I’m so fed up as I thought I was getting there but I’ve just seen my GP and it’s back to 15mg of Prednisolone per day. I started my journey in October 2016 on 15mg and felt the best for years, with no raised ESR and CRP it wasn’t certain that the upper arm pain was Polymyalgia but within hours the pain had gone. I managed to get down to 4mg without any pain and last December had a Synacthen test and was transferred onto hydrocortisone a month before to get a more accurate result. For over a month I felt quite well but in the last few weeks I have had knee stiffness and upper arm pain then about a week ago the pain went everywhere, my hands were so stiff and painful I could hardly use them, spread to my neck and head thighs my calves just about everywhere. It affects my joints as well as my muscles stiffness and sharp stabbing pains so thought it could be something else but after this evenings visit my GP was almost certain it’s polymyalgia. After a lot of talking he gave me a choice of going back on preds at 15mg for two weeks then try reducing very slowly. I’m in agony can hardly walk even going to the toilet is an epic drama. I feel so upset that I’m back to square one after 3 years of feeling like hell as I don’t feel well on preds. I could have stayed on hydrocortisone maybe but the pain is so bad I think it’s not as powerful and I’m going to get worse. Has anyone else had such an experience with pain returning when switched or advice?
Back to square one. Big flare up. : I’m so fed up... - PMRGCAuk
Back to square one. Big flare up.
When you were switched to hydrocortisone were you put on a dose equivalent to what your pred was at the time of the switch? I understand hydrocortisone can help with the final taper as you head towards zero once PMR is in remission (supposed to make it easier for adrenals to bounce back or something) but it isn't as strong as pred and it really does sound like what happened was a too rapid reduction of the medication your still somewhat active PMR needed to be kept in check. So sorry about this.
I start 15mg tomorrow had my last hydrocortisone at 5.30 tonight. No I was on 5/4mg when I was changed over to hydrocortisone to the Synachen test. As I’m in such pain I think I need a high dose to get things under control. Had bloods and my marker was up to 15 so within the normal range but for me it is quite high. I never had high markers when I was diagnosed 3 + years ago it’s just the reaction of pain free when I took pred with hours that they diagnosed it. I got the results from endocrinologist my Adrenal wasn’t working sufficiently so I needed to stay on it. So all was going well but now this 🥴
So sorry , I'll be thinking of you and can understand how frustrating this is .
Let's just hope that the Pred gets things under control for you again quickly and maybe you will get a smoother taper and full recovery this time around.
Take care and treat yourself this weekend xx
Thank you Blearyeyed I needed that. It just so upsetting when you spend three years of existence thinking that it’s coming to the end then it kicks off. I really struggle feeling well on predisolone but after a little cry I thought well I’ve just got to get on with it. Can’t do much else but rest this weekend but thank you.
I know how it feels to think you getting somewhere then another thing pulls the carpet from under you , so I do feel for you.
I think you allowed to be as grumpy as you like and cry a bit more if you feel like over the weekend , I hope your family help cheer you up and treat you .
You'll get there though xx
I was on hydrocortisone for those four days before the Synacthen test and felt really good. I then went back onto my 2.5mg of pred but must say that I was incredibly fatigued and achy for a few days. I’ve approached my rheumatologist to ask his opinion but he’s sitting on the fence and wants to wait and see what the endocrinologist says. I can understand your upset and frustration. I’ve had PMR for over three years now and still haven’t really accepted it. Like so many on here I feel I was robbed of my good health and active lifestyle and just want it back. So you just have a good rant and a cry. It’s good to let it out!
When I went on the hydrocortisone it was for 1) prep for the Synachen test and 2) things were good in the pain department so my endocrinologist said it’s your choice so I opted for hydrocortisone. It was to support my Adrenal gland function. I felt like a weigh had been lifted being off pred I felt brighter and better in myself taking hydrocortisone but I think it’s not got the power in it as preds does. The GP did keep explaining the equivalent of 20mg hydrocortisone is 5mg in pred but if it’s not working then it doesn’t really matter.
Yes I was on the toilet at the time of my outburst of tears I couldn’t get off and try as I might I just hadn’t got the power in my legs to stand up got job hubby was at hand. Poor man not what you want on a Monday afternoon a weeping wife with her drawers round her ankles. 🤭
Hi Suffolk Lady. I've read through all the replies posted up to about two hours ago, but had to come back to this one to send you a note. I LOVE that you posted the last paragraph! I've been there myself at one point or another in my early years with PMR. I had to giggle (hope you don't mind) at the picture you painted. I can giggle at the thought now, even though I'm holding at 13 mg after six years of PMR. I've had at least 3 flares taking me back to 15 mg each time.
I know it's hard to accept, but acceptance is the key. I talk big, but it probably took me three years to truly accept PMR as part of my life for however long it takes. Don't get me wrong, I too get "fed up" at times, but I sigh and get on with it as best I can. I guess that's the acceptance part. Now, if only I could convince my rheumatologist to accept what PMR means in my case. She's one of those who believe in the 2-year duration for everyone.
