Hello my friends , I have been stuck at this dose for approaching 3 years .
Sometimes going a little higher on sick days and throughout extremely stressful times.
I’ve lost my Mum this year after years of caring , grief is a dreadful experience, the price we pay for love eh !
I only have to drop 0.5mg to 7 mg and feel floored and useless the same day.
Still have to get through the days with ongoing stressful situations .
Emotionally as well as official meetings, phone calls etc ,experiencing stomach problems , UTI’s , feeling flu like.
Flu and Covid vaccines have knocked me about too .
Everything is so much effort, I do have to take more Prednisilone to cope with going anywhere. I’ll take 8mg .
I most definitely do not want to use steroid sparers , do you advise I stay at 7.5 mg until I’m ready ?
I am getting along on fresh air I think, i know the 7.5mg isn’t covering my needs, but don’t want to go higher when I’ve been on them for so many years. Maybe it’s not a case of what I want but what I need.
Unless I should in your opinion. I was previously coasting along nicely at 2.5mg .
The PMR has probably gone now and it’s the Pred , although I have started another autoimmune condition this year. I blame Covid for that one .
GP is useless, scares me actually, I don’t need that at present. His patients are off all steroids in 2 years , I feel sorry for them.
With thanks and appreciation to you all , any advice welcome. x
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Greensleeves
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Hello, it sounds like you have got to a tricky stage of dosing at a tricky time in life to put it mildly. Grief can hollow you out but the world expects you to keep going. At this stage it isn't just the PMR that has to be considered but adrenal function as well. I have put a link for essential information for all those embarking on a sub 10mg journey.
So, around 7.5mg can be a difficult transition period because it is around now that the adrenal glands need to start working. They have up until now been asleep because their role has been taken over by the Pred that has provided way more steroid than the body actually needs. We need a reliable supply of Cortisol to be able to live through stress, illness, physical effort, etc, even just quietly living. Your adrenal glands will only work if the body sees there is a shortfall and that process can get rusty. So 7.5-5mg can be a bit of a no-man’s-land where the dose is still a bit high for the memo to get to the adrenals and too low to give you enough steroid to get through your day, particularly if you have a heavy load of life. If you don't have enough cortisol/Pred you can feel hollowed out, vaguely ill, upset gut, nausea, emotionally fragile and weak physically. Just to survive my days, I had to drop in 0.5mg gradually introduced over about 4-6 weeks until I got to 5mg. Once I got out of this grey area and the dose got low enough my adrenal glands started to work a bit better. During this time I couldn’t do much and life was a struggle as a result. It sounds like you have so much going on that it might be worth staying on 7.5-8mg until you have the resources to reduce. Regards PMR, you wont know if it has gone until you off Pred for a while but for now it is good you are symptom free. Others will comment so sit tight.
Thank you for reaching out , I wasn’t expecting any replies until morning.
It’s selfishly comforting to know others have been through this.
I’d managed to get down to very low doses twice previously using the DS method , but it’s been impossible since 2021 to reduce and function with caring responsibilities and the ebbs and flows of life.
It’s almost like with each restart with Pred ( I’ve had 3 now ) and reduction, it’s twice as hard as before. But I’ve never had such emotional reactions coupled with the physical before.
I think I’ll stay at 7.5 mg and go to 8mg if i have to go out . It’s too much effort to even get dressed at present.
Reducing at the rate you did seems the only way forward when I’m able.
I’ll read the link Snazzy , thanks so much for your advice. Sometimes it’s hard to think straight , we need the advice of those who understand and have lived through it. I’m extremely grateful thank you.
Hello P , yes I completely tapered off pred when I first started PMR, as per GP’s instructions.
I flared badly and had to restart at 30mg , got down to 5mg . Saw rheumatologist , he told me to stay there indefinitely as a maintenance dose . I did for a few years and thought how silly and reduced to 2.5 mg on my own. I had to start all over again after I caught Covid in December 2020 , which is why I’m still at this dose .
I think Covid has a lot to answer for P, I haven’t been the same since.
It hasn’t been great for my immune system which is already a little low . Bloods are okay apart from borderline CKD and slightly elevated cholesterol. I doubt I’ll get a true picture until I can start tapering down very slowly when ready. I’m going to study the links on adrenals and flares .
I’m happy to stay in bed with exhaustion but unfortunately we can’t . If we truly listened to our bodies, sometimes it’s what we need.
Aren’t people lovely , you couldn’t wish for a more helpful knowledgeable super group . I’m extremely thankful and grateful.
