Morning all
I am determined to come off the dreaded pred. and now down to 1mg, hurrah! Although I hurt sometimes, it is not as it was and I can live with it. Are there any tips for alternatives for inflammation? Someone said CBD oil so I bought some Cannery and not sure if it does anything, possibly placebo effect? I take tumeric and have reasonably good diet. Thank you in advance.
Hello there. You asked this very same question when you started on this journey. If it is inflammation from PMR (it is only a year down the line) then the answer is the same no unfortunately. It is difficult to know if your pains are likely to be still PMR or not as there isn’t much detail of type, region or timing to go on in your post. You have done well to get down to 1mg in a year so do be wary of ‘putting up’ with pain One can get into a mess trying to push through, desperately trying not to up the Pred, only to end up on a higher dose eventually.
In the words of the prophet - nothing has changed, Inflammation due to PMR is only successfully managed with pred and other things are usually just a waste of your money, putting it in other people's pockets.
If you are actually at a dose that is slightly too low for the disease activity remaining - and it can be VERY low - then if you stop the pred altogether it will, over time, build up again like a dripping that fills a bucket and eventually overflows. You may end up back where you started and be faced with the alternatives of going back on a higher dose of pred or putting up with the pain and stiffness.
1mg that is successfully managing the inflammation is a very low dose - and it is one most of us would be delighted to be on. For most of us it is not "dreaded pred", it has given us our lives back.
Thank you and I have taken note, tho you sound just like my husband 😳😳I am waiting a knee op so need to be off or very low dose.
You will need to be mobile to do the post-op rhab - and if the PMR comes back, you will struggle. There are loads on the forum who have had hip and knee replacements while on a higher dose of pred than that.
Who has said you need to be off Pred or at a very low dose regarding op?
If you are on 1mg even an orthopaedic surgeon should be happy with that. Mine who wanted me at zero agreed on 5mg in the end.
My cataract surgeon asked for me to be on a maximum of 7.5 mgs for a week before. Good luck.
With all due respect [having had both] a cataract operation is not the same as knee replacement surgery… 😊
I am sure that is right, DL. I hope Motida gets her cataract op' - terrific results in my case.
I had my cataract operation cancelled for the fourth time yesterday by the NHS in London, and have been on 7.5mg for 31 days.
I decided to drop to 7 m.g. today and get on with life and try and get over the disappointment! They had warned me that the blurred vision in my long sight would not go away necessarily because it was probably due to Pred. I can't read bus numbers or road or tube signs which is a bit scary at times. I take photos of them on my phone though to enlarge.
I am interested to know why your surgeon wanted you on at least 7.5mg - was it because you might have a flare up with the anxiety?
Thanks in advance for any tips.
Orthopaedic surgeons are always worried about infection as they are cutting right down to the bone with a knee replacement. Steroids compromise our immune system and so the possibility of infection could be higher on steroids. My orthopaedic surgeon was totally paranoid about infection.
He mainly felt that there was a greater risk through 'pred increasing pressure in the eye' if the dose was higher than 7.5 mgs. Did they refuse to operate, or was it the NHS cancelling it for their own reasons? Sorry to hear in any case. Nb: I had another (unrelated) procedure recently and they increased my pred to 30 mgs for 3 days afterwards ! I hope you get yours rescheduled and completed very soon. In any case, watch out for trips and falls, obviously.
Hi JAC1947,
Firstly, I'm not going to advise regarding your actual pred dose as others with far more knowledge than myself have already addressed that.
I would say though, that many of us before you have asked that very same question regarding 'alternative options' for reducing inflammation and believe me, if any had ever actually worked for anyone, none of us would still be taking steroids.
None of us would ever choose to be on them but as Pro said...you have to regard them as your ally in the fight to manage PMR effectively, and not your enemy.... particularly if you're on such a low dose. Not easy I know though.
Like yourself, we're all hoping that an 'alternative' effective treatment will one day emerge, but until then,
"Don't worry & don't hurry,
Use your head & take the Pred!" 😄
well done you! Im currently going down to 500mg like you determined to get off Pred. Exercise when you can a gentle walk etc, swimming, whatever you like. diet cut down on surgary foods I eat Med type diet, all worked for me, and keep positive. You can do this! 👍👍
I used to take CBD to help with steroid induced insomnia but then read somewhere that CBD interferes with Pred so I stopped taking it. I'm on 10mg. Maybe on your low dose it won't hurt to try it. But also, as others more knowledgable than I will say, your dose may be too low if you are experiencing pain.