You did very well in reducing the first time around and hopefully it will be the same again this time. Be patient and the best of luck to you.
Thank you. I don’t think I have acceptance that’s what’s hit me hard. I’ve been through it and nearly got through a horrible three years just to start over. As you get older it’s more difficult too.
You know all about it though having it that length of time.
Boy this trip is not fun. I am so sorry you are at this point when you got down to 4/5.
I have one extra year on you as I was diagnosed end of 2015. I am staying at 10 for right now. It has been a yo-yo experience for me so I am trying my hardest to not go up again. But the aches and pains are coming on.
Yesterday I was at doctors and I was telling her how weary I am about it all. I said something about you can’t kill yourself because you won’t be able to ask God to forgive you. I was trying to be funny but as usual I am not.
She was quite adamant that I call the psychologist on Monday and get a same day appointment. Geez it is not in my head..... one more thing to do...
Maybe your adrenals will kick back in with all that is going on... what do they say about that. One of my doctors wants me to get that test but I am on too much prednisone for it is my understanding..
Geez I am sorry here I am whining on your post.
I sure hope they get it sorted for you.
In my prayers
Linda
You still are on 10mg with pain that’s sad. I hope you feel some relief soon.
Thank you for you thoughts and prayers it’s appreciated.
I took 15mg initially after having upper arm pain and within 2 hours the pain had gone and I could get them above my head without screaming. Even as low as 5mg the pain wasn’t too bad however I have chronic pain in my back due to Scoliosis and two operations so sometimes it’s difficult to determine what pain is from where. I’m like a duck my heads above water swimming calmly but I’m paddling like fury underneath.
The thing is I am not sure it is Pmr pain I am feeling. Ibuprofen seems to ease my pains. My arms are not locked like in the beginning... so I am doing a wait n see. I would hate to find out it is in remission and I simply woke up old and debilitated one day.... I want off prednisone....
🤪
Tbh I don’t know if I had PMR pain but it was a sudden onset, like woke up one morning with my arms not able to move without screaming out that gave a trigger to my Pain consultant. He suggested a blood test at my doctors but it never showed high markers but my GP put me on 15mg pred it worked instantly so from then on it was classed as diagnosed
Mine went undiagnosed for 1 yr. It started on my left leg then shoulder then to right side. Then I couldn't raise my arms no matter what I did. They only went as high as my elbows. I couldn't turn over in bed without excruciating pain all over. I was on crutches all the time. I found my symptoms on Mayo clinic n begged my doctor for 3 days of prednisone. My first night was like a miracle no pains n I could raise my arms. She finally listened...
I sure hope we all get thru this soon.....
Hello Lin-Oregon. Don't know your age. However, before I was diagnosed back in Dec 2019 I was taking morphine, co-codamol and ibuprofen (not all together) for pain relief, unaware I had PMR. I was told by both GP and finally rheumatologist that the elderly shouldn't take ibuprofen as there is of stroke. I too started on 15 mg daily, but after 2 weeks of no sleep whatsoever I was told to reduce to 10mg. The very first day of taking the 15 mg of pred the pain had gone within an hour. Reducing to 10 mg pain didn't come back except for the odd achy legs, which I can cope with. I received a call the other evening from rheumatologist to say he wants me to start to reduce from 1 Feb 2020 by 1 mg per month. so today I took 9 mg of pred. I'm really keeping my fingers crossed that this is going to work as would hate to be in the same position as many on the Forum where pred has to be bumped up again....only time will tell for me. Reading some of the messages on here I feel so very sorry for you all. No idea this type of Arthritis was so vicious, in fact, never heard of it until diagnosis. Same as everyone else, woke to be unable to get out of bed. I had a terrible right sided pain in my head before diagnosis, with neck and shoulder pain too. I had to pay and go private to get diagnosed as early as possible as knew there was something more wrong than osteoarthritis that my doctor diagnosed. Thank goodness I paid to be seen and tested as it could have lead to GCA had I been left much longer, my one fear having this disease, which Rheumatoid Arthritis (which is another terrible one) doesn't seem to have to worry about. We are all different in how we deal with this particular disease, that's what makes us all unique. However, I do envy those that accept it readily and get on with life as best they can instead of letting this awful disease take over our lives. We are lead into sense state of security when things are going right while on pred, then let down and have to start all over again.
My good wishes to all in so much pain and really hope it's got under control very soon.
I am going to be 69 in March.. I am so glad I am retired I don’t know what I would have done if I kept working.
Please do not be bullied by your doctor to reduce by 1mg per month. It is too much too fast. I reduced successfully over 3years by using the "dead slow and stop" method ( you'll find it somewhere on this site). It is meant to kid your body into not realizing that you've reduced the dose! I showed it to my rheumy specialist who fully agreed with my giving it a go and just insisted that I kept a diary of how it went. My polywotsit left me after roughly 2 years but it took a further 9-12 months to reduce pred slowly and not risk pmr bouncing back. I am totally pain free re pmr now for last 3years. Hope this helps and I wish you well. Big hug x
Morning poppetpain, I appreciate what you've said but I've not been bullied just taken my rheumatologist advice, as I'm just learning about this disease.
