Firstly I just want to say thank you to all contributors to this forum, I don’t post often but follow everyday and learn so much.
Pmr dx 6 months ago. Started on pred 15mg, then 12.5mg, then 10 all successfully, from 10mg doing dsns tapper, currently from 9 to 8.5. Almost at end of this tapper but have some niggles that are not going away, I usually get them when I start a tapper but I feel this week my arms have become really heavy and achy, I am not waking up with stiffness. Also went back to work on a phased return 4 weeks ago after 3 months off after having foot op. I was doing so well, especially when off, the rest really helped me.
I’m thinking I should go back to 9mg for a while and try again in a month or so, wonder what you would do? All advice greatly appreciated. I don’t have good GP support so apart from this forum feel very alone. Friends and colleagues don’t understand, a very close fiend said to me “are you sure it’s not all in your head” !!
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Go back to 10 mg and then stay there for at least a month.
You have gone back to work and even though it is a phased return............your style of life after 3 months off and so early down the line with PMR is probably causing your body not to know what has hit it.
Get that inflammation under control again and then stay there until you the 'phased in' is over...........then wait a couple of weeks and drop by 1mg at a time using DSNS or one of the other plans on this site. In Bristol the Consultant keeps his patients on 10mg for a year. Then slowly drops.
Remember this is not a race and pred is not cure, there is no cure..........pred is to enable you to live as pain free as possible and keep the inflammation under control.
The last thing you want is to start yo-yoing..........steady as you go please.
Thank you. I know your right but feels such a backwards step after last 3 months of tappering, but I don’t like feeling like this, my memory is awful and today I can’t stop crying, and that’s because my body has reminded me I have pmr and I don’t like it! Hey ho there are worst things in life I know.
Good!! It isn't going backwwards - it is adjusting to circumstances. To be at 10mg in 3 months is darned good going - as jinasc says, one top group wrote a paper about tapering. Their version, keeping patients at 10mg for a year, reduces the flare rate from 3 in 5 to 1 in 5. Which must say something
Well, with friends like that who needs enemies??? This illness certainly does help us to know who is a real friend and who isn't. I know it seems like a backward step to increase the steroids but you need what you need and no amount of willpower will change that, I have learnt to my cost!
its like going home from hospital where one feels like all is quite easy, only to find that being at home is quite a lot more tiring. I’d say going back to work from a home environment is the same sort of thing. Perhaps acclimatise at the dose you were ok on.
Living alone is hard at certain times in our life. Please don't feel so alone, everyone on here will help.
Just post anytime and that means the middle of the night, as members post from different time zones and someone is always around.
A setback so early does knock your confidence, but then it does to so many of us.
I got down from 60mg to 20mg in 8 months and then had to go back up and start all over again and nothing was more upsetting. At that time this forum did not exist and neither did the charity or actual support groups. I felt so alone, even though I had family and friends, but none of them understood because I looked well and some of them just nagged me to lose weight. Then I found Patient info and 4 other ladies.
Result, a national charity, real support groups and finally this forum.
If you live anywhere near a support group, I urge you to join, you will find very friendly people who will make you very welcome.
Here is the link to where you can find they are located.
Thank you. I don’t know how you managed, without this group I wouldn’t know anything about pmr.
The group nearest me ceased before I was able to attend and I have been waiting to hear about a new group and interestingly I have had an email today of a new one starting in September in another area, but near enough to me. I will definitely be joining that. 👍🏽🙂
This Firum is also like having a group with you in your own living room!!
A group of Faraway Friends , who completely understand what you are talking about , and know that sometimes you don't need to ask practical questions but just need to vent about how the PMR is making you feel to an understanding audience that doesn't judge.
It's great and beneficial if you can find a face to face group near you , and I highly recommend anyone doing so , but sometimes , we all know that when we are at our worst we can't manage to get out to see people , and that is the time taking a seat in the online social group on HU is the most valuable of all.
Take care , and above all remember you will never be alone in this again xx
Your typo “ fiend” was an appropriate Freudian slip.
It’s work that’s the trouble. You are not able to have the stress free rest that this condition demands. I really don’t know how you workers manage!i I would be tempted to return to 10 mgs and stay there for a nice long time. You can’t beat this disease with determination and willpower. You will end up with a full blown flare and have to take more time off. Is there someone in HR that you can have a planned discussion with, about the nature of this illness and the design of your job? Sometimes a few adjustments to your duties and or hours can make the difference between losing a valued member of staff and retaining a committed colleague during a time of difficulty. Your organisation has a duty of care towards you too.
I wish I didn’t have to work. When I was off I felt well, kept up to date with everything, rested when I needed and met friends for walks & coffee.
I have had an assessment with occupational health at work, I can reduce my hours if I choose to, I was hoping I wouldn’t need too, I currently work 27 hours over 3 days. I can reduce on a temporary basis for 3 months to see if I manage better both at work and financially which I think I will have to do, at least I can try it and see before giving up some hours.
I went through a 5 year period of not being well, being assessed etc with fibromylgia and was in my 40s. I was so worried I would lose my home I pushed myself into early retirement on ill health. My working hours were ridiculous and the funny thing is part time was worse ...more work at the "coal front" for half the money so I stayed full time. This entailed 60plus hours a week working from office and home. 27hrs may be ok. Can you sit the hours as you want or are you required to do so many days?
That's good then. Finger crossed it goes ok. It will be a culture shock. After mths off prior to and after back surgery I was in tears the first week. Forewarned is forearmed!
