to manage the various symptoms & side effects, and ease their impact on you. Probably 2 of the most important lessons I learnt, were that it's not a race to taper off pred as quickly as possible......do this too quickly and you may eventually be on too low a dose to take care of the inflammation in your body..... and rest, rest, rest! Fatigue is ever present and resting is more important now, than it's ever been. I promise you that you will get to a point where you feel you're managing things more effectively, but it does take a while to understand your condition and discover the things that work for you and will help your individual situation. This does get better, but it's a bumpy ride. However, you've lots of friends here who have gone through (and still are) the same experience that you are right now, and we're all here to support each other and try and reassure each other when things feel a bit 'wobbly'. Today is a bad day for you, but even a bad day only lasts 24hrs! Thinking of you and sending love.
PMR ....On prednisone 2 years. Now off for over 2 years.
I think we can all relate to the initial feeling. I started at 15, but based on everyone here, I realized after 2 weeks it might not be enough. I called my rheumi and asked her if I could go to 20. Yes....that was much better...I think I stayed at 20 for about a month or so before I even attempted a taper. It seems to me you are on too low a dose. Good luck, once you put out the wildfire it will be easier to manage. Don’t let PMR control you, you will learn to control it!
It's always a shock when you find out you have pmr and have never heard if it before. Panic set in with me - fear - you name it and I had it. My Dr put me on 20mgs immediately and within 1day I could go back to bed after sleeping in a chair for three days of excruciating pain. I am just 10wks into pmr but the advice from this forum is how I manage it now. Rest is important but I still don't sleep good. Maybe 4 hours is all at night but it is improving. Even 10 wks in I am still only down to 17.5mgs but I'm happy with that if it's working albeit slow. Side effect are still around but I am learning to cope with them. I do hope you read all that the forum say. They've been there. Done it as you say but it works. Do hope you feel better soon
I just lost my reply to you, by going to find out more about you. I realise that most of what I had to say, has been said very eloquently by others already. I was urging you to seek treatment if depression becomes a lasting , constant, companion, which it can and does and it needs to be treated separately by your GP/medication or at present on-line psychological support ( there is loads at present).I was also suggesting, like PMRPro does, that maybe you are being under treated and your Pred dose is not controlling your pain and stiffness, adequately.
I was also reminding you of the support and care to be found in this community of fellow sufferers. Your replies illustrate this beautifully.
I have my own room at present and have had for some months. I have added little bits and pieces that have made it into a comfy retreat. I don’t want see see medication everywhere or medical letters, so I have bought a little side cabinet to contain them and attractive boxes for the copious medical correspondence and all my unrefrigerated Actemra stuff. Not to mention the pillows and throws. We invested in pale green wooden shutters that I love. I can either shut the world out or control the light and privacy. It gives a very calm atmosphere. Take control of what you can.
You are in the early days of these diseases. There is a period of anger, depression and anxiety. Eventually you do adjust and accept to an extent ( with off days) and find ways of having a relatively normal life - as normal as anyone can in these strange Pandemic days and rotten news.
The priority is to ensure your pain is properly controlled. I don’t think it is. Talk, talk, talk to us, we’ve all been there and are there. We are in this together. It takes me hours to get going some days and I give myself permission, so should you - you’re ill. 🌼
V helpful post, Sheffield Jane including for me as long timer! I would only add keep a diary. It helps to show if there is a pattern to how you feel, plus things change and it's easy to forget what and when. It can also remind you of better days!
What a lovely heartfelt response SheffieldJane....it made me feel good reading it too. I loved the idea of making the bedroom more of a 'retreat' than a 'recovery' room that it can sometimes feel like! My evening meds are now in a pretty little box .....I've set up my oil diffuser (which incidentally I had on last night and I fell asleep approx 10.45pm and slept through till 8.00am!!! Unheard of since PMR!) I've some magazines next to the bed and cosier light bulbs in the bedside lamps. Thankyou.......sometimes it's the simplest things that make the biggest difference. ❤❤
Agree with everything said on here: on the right dose you will have much better relief . Good luck: hugs x
Dear Karen, I rarely post but my heart goes out to you, as I was there when I was first diagnosed - please make sure you are on the correct dose it doesn’t sound like you are to me, when I was diagnosed 10 years ago I had your pain and was fighting taking more steroids, don’t do this, take a dose where you have no pain, you can reduce and you will be pain free, treat steroids as your friend not the enemy, and remember you aren’t alone on this firm, I’m sure PMR pro will give you her well thought out thoughts on where you are going wrong on your dosage - take care - Annie
I was given 15 mg but went to 20 mg and I could walk miles. I recommend a mattress topper (memory foam) as even if my body hurts I am supported and it’s cozy. Best of luck. Everyone has bad days.
Yes, a memory foam topper was a miracle for me. I 100% recommend.
Gosh, that reminds me of when I was debating springing for a sheepskin topper! In the end we moved and when we bought our new bed I overrode hubby and said we'd get a medium mattress this time, not the most firm. Has made all the difference!
My firm mattress w topper is like sleeping on a firm marshmallow.
Hello Karenwelsh. I do so sympathise. Your symptoms mirror mine exactly before I started 15g Pred. 2/3 days later I was 70% pain-free and far more mobile. Many people will tell you they had a similar experience to that. After three weeks and still experiencing the levels of pain and stiffness that you describe absolutely points to the fact that you're not on a high enough dose and inflammation is continuing to build up. You need to be taking at least 5mg more. PLEASE don't struggle along on 15mg. Have you contacted your GP/consultant?
Hi,Really sorry to hear you are feeling so wretched. I guess we have all, or most of us, been there.