Would you mind letting me know exactly how you did it. Hate to keep repeat myself as others will get bored, just like to enlighten you.
Diagnosed in Dec 2019. Started on 15 mg daily. Couldn't sleep so he told me to reduce to 10 mg daily. So, 16 days on 15 mg and 21 days on 10 mg.
Then he told me to reduce by 1 mg per month. So in Oct this year I'll be down to 1 mg. If I don't experience any pain would that mean I'm off them or would I take 1 mg for a period of time ?
He did tell me that if the pain returns to go back on to the mg that I'm stable on. Seeing my GP this Thursday so will discuss this with him too.
I respect all on this Forum for their advice as they've been through it or still going through it. Hate, hate this disease !!
Thanks
Anne
Hi Anne. Maybe bullied was too strong a term but it does sometimes feel that way for some of us at the start of treatment. Ty his is the method I used. Also took note of another post which said that some specialists recommend staying at 10 mg for 12 months before reducing. I did that when getting to 9 showed unwelcome symptoms. Went back to 10 for a year. Feel for you and hope I never go through it again. Mary x
Dead slow and nearly stop reduction plan
PMRpro
PMRproModerator
5 years ago•68 Replies
I have been asked by two or three people on another thread about this reduction. Because of the way this forum works I thought it was simpler to just start a new thread so it is obvious where it is - I've posted it several times already but there is no real way to find it again that I can see. It is long to try to make it understandable - those of you who use word processing will be able to copy and paste it into a file on your computers to read again and again.
"Reducing pred: dead slow and nearly stop"
In an attempt to make this reduction scheme available more simply to the people who request it I am posting it here where it can be found easily. I hope noone minds but I have copied and pasted it what feels like dozens of time!
"A group of us worked out reduction schemes individually that have allowed us to reduce far further than ever before but they are all basically the same - and they were based on a scheme a Swedish gentleman worked out when he simply couldn't get below 3mg without pain. Img at that level is 33%, 1/2mg is 17% - way above the 10% that has been recommended for years. So he used table to see the daily doses and took the new dose on one day, old dose for a few days and then proceeded by repeating that and then reducing the number of days of old dose - until he got to everyday new dose. It worked, he got off pred and has been off pred for at least 3 years (it could be longer). Something similar to mine is being tried by a consultant rheumatologist in the north of England and he too finds it works for every single patient he has given it to. As it did for several ladies beforehand.
My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis.
The Bristol group start new patients with PMR with 6 weeks 15mg, 6 weeks at 12.5mg and then a year at 10mg before continuing the reduction and that achieves a far lower rate of flare (20% instead of 60%) and I suspect their flares then come below 10mg as they then do the 1mg at a time reduction. Just below 10mg is a common dose for people to get stuck at - and I (and others) believe it is because even 10% drops are too much for many patients. These patients are then labelled as "steroid resistant" or told they need methotrexate to help them reduce but we have seen this slow reduction work for those patients too. We believe that methotrexate (MTX) works for patients who have late onset rheumatoid arthritis (LORA) or LORA and PMR together. Very few patients get off pred altogether when taking the MTX - those who do are probably the mis-diagnosed LORA patients - or another arthritis that responds to MTX.
When you are at doses below 5mg it is a good idea to rest at each new dose for a month at least before trying the next reduction. At this point you risk overshooting the dose that is controlling the inflammation so waiting a short time to see if symptoms reappear is helpful. If you just continue there is a possibility that you get to very slightly below the "right dose" and inflammation will start to reappear very slowly. The blood tests will lag even further behind the dose reduction - there must be enough inflammation to increase the proteins being measured for the blood tests to rise.
Contrary to the beliefs held by many doctors it is NOT a race to reduce the pred dose. Doing that will lead to flares, needing to go back to a higher dose and starting again - and the end result is you took MORE pred than if you had reduced more slowly
Thank you for that info. I've copied it PMRpro
If you were to add this information to your profile page it would be available to anyone who requires to know and save you typing it each time. Apologies if you have already done so.
I understood what you meant Poppetpain. I just want to get my doses right. Today I'm feeling discomfort in my hips so wondering if he has in fact been too ambitious with me. After all I've not been on them long, 2 months 3 days, surely not long enough to start to taper.
Like PMRpro has commented, would be a shame to lose you on the Forum that's so clued up on it like yourself that could potentially help others in their journey.
Anne
I am so sorry Suffolklady. I can identify with your feelings completely. I was diagnosed in February 2016. I just finished a two week course of antibiotics, for what my GP diagnosed as a sinus infection. I have got a horrible feeling the dragon has woken up. The dull headache is constant, my legs ache and I’m sleeping for a frightening amount of hours, having been pretty insomniac for years. I really don’t know what to do. I saw my star of a Rheumatologist recently ( before this) and she has left tapering up or down to me ( hoist on my own petard). I see my Endocrinologist soon with a view to a final Synacthen Test. I refused 20 mgs Hydrocortisone as a substitute for 4 mgs of Pred and wonder if I should have looked after my Adrenals with it now. Sorry - me me me.