Niggles that stay are a warning that inflammation and pred are out of balance. You need to address that right away, so niggles don't grow into a flare that sends you back to the house.
Up your pred and kill the niggles, and when you resume your taper, cut only 0.5 mg at a time. Let it sit for a few weeks and see how it goes. Only move on if you're comfortable that you're past any withdrawal and aren't growing a new set of niggles. That usually takes 3-4 weeks.
People who don't "get it" really are trying to help. What they want for you is to be well. They're hoping that something simple will help. Here's what you tell them: "I have an autoimmune condition that requires medication, rest, a good diet and constant monitoring. I've been told by experts it is a chronic illness that on average lasts up to 6 years. I'm doing what I have to do to treat the condition. There's no cure. I think you want to help me get through this, so how about (helping me fold laundry, change the sheets, wash the windows, vacuum/mop the floors, grocery shopping...). Every little bit helps me. I'll make the coffee/tea, turn on the music and we'll have a few laughs. Thanks, I knew you were my good friend. I will get better, and then I'll be able to return your help and support."
Change your mind about what your goal is. The goal is not to get off pred. The goal is to find the right level of pred that controls your inflammation and that gives you the ability to live your life. That's how you get the "blue ribbon". Sometimes you'll have to go up a bit to handle a difficult day or a difficult week. Pay attention to what your body is saying, and heed the warnings. Going up a half mg or a mg for a couple of days to handle a rise in activity or stress and head off longer-term effects works. You'll suffer less and, in the long run, wind up taking less pred.
One I was at 10mg I have only reduce 0.5mg on dsns tapper.
Can I copy and paste that please?! I find it hard to explain to people what pmr actually is, I probably don’t explain it well and of course I “always look so well”. 😂😤
Copy and paste away. Feel free to quote or adapt to your own voice.
People really do want to help, even if they can't devote large blocks of time. Asking if they'll run an errand while they're out, or lend an hour to help you get something done you just can't manage right now, gives them a chance to feel good helping you. Don't be selfish. Tell them what you need, and they'll respond as best they can. Really, people are great. Be gracious. Be flexible. Be grateful. Make it fun for them and fun for you.
I am in my 15th month of PMR and have been through the frustration and pain of a fast taper and flare up. However, I have never been symptom free, but at least 80% better...which has always included a few “niggles.” But I have assumed that is common. I haven’t considered them a flare up. Are very many of you symptom free?
I'm about 3.5 years in. I have some stiffness/aches in my biceps in the morning, but nothing compared to what ti was. Most days, after moving about for less than an hour, I'm symptom free. Some days - as when big storms are moving in or out, or I've had stressful day before, it takes a bit longer to ease. Being in one position too long, not getting up out of my chair every half hour at the office, makes me stiff, too. But it passes quickly.
Recently, I was riding the ferry and noticed that I was crossing my legs, which I hadn't been able to so for some time. And I find myself forgetting sometimes that there's anything wrong with me at all (and get a bit of a "reminder" if I move too fast or stretch too far.)
When I think of where I was compared to where I am now, I am grateful for the progress I've made. I just hope it keeps going.
Thank you, I’m finding my comfortable place and trying to settle in without trying to rush to the finish. Once I had it all mapped out, how I would be off Pred within 17 months. Ha ha, my sanity is more important, and I’m fortunate the side effects have been minimal.
Difficult to say - but what you achieve at the start dose is a good guide and probably a lot manage 80% better. Far fewer manage pain-free. In terms of PMR I probably am pain-free - but I take a form of pred that works to reduce morning problems so that is sorted and the antiinflammatory effect of pred lasts over 24 hours for me. That makes a difference too.
It is really hard when you live alone and have the bills to pay. It's never going backwards...or forwards for that matter. At the beginning it's about learning your limitations, adjusting your pred in line with symptoms and patting yourself on the back when you get through another day and have enjoyed something you had or did.
I got down to 8mg and went back to 14-15mg. I was just so pleased not to feel as cruddy as I did that I couldn't really care less I had to increase. PMR will probably never be a friend but don't make it your enemy....it's just an irritating travelling companion that likes to sap you of energy and give you pain if you don't feed it pred....
All in your head! My sympathy. How did you keep your patience! Yes they put you on steroids for nothing. We've probably all gone "backwards" with our tapering. Disappointing, but don't panic. Going back to work is tough. It will take time to adjust. Let us know how you go. I hope you start to feel a bit better.
Yes, that friendly friend who judges by appearances alone! Steroids smooth those wrinkles, one of the nicer side effects 😀. You’ll get good advice here but you’re not racing to the finishing line. You’re adjusting dosage to control symptoms while PMR chugs and chortles in the background. I’d return to 9mgs and stay there for a few weeks if symptoms are controlled (70% or thereabouts relief) and thereafter taper slowly and carefully. Good luck!
Morning, I too wonder if symptoms are pmr or pred reduction so a great question. I truly empathize with the folks not understanding...since there are no outward signs its hard for them to understand. plus this is not a well known disease. But you have a bunch of understanding friends here. 😸 be encouraged.
I was diagnosed about the same time. January 16 had my first dose of 20mg. prednisone. I am now on 9 mg and reducing 1mg every two weeks. My Rheumatologist office called yesterday, my blood test is good. My CRP is normal. I feel pretty good. I rest when tired. Go to bed at 9pm. Trying to eliminate stress. I walk funny but hope to start walking more to build muscle.
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