You wake up to find your house on fire. Desperately you run from room to room but there is no way out. When you think all is lost, when you are screaming for help which never comes, a stranger smashes down your door and hauls you to safety in the street. The cool night air relieves your pain. You have no clothes, no shoes, your house still burns. But the stranger has thought of everything. He hands you a bundle of things rescued from the flames, and soon you are ready for your journey, clothed, with even your watch, a hat, and the comforting feel of a fat wallet in your pocket. You turn to thank your saviour but then you see it is not only your house which has burned but the whole city is ablaze. Only the stranger knows a safe way through the conflagration so you are in his hands.
My name, he says, is Methyl/prednis/ol/one but you can call me Pred. I am your friend.
Your dangerous, two-faced, necessary friend.
Soon after you start your escape together he points at your coat pocket and says, let me see your wallet. And because he is strong and imposing and has saved your life you hand it to him. Later he decides he fancies the coat itself, and later still you have to give up your belt, and then, although you need it against chill of winter or heat of sun, your hat. Worse is when he takes your glasses and now the way becomes blurred. You know you are near the outskirts of the city and hope you can shed this acquisitive companion but then you see that even the suburbs, and the countryside, are dotted with small fires. As if to emphasize your need for him a cinder lands at your feet and as the debris underfoot flares up Pred stamps it out. He's with you for the long haul.
As you continue on your way time seems to change its nature. You have to live each moment as it comes, not daring to look too far ahead, afraid of how long this unwanted unplanned journey will be before all the fires are left behind. And every so often Pred asks for another item from you. For a while you limp along with one shoe until he evens you out by taking the other. But what good are shoes without socks, he says. Soon you have nothing left, you are as naked as you were when you were pulled from the fire. But you notice your companion seems less substantial now as though he is fading out of existence and you dare to look ahead.
There is a village nestled beside a lake. You can walk down a hill to it, over a sward of soft, cool, green grass. In the distance is the sea.
I'll leave you now says Pred. Although he is nearly transparent his voice is as strong as ever. Without a hint of irony he says, go rest in that place, get yourself a new suit of clothes, you'll need it. He notices you still have your watch. I'll have that off you, he demands. And with it go all the days and months and years during which he was your thieving guide.
You walk away from him but turn to say goodbye. He did save you, after all. Just before he winks out of your life he says, his voice strong and real, maybe we'll meet again some day.
Long drawn-out Epilogue:
PS Perhaps a final update? Maybe, who knows? Took very last dose of .5 (one half) mg pred on June 9, 2020, having taken about a year to taper from 2 mg.
Well, no. A few weeks after that had to take pred again (12 July, 5 mg). Eventually doctor is telling me my CRP is up. It showed increase in every set of blood tests until it was higher than it had ever been, even pre-diagnosis. I was in complete denial, thinking it a result of osteoarthritis flare-up and an injured knee. Carried on tapering trying to get back to 2 mg. Finally on 9 January, 2021 I took 10 mg and feel human again. I'm writing this on 2 March, and still trying to drop my dose. Still managing at 7.5, but only just. So the story continues but the sequel is no fun at all. I guess it's my Pandemic Project!
PSS On February 1, 2024 I took .5 mg pred, thinking I'd still be taking a similar dose a week later. But I forgot that dose and decided afterwards that perhaps February 1st had been the last, at least for this go round. Writing this on March 21, 2024. Still holding my breath, but so far so good. (A journey of 8.5 years on pred, and long time before that undiagnosed, untreated.) At departure Pred did not leave me entirely bereft!
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HeronNS
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Wow, what can I say?! A truly brilliant characterisation of your (our?) relationship with PMR, and the emotional dichotomies and hazards that come with the management / survival of it via a deceptively powerful drug.
Thank you so much for sharing your inner experiences, this has rung very true for me too.
Wonderful piece of writing, thoroughly enjoyed it. Love these type of posts as makes you realise Pred is not the enemy and there is light at the end of the tunnel. Thank you
It would be super if people would add an incident illuminating something I've left out, or something they'd change to better reflect their own journey.