Hydrocortisone does nothing for PMR pain but it is better for the Adrenal function. I am sorry your whole PMR journey was hell. I had a honeymoon year on 7 mgs for a year, when I led an almost, normal busy life. The early part wasn’t too bad either - euphoric first 6 weeks and stable on 10 mgs. I have been wobbling since 7 mgs. Like you though, I do not relish starting again, and am deeply in denial. I can’t really do anything useful though. You have helped me realise that it is what it is.
As far as your PMR is concerned you went cold turkey from 4 mgs, with your Adrenal function protected by Hydrocortisone. I wonder if you could get away with less than 15 mgs? Sorry for the ramble but I think I am in a similar boat.
Hi SheffieldJane. I know I’m not alone in all this and it’s good to hear from people in the same boat.
I think the reason I was put on hydrocortisone was purely the test and also my PMR pain was bearable although I have constant pain normally but no leg arm or hand pains it had been Luke it for months and you live in hopes that it’s all over...that’s a joke.
Although I was on 5mg I still had my moon face ( still have) and put on a fair bit of weight I was always looking to see if I’d turned into Twiggy overnight no such luck. Afternoon 3+ years on pred I thought as i need Adrenal function support and not pain relief why not give hydrocortisone a try. I think you are spot on it doesn’t do much for PMR that’s why after two months off pred it’s come back.
With this extensive pain that’s gone into places it never went before I thought it might be fibromyalgia but I don’t know much about that. Anyway tomorrow 15mg preds so hopefully I can get off the toilet on my own tomorrow. Dr did say start 20mg pred I nearly fell of my chair. I had 15 before and it was strong enough, I’m supposed to take it for two weeks then see him again and reduce to 12.5. I will see how it goes
Interesting reading your message about the possibility of you having Fibromyalgia and not PMR. A friend of mine has it and her pain is exactly what you have described. Evidently, pred does nothing for Fibro but different drug help my friend. However, she still has days that she's confined to bed due to the pain and feeling very depressed over it....she never complains though, so take my hat off to her. We only understand what others suffer when we get pain ourselves. My sister in-law and neighbour both have RA and in agony a lot of the time.
None of these types of arthritis is nice it's just finding what drug suits us best.
regards
Anne
I suppose the original pain was in my upper arms only. I had that 3 years ago and was diagnosed as having polymyalgia. Without raised markers it was a punt that it was that but as 15mg of pred it disappeared in a few hours. Of course as we know now the CRP and ESR can be normal mine were never raised until now and only to 15 but it’s confusing to understand . Until last week I only had painful arms my knees were getting stiff ( probably arthritis that’s been masked with 16 years on anti inflammatory and 3 years on preds) but this is something else as it’s effected everything especially my hands and wrist. It’s like I can’t move at all. I took the first dose of preds this morning (15mg) it’s eased it but I’m still walking like a duck. I never feel really well but these sorts of things can effect us many ways.
Have you been tested for Rheumatoid Arthritis, as you sound exactly the same as my sister in-law who has it. I suppose it can get quite confusing when other parts of our bodies ache, like wrists and hands. Fibroyalgia has same symptoms too, sadly steroids don't work for that disease.
Since 'Along came Poly' pardon the pun, from the movie Jennifer Aniston was in, I was a happy bunny, these days not so...such a hideous disease and can be so confusing !!
I am guessing that the Doctor has checked for that. I think it shows up on a blood test and I have plenty of those like every couple of months. I have thyroid problems so it’s every two months full bloods the lot.
I did think that it had the symptoms of RA too it crossed my mind. The doctor did say that PMR can affect hands too but from working fingers to ones that I could barely touch without screaming in a few days was pretty frightening. Today after my meds they are a wee bit better. It is a hideous disease and not many people even know what it is. They have heard of fibromyalgia buy not polymyalgia and it is hard to explain to people.
My PMR originally manifested in wrists and hands; hand surgeon wanted to do carpal tunnel surgery but that idea went away when the pain moved into the traditional arms/shoulders/can't raise arms/can't turn over in bed scenario. Bloodwork confirmed PMR. Down from 15 to 8 mg pred now after 14 months; still get occasional twinges in wrists just to remind me it's still there. I get nervous when time for each pred decrease comes around, but so far no drama...however I think I'm just getting into the difficult dosage range. Fingers crossed.
It’s difficult to diagnose when it first comes upon you. I had upper arm pain like you but I had a steroid injection in my back around the same time and it miraculously disappeared within the day. It came back but it gave my doctor a reason to try predisolone and it went in hours. I never had raised markers so it was a gamble. The hand stiffness came later but wasn’t to bad but came back when I change from pred to hydrocortisone. Good luck with the reduction.
Oh dear sounds like we are all having a bad day. I think You should not worry about the extra sleeping. Our bodies need the rest. I would rather sleep more than less. I worry though about your headache. Is it a GCA type?