SnazzyD has given you link to adrenals...which is what I would have gone for....and to he honest going up and down probably isn't helping them.... it can be a very difficult stage for many people. I know you have gone through a lot this years which has knocked you for six....and obviously has railroaded your PMR.
Normally I would say you have to get through this adrenals stuttering stage so stick with it, but I'm wondering because of everything else you should actually follow the advice for a flare...see link.. and see if that helps. If it does good, if it doesn't then nothing much lost and drop back down to 8mg. Stay there for a couple of months - and then re-evaluate the situation... and once you do start tapering again, choose a very slow taper...as in FAQs
Thank you for your advice and help. This yo-yo ing with the dose isn’t good at , it’s that that’s worrying me but I literally can’t function.
I’m going to read Snazzy's link on the adrenals , and may treat this as a flare as I do feel wretched. I can go back to 8mg if it improves . I’ll read the link DL , thank you so much for your help and advice. I know so many of you have been through this and understand .
I will taper so slowly when I’m ready. We’ve got Christmas to get through yet too . I do wonder about a flare because I’m getting the awful head perspiration. Wouldn’t surprise me.
Thank you DL I’ve got some wonderful advice, always a huge comfort.
I am so sorry for what you are going through, I experienced it myself and it is hard. Forget about tapering for now. You’ve had sound advice. This too will pass. 🌹
Hello Jane , I’m so sorry you’ve been through this heartache. I have to be able to function, you feel much better having advice from the experts in this group , such a comfort when you don’t know where to turn.
When my husband was ill and then died, I had to up my pred considerably to be able to cope. Even 2 years after his death and on Actemra which has got me from nearly 20 to 5mg pred so no PMR connection, I need extra pred for dealing with official paperwork (I just changed my car and it wasn't a simple process as was an import to Italy) or extra strenuous events. Snazzy has explained it all.
Hi PMRPro! Yes, isn’t it awful how stress rears it’s awful head over paperwork? Five days of messing about over Council Tax problems, trigger finger turned up and pain in neck, so upped Pred just 0.25 for a week and have just started feeling fine once more. Only PMR victims know how we live. Crazy world!
I am so sorry PMRpro , I really don’t know how you coped throughout that awful time when you were caring for your husband until he died . I don’t know you’re still managing now.
Having to push yourself on while grieving, dependent upon Pred is virtually unimaginable , a massive shock for your system , both physically and emotionally. I’m sending you big virtual hugs.
You were still here for the members of this group too, throughout .
I know I feel safer coming to this group for help , people who have been through it or who are living it . People who know the horrors with tapering, dealing with pain , understand the condition more than many medics .
I’m not surprised you need extra Pred for anything that causes you any stress either, despite the Actemra.
It’s a big thing importing a vehicle from one Country to another with the paperwork and legalities.
Snazzy’s link is very helpful . Snazzy and DL were both wonderful. You need that when everything feel at a loss .
The adrenals are a minefield, control so much more than most of us know.
You’re doing fantastically well to have tapered down to 5 mg . I wish we had it in the U.K. for longer than 12 months , that’s the only steroid sparer I’d consider. Pred is a godsend and a demon it’s such a relief when you’ve got some direction to follow.
Thank you , I hope all goes smoothly with the vehicle and you can relax, you need some wonderful respite time without stress.
Hi Greensleeves, what a lot of “e”s in your name! I just wanted to say that I found 8mg kept me in a good place with my PMR for four years, taking 3mg at night and 5mg in the morning. This is not the time to challenge your body by limiting the pills that make it work best, there is no finish line to dash for, so try not to add to your stresses by tapering. Best wishes, Chrissie, and sorry for your loss
You’re right to many ee’s . I remember I was wearing a chunky green cardigan when I thought of that name.
Thank you for your helpful advice and support, I took 10 mg last night and will for 5 nights , then drop to 8mg .
I’ve never considered a split dose , I’ll look into that. I take the enteric coated so know it takes around 4 hours. I took 10mg for a day out in August, still felt wretched in the morning so took another 5mg . Later that day I absently walked almost 10,000 steps with my son, I didn’t even feel it ! It was silly, but it felt natural at the time. I paid for it but it was worth it to visit the sunflower fields.
Thank you so much Chrissie , it’s a huge comfort when people like you understand and share your experiences and advice .
Having been struggling with a UTI for the last week I have also raised my daily dose to 10mg and hoping when I am feeling better to get back to 6mg which just about kept me well and active. At 10mg I feel a bit wired, not to mention exasperated at having to increase instead of decrease my dose. This wretched PMR is an unsympathetic life partner!
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