From my experience, I would agree with those who suggest you are just not on enough pred. That happened to me, and I was started at 20mg. My GP upped that after three or four days. At the outset, you need enough to clear up all the inflammation before even thinking about tapering
Once the pain starts to be under control, then hopefully many of your other symptoms will subside.
Good luck.
Paddy
If after 3 weeks you are still that bad - you are either not on enough pred (most likely, 15mg is a relatively low starting dose) or it isn't PMR. I wasn't as bad as you describe even without pred. Go back to your doctors and tell them you wish to try at least 20mg.
And what about the headaches you mention? What are they like?
Agree with PMRpro, and others you may be aren't on enough Pred - 15mg doesn't work miracles for everyone, some need more. so you need to talk to doctor and explain to him what you've explained to us.
Anxiety is normal early days, once you get to "know" your illness and begin for feel more in control that will hopefully ease.
But to be honest you aren't doing yourself or your illness any good getting in a stew over things. As I said the other day, if something's worrying you, and you can do something about it (ask questions, speak to GP, protect yourself from Covid etc ) then do it: , if you can't do anything about it (Covid situation nationally etc) then stop worrying!
Please keep asking questions, we are always happy to answer, but you must do your part as well, so listen to the answers and where necessary, act on that advice.
That might sound unsympathetic, it's not, but the sooner you get your head around your illness (and I know that's difficult....more difficult for some than others), the better you will cope with it.
Oh Dear, sounds like your on too low a dose! And the upset stomach try taking you meds with a bow of porridge (full cream mike if possible) as this helps to neutralize the acid in the tummy! I lived on porridge when i first started on steroids. The doctor gave me tablets for the chronic indigestion but they only made it worse! Pls give it a try!
Sorry (full cream milk) 🤭
Hi Karen Welsh, I was diagnosed in February last year and found that my mood was immediately through the floor, my doctor put me on Amotriptololine (not sure that's the right spelling) it's good for reducing pain and when taken at night helps you sleep. Lots of brilliant advice already been given by this wonderful group, mattress topper, music, heat pads, aromatherapy stuff anything that helps you to relax. I hope you feel better soon.
Hi, was interested in your post because before i was supposedly diagnosed with pmr my own doc said try ibuprofen and amiltryptiline. Do you take this as well as pred? thanks.
Hi loosely 3656Yes I take amiltryptiline as well as pred, I was in agony and not sleeping at all. I can't take ibuprofen as I have photosensitive eczema and it causes my skin to break out in huge itchy sores so this she prescribed this combo to help my pain. I started on just 10mg of amiltryptiline but she upped it as I reduced the pred. I am currently on 40mg Amil and 12mg of pred but I saw my rheumatologist just before Christmas as he thinks I have rheumatoid arthritis as well as PRM. My left ankle, hip and feet joints are all showing signs of deteration, which would explain why I have had such a lot of pain. Not feeling great but expecting to see the rheumi soon. Hope that is of use just a big ramble.
thank you. best wishes to you and thanks for replying
Hi Karen
I dont have much to add to the lovely replies other than I personally get marked anxiety when the PMR is not under control. A few of the others have suggested that your dose may not be quite enough to mop up the inflammation and it would be worth speaking to GP.
It's also worth really cutting the carbs down in the diet as that may well help settle the inflammation - it worked for me as did setting an alarm to take the pred at 2am.
It felt to me as though I was losing everything good by cutting carbs but honestly it was worth it. Might be worth a thought.
Hope you get some rest soon ❤
Your post made me want to scream "You need more prednisone!" The symptoms you describe are many of those I had before being diagnosed. No wonder you're feeling anxious and depressed. I hope you have an doctor that understands PMR and will support the need for 20 or 25 mg at least. Sorry if I'm being too blunt.
Hello, sorry to read you're struggling. It does get better once steroids are in your system...only took an hour after my first dose back in Dec 2019, of 15 mg, pain immediately went. Sadly, once I'd reduced and got down to 8mg Giant Cell Arteritis kicked in, so then was instructed to take 40 mg and slowly taper. Currently down to 9 mg for this month and reduce by 1 mg thereafter every month. Unfortunately, had some rotten news this morning. After having a Dexa Scan to find out what my bone health was like, it turns out I'm Osteoporotic.....which means I obviously have Osteoporosis. Menopause and being on steroids has done this....sooner I get off the steroids the better, but must still taper very slowly or I will run into more problems.
Take Care
Anne
Have you read this? You may get some tips for guarding your bone density - good whether or not you're taking bone meds:healthunlocked.com/pmrgcauk...
Hi all thank you for all yr advise,support,suggestions. Still feel awful but definitely not like I did yesterday. I'm hoping it's just me and getting used to all the changes. Have a drs appointment on Tuesday will definitely mention it to her then xx
Hi again Karenwelsh, if it pain as well as anxiety that is causing the real problem, then it may well be that the dose of Pred you are on is not enough. The emergency doctor started mean on 15mg, five days later my own Doc put me on 30mg for a week, then 25mg for a week and I have been tapering down from 20mg since, and generally with very little pain to contend with.
Just an update. Back to normal today well as normal as can be. The last 48 hrs was not good. So could this have been a flare up or does that just happen when reducing?. Will still mention it to dr on Tuesday
If you are starting to feel better on same dose of pred then it seems you just needed to give the dose a little more time. This is one reason we say we have to taper slowly as it's so hard to know whether PMR is rearing its ugly head or whether it's only pred withdrawal. Have you looked at the slow taper programs pinned here? (pinned posts to the right on my laptop) It's good to be stabilised on initial dose for several weeks before tapering at all.
How much had you reduced before it happened? The smaller the steps the less likely is your body will react badly. But it also helps to reduce what you are doing (of all sorts) and have a few rest days the week you are reducing if you do it in one step. But when it improves after a few days it is probably your response to the change in dose.
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