You had already many replies, so mine is just one more. Last week I had my annual control appointment with my excellent rheumy. She was very pleased with my good condition (lots of hiking, cycling, pilates and indoorrowing) . I am after 2 years of slowly coming down from 20 mg/day already 2 years on 1 mg/day. And so she very enthousiastically prescribed me another year of 1mg/day, because why should we change a winning team of 1 mg prednisolone and 4mg DHEA (prescribed by my GP).
Hi all,
like many others on this site, I have been too on the holy steroids, that have made my life liveable and often joyful. I don t know what I would have done without the holy steroids. Yes, PMR stinks and you won t wish it to anybody!
From may 2017 when I first “noticed “ the PMR I have been as low down as 1 mg, prednison, then for a long time 2.5 mg, then another flare came along now I am managing on 5 mg. Hoping to crawl back to 3.5.
Each time aiming for “ being cured”. Yeah right, some of us might others not .
I understand that now deeply and it is not “ my fault” whatever happens.
Yesterday I had this “ realisation” that some of us might have had too: I will now accept PMR in all its peculiar and unpredictable ways and stop expecting/ hoping it might go one day. It might, but it might not, as alll the stories on the forum indicate. I will go with however its presents and reclaim my life (thanks to the steroids and the guidance of the forum) with or without PMR.
Yes, side effects plenty, known or unknown, but I will live today and hopefully? Manage the side effects. ( like osteoporosis etc) Take charge of the illness, take charge of your life.
So I have just bought myself an electric bike so I can bike without feeling that I have 7 wetsuits on! Whoowh what a difference.
This whole proces has taken me 7 years, so far. Yes, I am a bit slow! But many others, also on this forum have gone through a hell of a lot worse than me.
Much love and aroha for all in your journey too. We arre on it together.
I did exactly the same thing and thought I’d push through but the pains came back the same as before when I stopped the 1mg. I would advise to go back up to two mg if it was better at that stage and give it more time. I had to start again but my dr agreed I could start at 10mg for four days and if it worked then drop to 5. I’m now on 4 and wondering if to go up to 5 again as I can feel feel a slight pains. Don’t be in a hurry to get rid of that last one.
I do hope your journey with PMR goes as you’ve planned. You’ve done exceptionally well. I can’t advise on alternatives; I haven’t found any. Just a word of caution. Those pains that you can live with can morph easily into a full blown flare and then you may start a roller coaster of management. If determination alone could ‘cure’ PMR, there would be no posts on this forum. Good luck.
I don’t think there is a credible replacement to inflammation caused by an immune dysfunction other than steroids. However, in the long term a diet adjustment of goods that don’t produce inflammation can be helpful. Also gentle daily stretching, exercising and keeping mobile could help but ultimately the cause for your inflammation needs to be under control otherwise the PMR will return!
Good luck!!
"I don’t think there is a credible replacement to inflammation caused by an immune dysfunction other than steroids."
That very much depends which particular autoimmune problem is involved. There are many medications that deal with specific forms of inflammation that are not steroids. But their specificity then introduces a different problem because they don't deal with mixed causes of the inflammation.
When the cause is known, treatment can be target, but I guess I meant unknown root causes to autoimune triggered inflammation. I wish I knew what caused mine…
There are differing levels of "what caused it?". What sent the immune system haywire is one question and much harder to answer than which cytokine is running riot so which is the best fire extinguisher, a question that sometimes needs a bit of trial and error to solve but there is often an answer on the shelf.
As far as I’m concerned Pred is a magical med. I had my hip replacement on 8mg and certainly would have struggled with my rehabilitation post op without it. Painful shoulders and sticks a deffinate no no. I’m down to 5mg reducing 0.5mg a month x
There to be so many mixed messages about reducing or coming off prednisolone before surgery. I did a quick search and found very little, except recommendations to keep taking steroids and give extra during surgery. I had a THR on 20 mg and my Ortho who is the lead consultant didn’t blink and gave me an IV boost during surgery. I healed well. It all seems to come down to the surgeons opinion. There doesn’t seem to be any consistency in practice.
I have had two hip replacements.First one i had to come off pred completly.Around six months later the same surgeon let me stay on 5mgs.I was given iv during the ops to help.I have also had two knee replacements twelve years ago,i was not on steroids then.I found knee replacements a lot harder to recover from.It is all down to your surgeon.Good Luck with your op and use i ce packs for swelling and do the exercises.
Nearly off steroids...
Nearly at Zero....
Dead Slow and Nearly Stop Spreadsheet
Nearly in Club Zero