I'm still thinking it all over - you see, for me it was PMR that stole everything from me. Pred gave most of it back again. I lost all of my mid-50s to PMR, my late 50s and 60s have been immeasurably better.
Yeah, I wasn't sure how to handle that. The fire stole everything, didn't it? But pred is a more subtle thief and the longer you're with him the more he takes. At least this is what I'm finding although he does bring one to a place of safety.
But without pred I had constant pain - pain is a horrible thief. I lost friends because I couldn't join in. Pred hasn't really taken anything away even after over 7 years - it has just brought things back.
Well, I'm not to the end yet - that part of the story is sheer speculation! 🤔 But, yes, as time goes by I feel so much older, I think that's the main thing. I know you say, well you are older now, anyway. Perhaps I was young for my age, and now I'm old for my age. I feel like I've aged ten years in one. But I know what you mean about PMR taking away life. Perhaps I could have written more about that but this was my take on pred. I'll think about it and see if I can come up with a sentence or two for the beginning.
I was walking yesterday and these ideas came into my head, so I more or less composed it as I walked, came in, wrote it down, typed it into my blog then thought maybe the members of this community would enjoy it. ❤
With undiagnosed PMR two years ago I went to England and was able to walk and enjoy everything, and had plenty of energy - somewhat to my surprise, actually, because I'd been worried that pain would slow me down. I've just passed up a daylong excursion to enjoy fall foliage because I know I'm unable to carry on for eight hours. I've got to think pred is ultimately the cause of that, which is a major change for me.
Very Good HeronNS, I just got past the trembling, sweating, crashing blood pressure, tachycardia , and dizziness; and I now find my blood glucose in the pre-diabetes range. The first little side effects were just a warm-up, but the blood sugar issue is the real deal. My friend is a pharmacologist who once worked for Pfizer and he calls Pred the "Devil's Drug". I consider taking to be like making a deal with the devil. The Devil's promise is to take my pain away (most of the time) and the catch is the incredible variety of dangerous side effects.
Dear @HeronRS, you must be a writer, your story was excellent. and so very true. after all the negative comments i have received , i think this was extremely well put. I am overwhelmed at your articulation about steroids. Pred. to be exact.
Very power piece of prose, which I'm sure many can relate to entirely, however, a few of us may think your judgement of our mutual friend is a little harsh.
As PMRPro says, for some, our lives were undeniably taken away from us prior to Mr Prednisolone (I feel I can call him Pred - after all we've been close pals for four and a half years now) arriving.
I was never bed bound like many, but every day, and night, was a struggle. Life was increasing difficult for eighteen months- less and less mobility, excruciating pain in shoulders and head - and then my firestorm was sight loss in right eye.
When I really needed him - like an avenging angel, my friend Pred came along, and with his brute strength of 80mg saved my other eye - WOW what a hero!
We've had a few ups and downs over the years - well what friends don't occasionally fall out, but in all honestly I can say he's given me more than he's taken away! In fact, some things I'd rather not have had, but then a long relationship like ours can't be rosy all the time.
I can't say I'm sorry to see him go away, he's been a pain in the butt at times, and all things come to an end...but I know that if he's needed again, he'll be there..... I just hope I don't need his help again.
He may be a little dangerous, but deep down he does the right thing, and surely that's what matters!
As we're always saying on here - we are all different, so although we may climb the same mountain, we all see a slightly different view on the way! Irrespective of whether that's through mono or bi lenses. 😜🙄
As you say, things like this certainly put our own troubles into perspective. I'm so sorry you have had such a hard time. I hope that you are starting to feel better.