My doctor ordered me a gel Diclofenac Sodium Topical Gel. The pharmacist told me it is instead of using ibuprofen. He wants to know if it helps. He said others have found relief.
I have just had my first does and can’t tell yet ...to be used 4 times a day so I will see .....🤔
I know, I worry that I have had dull pain on the right side of my head for 4 weeks. The Amoxicillin did nothing and neither do painkillers. I was actually happy to have the sinus infection diagnosis. It’s still there, but you do get head and neck pain with PMR, and I have no jaw claudication. My eyes ache and stream but I thought that was sinus too. I get a completely blocked nose some nights. My recent bloods haven’t shown anything worth contacting me about ( presumably). I am so bored with being like this. I sorry you had a bad day too. I have been sleeping 13 hours, maybe more, this week. I am a teenager without the fun.
I have a sore knee - the diclofenac gel helps that but it is more overuse than PMR I think. I can't bath in the stuff - my PMR "pain" is all over. More like I have flu than a severe pain.
"Hydrocortisone does nothing for PMR pain" - it may not be as good as pred because the duration of action is shorter and so you need more frequent doses but it can be used for PMR. Megams has used it successfully for some time because of problems with pred.
I stand corrected and may well be confronted by the option again when I see my Endocrinologist.
Good luck. Perhaps we could do it beautifully this time, with the diet etc. Let us know how you are getting on. I have completely changed shape - not in a good way but I have been casual in my approach to diet lately, fed up I guess.
Onward.......
So sorry to hear of your woes....how discouraging. It’s the bloody flares that represent the biggest challenge for a lot of us. I’ve only had PMR for 2 years, started at 20mg, lowest I got was one month at 8.5 which ended with a flare. For the last year I’ve struggled to get lower than 9.5, flaring 3 times with each attempt to taper.
Hoping you get some relief at 15. You’ve tapered down before....you can do it again, albeit over an extended period of time.
I can’t help but curse this damn condition at times!
Well I have no choice so have to get on with it. I’ll get there I suppose
I think many of us struggle with flares.We are hopeful it all goes well but the pmr reminds us its not finished with us.We never know what it will do.Tapering feels like iam playing russian roulette.Hit or miss sometimes.Hope you get back on the right track.💜
Thank you.
Dear Suffolk Lady,
What would we do without the support of the wonderful people on this forum? just to hear of others who share similar symptoms, thoughts & feelings!
I think PMR is such an "umbrella" term for a condition that manifests itself in every individual so differently. I also think that diagnosis is key; I have obtained relief by visiting a rheumatologist who has diagnosed that I am dealing with an underlying "inflammatory arthritis" condition. PMR has made its entrance on top of that. Treating the arthritis with Mobic is helping enormously and I can walk quite well most of the time.
Keeping our spirits up when things are not going so well is the challenge. Maintaining a positive attitude is key. I try to go to the pool to do aqua aerobics twice a week, meditate and nurture my Christian faith as much as possible. But I do get down from time to time!
Baby steps - regard each improvement as a step in the right direction and KNOW that you will beat this thing.
We're all here to help you.
I feel for you. I’m about to taper to 4/4.5 alt days. Not sure how I’d cope if I flared. Going back to a high dose and all that involves would be depressing. I’ve got too much to do! Hugs to you - must be awful x
Thank you. Yes it is depressing especially as I was getting to the position of seeing if my Adrenal gland was starting to wake up. Now I’m sending it back to sleep again!
Oh dear, what a struggle we have. I could have written your post myself.... Yesterday because of being flooded with so much pain I have gone back to the beginning like you 15mg.…..after 8 years unbelievable....this is such at sneaky brutal disease at times....even when we follow the "rules" and do everything right it sneaks in, not gently but brutally at times.....I have never been on Hydrocortisone so haven`t experienced that. I would n`t mind if we earned a flare, but it doesn't always work like that. It also makes us feel so low......
We can only hope the 15mg eases things for us.....I`m having an xray on Friday to check nothing else is going on with my back/pelvis, because like you, wondered if it was something else. I hope they research the cause of this beast soon and find a cure....yes, maybe the pred is affecting me!.....we live in hope.....keep us posted..
.I am a Norfolklady not far away!........
I’m only just starting the 15mg today so it’s going to be a ’wait and see’ game. Sorry to hear you are in the same boat in one way it feels easier to stomach knowing I’m not alone. I hope you get relief and that you get a positive outcome to your X-rays. Fingers crossed
This is my second day at 15 mg, certainly not the response I got 8 years ago, on the second day I felt like a duracell bunny!....but it's early days....
Feel weird in the head/blurred vision/balance off kilter, all because of higher dose....can't tolerate meds!
Sitting with a heated cover on my back....anything for some relief......
Keep us posted how it goes....
You know I was exactly the same as you the first time around. I was like a wound up spring I had the energy that I hadn’t had since I was 40. I felt so alive. As I got to 10 it faded and I went to a plod again. The one thing that worries me on 15mg again is not sleeping I remember not being able to sleep and when I did only needed 3 to 4 hours a night a still felt alive the next day.