Thank you for this post. The first I read on this site. I chose not to take prednisone because of the resrarch and reviews I read when I first heard the term GCA. By the time I beard GCA I had already gone through the pain of sore temples, jaw pain, and loose teeth and pain chewing, partial loss of sight in right eye, no energy, depression. The pain had gone even though I never took any meds. I was scared but had come to grips with the fact that I may have to live like I was at that time. I took one dose of prednisone and my blood sugar shot up and my blood pressure. Already on meds for both. After much prayer and searching for answers I decided I could live with partial lose of the sight but I would have to take chance and continue to fight high blood pressure and type 2 diabetes and trust the Good Lord with this GCA giant. Don't know if it was the best decision but it was my decision made July 2016. Did ok untill October 2016 and started PMR symptoms. We to my doctor after about 3 weeks. He gave me pain med and gel said I had autheritis in my shoulders and upper arms. Don't know if he is right or not but it was better to accept than PMR. I have regained my sight in right eye . Don't know why or when exactly just know I no longer have what looked like a lace curtain over most of vision. I really would like to know if there are other people out there who refused to take prednisone and are still living and seeing. Sorry for the rambling of this post.
Thank you. Since i wrote that piece I managed to get to 1.5 mg pred, but owing to a doctor encouraging me to carry on with the taper rather too quickly I had a flare, over six months ago, and have only just got back to 3 mg. It was really my fault as I knew better, but on the other hand she didn't renew my prescription at that time. (After that she wrote a prescription for a huge number of tablets so I'll be safe from now on. )
It gave me the opportunity to see just how much pred affected me even at doses below 5 mg, although we are told this is a very safe level. At 2 mg or so my hair was back to normal, I felt better in myself, if you know what I mean. I thought I was beginning to regain my strength and energy. But since the flare I've possibly felt worse than ever. The PMR pain is controlled but everything else is worse. Even my hair is rubbish again. About six months ago we booked a trip, and if I had felt then the way I feel now I don't think I'd ever have considered it. Rather worried about how things will go, as I don't want to waste all that money by being unable to take part fully. Just hoping that when spring comes I'll be closer to normal. It's an art tour in the Netherlands, during tulip season. I'm still looking forward to it, with trepidation.
Oh I hope you get to go! That's a dream trip! I was at 8 mg (I think) last August. Looking forward to Cabo San Lucas (never been) and a long overdue reunion with 3 daughters & Granddaughter. 2 weeks prior I was totally symptom free! Back to Normal! 4 days before we left I was "running up the stairs" at work. So much energy. Gym & exercises were all back to normal. In the afternoon I slipped & did a 'flying face plant'. Knocked the wind out, but escaped (Lucky I didn't break a hip). Got up finished the shift & fine for 2 days. Then it hit me. I went to Mexico but was barely able to get upright after an hour. The waves totally knocked me over (bruised my hip too) but soldiered on. Never finished a drink but mostly I worried my children would see a crippled old lady. And they did! But in many ways it was successful!
Just be careful before you leave. And send pictures! And your diary will probably be amazing. Are you on Facebook?
Thank you. Believe me, I'm being super careful. The last time we had a big trip planned (even bigger - cruise, Australia, New Zealand) I slipped on ice, twisted my knee sideways and sustained a tibial plateau fracture. End of that trip - and loss of a lot of money as we didn't have the insurance we thought we had (thank you, VISA - not). Four years ago now, and I developed PMR symptoms when I returned to work after the break healed, only I didn't know it was PMR for well over a year.... Yes, on FB. Will private message details.
Well, no. A few weeks after that had to take pred again (12 July, 5 mg). Eventually doctor is telling me my CRP is up. It showed increase in every set of blood tests until it was higher than it had ever been, even pre-diagnosis. I was in complete denial, thinking it a result of osteoarthritis flare-up and an injured knee. Carried on tapering trying to get back to 2 mg. Finally on 9 January, 2021 I took 10 mg and feel human again. I'm writing this on 2 March, and still trying to drop my dose. Still managing at 7.5, but only just. So the story continues but the sequel is no fun at all. I guess it's my Pandemic Project!
Loved this, very relatable as are your other posts ... I guess we all have different experiences that inform our opinions, I just wish that there was a ‘powerful friend’ out there who could save us from the fire and thereafter pass that friendship to another who could protect us without us having to give anything in return, too much to ask for? Unrealistic? Maybe in the future new medications will offer us this rare friendship🤞
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What a silly disease! Before you taper your prednisone should you be almost pain free?