I have got a muzzy head and I am sweating more than usual but it’s been years since I was on this amount. I too don’t take to meds very well.
Let us know how you are getting on...
Will do, .....radio on low helps me sleep then I'm not thinking too much about I feel if that makes sense....
Yes it does. But when your buzzing it’s hard last time round I could have cleaned the whole house not this time though. Just relaxing watching tv hopefully I will get sleepy soon.
Sorry to read you are feeling so awful SF 🌷🌷🌷
It’s not fair & it’s so demoralising, I do hope you start to feel better soon.
MrsN x
Thank you MrsNails
There really is a good reason that I counsel not building hopes about the end of the journey being in sight until you are there. And I also know you don't want to hear what I am about to write. But it must be said.
It is not uncommon for patients to get off pred and within 6 months, or even much less, the symptoms are back. PMR seems to cycle in activity. You may get to a low dose, even off pred, when the activity is low and then something prods the immune system into action again and the symptoms return.
In the great scheme of all things PMR-related, 3+ years is not long. Only 1 in 3 patients is off pred in 2 years - despite the doctors who insist that PMR only lasts 18 months to 2 years, reality if a bit different. Half of patients will be off by 6 years - the rest of us take longer.
Hydrocortisone is still a corticosteroid and it can manage PMR. But its effect is weaker and it is essential that the dose is equivalent. On top of that the duration of action is far shorter, for effective symptom management you need multiple doses per day, unlike pred. If you are unlucky, then there will be bits of inflammation left over - and they inevitably build up and can lead to a flare - it can happen even on pred. And the activity of the underlying cause of PMR can ramp up for other reasons.
I know how disappointing it is. I have had PMR for more than 15 years. I may have had short periods of remission in the 10 years since I started pred, I certainly hadn't in the previous 5 years, but never long enough to get any lower than 4mg once. I did well at about 8mg for some time but 18 months ago I had to return to 15mg for other symptoms associated with the vasculitis. I got a pacemaker last May and subsequently managed to get to 11mg easily it seemed. But at present I am almost back where I was - even 15mg is barely holding it, 17mg is noticeably better. Nothing would persuade me to allow it to flare that much so I couldn't function, this last 3 weeks has been difficult enough! Methotrexate wasn't an option for me. Now we are looking at where from here.
But we are where we are - and if it is hard to accept then I think we have to ask for help with other approaches to coping mentally. I have said before and will say again: Acceptance is the key to living well with PMR and may be the start to recovery. Fighting, resenting, being angry will only destroy us in the long run and we should try to avoid that if we can.
Thank you for that.....so hard for us all. I would go higher if I could but the side affects get worse, but may have to.....and stay housebound till I can lower.....
I hope you find some ease soon....
Am I bring silly by asking if there is re search into PMR?
Once again thanks for the explanation.....
Not silly at all because for the patient there is little evidence on view. Of course there are studies - but there are fundamental problems which have to be overcome. Until it is clear what causes "it" you can't look for a cure - you have to know where to aim your bullets. I am involved in work to standardise such studies - if all are done with the same criteria they can be compared and mean much more with large numbers. I will be in Colorado Springs in April for the OMERACT meeting as part of the PMR group putting the patient persepctive.
There is a drug that would probably be a game changer - but it is unaffordable for general use PMR at the present time and it probably won't work for all patients: both GCA and PMR have varying underlying causes and it works for just one of them. Your PMR may have a single different cause or it may have more than one thing going on.
And therein lies a very basic problem: money. In some ways it is a bit like space research - the breakthough is likely to come off the back of other work, in the way non-stick pans came from space and the moon 
But the perception that PMR and GCA only affect older patients means there isn't the same drive because they are not part of the economic situation in the same way as young cancer patients. As the retirement age rises and we get through to the people who matter that is isn't only the retired who are affected maybe it will become more mainstream. But even so, relatively speaking the means of studying the significant things are still in their infancy. In the meantime all that is an option is management - and in that we have to take on our responsibilities and also accept some downsides if we want a better QOL. It is all balance.
Thank you in more ways than one for your explanation. Firstly I did ask about research because myself and family and friends often ask "what causes it" and I reply we don't know and until we do, there won't be a cure......which surprised them more than me, because I know it's hugely expensive to research diseases.....example..MND, horrendous and usually fatal disease, but as yet no cure....
Secondly, my husband doesn't really "get it" never questions it, but does what he has to do, .......when you re plied to me I read out your reply to him (we have to pick our moments, and he can see how bad I am now)....he said well with others struggling like yourself, now you know it's not you doing anything wrong....this I think is what some of us struggle with..the major flares even when quite low on pred, myself it returned at 8 ish......but we have to keep positive....and hope for a return of quality of life.....
I hope you have something interesting to report back to us when you go to Colorado Springs.....
Once again thanks for taking the time to explain this to us.....
I've had PMR for a little over 3 years now and live by what I call "PMRpro's mantra" - Acceptance, Quality of Life and lowest effective dose - not rushing to reach zero. After going to war with my rheumy #3 and preaching the Gospel of DSNS to my GP, I control when I reduce or increase my prednisone dosage, with biannual appointments to basically let them know how it's going.
I too occasionally mourn what I used to be, but I'm thankful for prednisone at whatever dose that gives me a decent quality of life. Side effects? You bet but I'll take those over a flare any day. I also remind myself that I'm not fighting cancer, renal failure or other things that are much worse.
Hopefully someday I'll have demon PMR banished forever but I'm living by the mantra - no rushing. Recently I've been doing too much, had tons of stress and have had to go back up on my pred dose again. So be it as long as I can be feeling reasonably well again. Best wishes!
The Doctor did explain that the equivalent of 5mg of predisolone was 20mg in hydrocortisone so I was hoping that it would work as well. I got on okay with the three doses a day I eventually got rid of the strange surging feeling I got in the morning maybe to do with the Adrenal gland trying to work. As PMR medication is Predisolone normally and they say that hydrocortisone is more of a Adrenal supporter maybe that’s why I had a flare up. I don’t know.
I was discharged from the rheumatologist for some reason when she referred me to the Endocrinologist she sent him a letter to say she no longer need to see me. I never heard directly from her but I don’t know whether it’s worth ringing up the department to see. I get more information on the forum than from consultants sometime. I wonder why!
I've wondered how you've been doing on the hydrocortisone. It obviously agreed with you with no bad side effects? I think I saw that someone here used it but also still a low dose of pred to deal with the PMR inflammation. Might have prevented the flare but don't quote me, I can't remember who it was. I'm sure PMRpro might put me right? You have reminded me of my awful hand issues which prompted me to increase to the 5mg as they were so bad I could barely use them for much. It's so complex at times we don't know where we are. Are you to stay on the hydrocortisone also? Sorry you have to do this, it's very disappointing for you. You are not alone. It's hard to know what to be doing at times. Let us know how you feel in the coming days with the pred, if it's helping.
Yes I actually felt better on hydrocortisone but saying that I was only on it for a couple of months before the flareup. Had this not have happened I think I would’ve been better taking it than prednisolone. My doctor never gave me the option of taking prednisolone and hydrocortisone it was an either or situation.I will let you know how I get on. Steph
Yes do. All the best.
So much good advice and support, there is little I can add. It does help knowing that we are not alone and during the difficult phases there are people who understand.
All best wishes to you and the strength to get through this.
Thank you scats.
Oh dear Suffolklady, I am so sorry to hear about your flare. You are entitled to weep, feel disappointed, even angry, and I have recently felt those feelings too. I guess for me, I am still coming to terms with the idea that I can’t just beat this thing, in the way I always overcome problems. I have learnt so much from the knowledge bank on this forum, but it still just cuts you down when you flare. We think we have things under control, can see the end ... and then something pulls the rug. I hope you feel better soon, take good care and be gentle with yourself. It’s easy said, and because this is such a “silent” disease, no one really sees your pain and disappointment (except those with whom you share). Sending big hugs from Downunder xx
Thank you LemonZest11. I am so grateful to this forum it is easy to wallow in self pity when you have a shock like a unexpected flareup. As you said it is a silent disease and unless you are experiencing pain yourself nobody can really understand and think taking a painkiller will do the trick but as we all know it doesn’t.
I will rest up this week at least as I have a coccyx injection on the 10th so I hope I’m more mobile to get on the operating table. If it’s not one thing it’s another.Hugs back Steph
If the professionals ie rheumatologists would stop suggesting that it goes after two years and warned that there would be flares and set backs along the way then we would all probably cope better with this condition. They get so hung up on steroid use and trying to get us off it. After more than three years I haven’t developed osteoporosis, glaucoma, cataracts or any other evils. The weight I put on has been lost and I still manage to work with only the occasional day off when it is too uncomfortable. The rheumatologists seem to be so out of touch with the realities of this hideous condition! All we can hope for is that research provides some answers to autoimmune conditions and in the meantime keep taking the tablets!
Hear hear!
So sorry to hear of your setback ! At 4mg, I don't have what I call real pain, but leg stiffness with discomfit and very tired in afternoon. I've been on 4mg for over a month and would like to go to 3.5mg, but am kind of afraid to do it.
You are doing great I felt tired on 5mg but then I suddenly felt better as the months went on and not so tired on 4mg. Good luck with what ever you do.
Thanks so much for the encouragement. To-day the weather was super, so my daughter and I went downtown to "do" the art galleries, and while doing so had a glass of wine at the wine and olive oil store (very elegant) It was a lot of fun. I rested for a while when I got home then made chicken salad and boiled a couple of eggs for sandwiches this coming week. I was surprised that I felt better at end of day than I have for quite a time. I suppose keeping both mind and body active helps. 
So sorry that you’re going through this but as I read this thread so many seem to have had to be going back to the beginning. I think “rolling” with it is the best option but sometimes that defeats us temporarily. I’m sort of on 11 mg after 5 years but I’m not holding my breath. Quality of life is the most important thing. Do hope you’ll feel better soon.
Thank you.
Thanks for sharing this, I am only on my second year of PMR and your post is a sullen reminder of what could lay ahead for us all.
It's pure luck if the PMR doesn't flare again at some point.
Good luck to you and all the others who replied.
Thank you Alebeau. You might be one of the lucky one.
You’re not back at square one! ( I found It the same way , so frustrating and depleting,). BUT. You have much more knowledge now and coping skills. and you’ve learned about your body and your disease and how to be compassionate. This is a new you, and you made a new friend later on in life called prednisone. Good luck to you it will improve! ( starts with the attitude though as well✔️).
I’m afraid knowledge is not much consolation when you feel so ill throughout the process which I have the last three years. It’s not always the case in everybody that one can cope with the consequences of the illness plus putting a drug into your body that might not suit you is extra stress. I can honestly say that amongst other problems this has really taken a toll on me so going back to where I was over three years ago with worse symptoms is not something I can get my head around at the moment. Predisolone was an option to deal with this illness but I will never consider it a friend I hate how it made me feel and it’s consequences. It’s not all about pain, it’s something I’ve have since a child, it’s about how you feel on a day to day basis and whether you can live a relatively for filling life. Hats of to those of you that make the best of the way you are I’ve struggles throughout this. Day two of 15mg of prednisolone and I still feel like hell although pains a wee bit better but I still have stabbing pains, sweating, itching like crazy and weak as a kitten so I’m not in a good place. Thank you for your positivity I will try.
Hi Suffolk lady. I too live in Suffolk. (Pmr/gca for over 6 years. )And, like you I too am in terrible pain. Crawling up the stairs not able to get up off the toilet etc. I'm having a synacten test on Friday to see if my adrenal glands have packed up, so I was very interested to read about yours, and subsequent members experiences with hydrocortisone, as all the information I can get is very helpful. (I had a full blown adrenal crisis and was unconscious for about 5 hours, the paramedics gave me a hydrocortisone injection which brought me round some hours later. ) Thank you for sharing your experience and I wish you well on this unwelcomed PMR journey .
Hi Annie Marie, I’m sorry to hear that you too are going through the same thing. I don’t have an appointment with my endocrinologist until March but unfortunately the whole thing is now futile as he arranged the change from one drug to the other to get the best Synachen test results, I had this in December. The month pre the test I felt quite good and even the tiredness seemed to be fading. I haven’t seen the endocrinologist but got a letter to say my Adrenal gland still needs psupport from the hydrocortisone but everything was looking positive. Of course that’s all gone by the board now as I’m back on a higher dose of pred so the test was a waste of time. Good luck with the test on Friday hope you get your self sorted soon. Steph
Can totally sympathise. So sorry to hear this. Yes have a good rant and cry - coming to terms with the disappointment of your situation is so hard. I've been on pred 3.5 yrs too and having been on 5 mg and going down this last year I'm now having problems again and havng to increase. Not sure if all PMR - never had such exhaustion and fatigue and lowness before so been to doctors to have a load of stuff checked and then after that will investigate synacthen test route too. Either that or I've been taking too much stress in my life. I have been pushing myself so now having to work it all through. Having a good cry with you!
Sorry to hear you are struggling too. The trouble with a set back is it brings everything to a halt. I only ever had upper body pain it never affected my hips thighs or legs, pred must have given my knees a boost as well because on reduction I noticed a few twinges that’s the joys of getting older and arthritis. The last few weeks of pain especially this last week I’ve virtually become a couch potato and with ALL over pain from the flare my legs are so weak it’s going to be a job to get stronger. I too had extensive test but nothing showed up. Since this flare I am very itchy, sore to the touch and my skin keeps pricking in a nervy irritating way. Driving me mad! This might be something new I don’t know. Let’s hope the doctor can sort you out, take care. Steph
so Sorry to hear this Steph. Bless you. I hope and pray that the flare soon recedes and you get some equilibrium back and can start to live life again. You will get though it I’m sure. Itchiness sounds horrid. Not come across that before? What tests did you have? Take care and hope the higher dose soon has you out of pain.
I’m sure it will at a price. My life pretty simple anyway but it will be nice to have normality. I don’t know where the itching comes from it might be a coincident it all started around the same time. I know it’s driving me crazy feels like prickly heat, perhaps it’s the body heat I’m feeling at the moment. I’m soo hot all the time. Only had blood tests but a whole range my doctor is good that way. Don’t get yourself to stressed I’m sure that won’t do you any good. Take care.
Hi there I am not sure if i am on the right place on this forum as i just joined this am. Are u the lady that has PMR? If so i do too and perhaps we could share some tips Molefosey
You have arrived in the PMR and GCA forum - almost everyone here has or had had one or the other and there are hundreds of us around! This actually an old thread so a lot of people may not see your reply but that doesn't really matter - some of us see everything.
If you go to the PMRGCAuk Home page (click on My hub at the top of the page and choose PMRGCAuk) you will find a list of previous posts - there is a whole load which I have put up in the last few days with very general articles about PMR and GCA to read - or go to my profile page to find them (to see someone's profile page just click on their avatar or name).
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