Yesterday I went to my rheumatologist appointment. I am currently on 4mg of pred as advised by the rheumatologist following a short synthacen test which show low adrenal activity (360 after 30mins, 420 after 1 hour). He seemed to think that 4mg was as far as I could expect to reduce to - which I guess makes a nice change from doctors who just want to get you off asap - but what I didn't think to ask him was whether long term use at 4mg was OK or whether it will ultimately shorten my life expectancy. He did agree that I could try tapering further if I really wanted to.
I wasn't totally sure that he wasn't thinking that my adrenal glads are totally inactive and not likely to come back whereas I was under the impression that 4mg was still enough of a dose to fool my adrenal glands that they are not needed. He said he couldn't do any more for me though has kept me on patient-initiated appointments ie I can call him if needed.
So my question is, should I be happy to stick on 4mg forever and think that a reasonable deal? To pre-empt the question, my inflammatory markers were down at the last blood test (though we took a further one yesterday) but I can still feel what I think is PMR in my shoulders and leg muscles mainly based on the bi-lateral criteria, though it is hard to tell what is caused by what.
What do people think?
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marionofnorwich
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Sometimes i do, and a few weeks ago i felt rubbish. I do have sudden 'crashes' especially if i have a busy day but feel as though i need these to stimulate demand on the adrenals. Personally i think they will get going - i cant exactly say why but i am going to stay on 4mg for a bit and maybe 3.5 if i can and see what happens
On the other hand mine was about the same on 4mg and I wasn’t feeling great either, though tonnes better than I had been. They still wanted me to keep reducing and at 1mg per month! They said that the only way my adrenals would start to work would be to further challenge them. I refused that speed and said my domestic life was too difficult to cope with as well but I would go at my speed. This was 0.5mg over anything from 8-14 weeks. Why are they so pessimistic?
I’m on 3.5 mg and have been on prednisolone for 10 years. I am continuing to use the DSNS method to reduce. I saw my rheumy yesterday. (Had a dexascan a couple of months ago). He said that he doubted I would ever produce my own cortisol having been on Pred for so long so to continue tapering if my body allowed. He said that 2-2.5 would be the kind of dose I could take for the rest of my life. He said my bone scan results were some of the best he’d seen. I take Adcal D3 but nothing else for my bones. He said to try to lose some more weight and to exercise - swimming/exercising in the pool and some walking. I’m already doing these and I’m on a low carb diet now which is working. So at last I feel this is manageable. I get to see the rheumy every 9-12 months so I feel I’m lucky. I do as much as I can but I never forget I have PMR - if I do too much it reminds me. I will continue to taper but not relentlessly- I’ll take what I need to manage this condition and give me a good quality of life.
Look at the 4mg pred - if that is really what you end up requiring but as Snazzy says, nothing is written in stone - as replacement therapy for a lack of cortisol. Would you worry about being on a low dose of insulin or thyroxine for life because pancreas or thyroid were struggling to produce them? Reduce the pred and - ideally - your body will replace it with cortisol, also a corticosteroid. Your body needs one or the other to function properly.
If you try to reduce at the speed most doctors expect you to, it is like a bull in a china shop. Do it VERY VERY slowly and your body might manage to keep up and produce enough more cortisol for you to get to lower pred.
Yes this is how i am thinking. Logic seems to say that i need cortisol in my system and does my body care how it gets there but it is the variable levels that i guess the natural system offers ie delivering the amount of cortisol needed at any time. If the physiological is around 7.5mg then at 4mg i am not getting enough unless my adrenals are topping up. Although i think Max was suggesting that the physiological dose was less and could be 4 or 5mg
A study from I,perial in London suggests as low as 2mg ored can be adequate day to day, The spikes in stress situations can be up to 10 times as much - or more.
Not really sure why after 3 and a bit years he seems to think
a. He cannot help, b. It’s not PMR., and c. Adrenals aren’t trying to do their but, and will improve in time.
Would say to be quite usual after that time, and that there is no reason why you cannot continue a slow taper and get to zero and PMR goes into remission. Your bilateral pains sound very PMR ish….
Just keep doing what you are doing …but don’t let pains increase, and keep plodding on - with GP.
Yes i will. I know people dont like being on steroids but can they do much harm below 5mg? That being a natural level. Clearly flooding the body with more over a long period isnt good but hopefully 4mg not too disruptive
We might not like being on Pred, but if we need it, we need it… and no, at low dose there isn’t that much harm in it… probably no more, and maybe less than some other drugs taken long term. And most certainly safer than uncontrolled inflammation in your body.
My own GP assured me that under 7mg daily pred was considered to be fine long term when I had to report increasing from 5mg to 6mg. Sadly the osteoarthritis in my hands was screaming to be noticed at 5mg and alongside the adrenal issues I wasn’t managing. He told me I could take up to 8 paracetamol a day for the hand pain.
Yes. My main symptoms are muscle stiffness and muscle fatigue, pain in some muscles. I cant walk far or for long but it is improving. I feel that as long as things are improving rather than getting worse, time may sort things out. I feel that ibuprofen might help some of my discomfort (which is one-sided and an old friend) but wary of taking ibuprofen as well as pred for stomach reasons. Opinions welcome there too
I’ve been on pred 8 yrs now yo-yo ing like a lot of people do . I was told I would be on 5mg for life , got to 2mg but felt dreadful , stayed there for 2 months nothing improved , back to 5mg , at 4mg I fell the so called inflammation bucket filling up so at the moment at 4.5mg and can do virtually anything I like exercise wise. I noticed my bones hurt more than my bones so questioned the PMR diagnosis , after a multitude of tests bloods etc , I have been diagnosed with RA , SAPHO and a lot of osteoarthritis in joints probably from a life of combat sports (which I still do) added 10mg meta jet MTX for that side of my immune issues. I hoped it would help get me off pred as a sparring medication but no such luck on both now and if I wish to maintain my current life style that’s the way it will be . Trying every holistic approach I can ie diet styles , yoga daily , wimHoff cold treatment and breathing , meditation, good sleep patterns, zero alcohol , Supplements turmeric , ginger , omega 3, glucosamine you name it I’m on it or tried it . I’m open to anything anyone can add to ideas that might reboot my immune system . Only down side for me is I’m currently in Tenerife and my body no longer likes hot climates whether that’s the drugs or the conditions I don’t know . I’m writing this hiding in the shade while my wife soaks up 30c on a beautiful day in paradise for some. Have a great day where ever you are 👍😀🥵
Thanks Gaz227 . I am in sunny Norfolk, not hot but pleasant enough. I think I have the same issue of dis-ease in much of my body but not clear what is the underlying cause. You are more dedicated ref alternative than I am, and I can't even remember to take my pred early in the morning as I am typically a couple of hours behind most people timewise in everything I do, and I start supplements but then realise I have forgotten to take them after a few days. But I have moreorless decided that rather than try and change long-engrained habits and inclinations I will carry on doing the things I naturally do which are generally healthy - ie eat a natural and varied diet, little processed food, cooked fresh, moderate alcohol, cycling and then try and improve - lower carbs, more swimming, cut out sweet things as much as possible and remember supplements when I can. And keep active which I do and not stress about things. Though we do have a big job i hand as we really need to downsize and bit and de-clutter as we have so much stuff and a sprawling house and workshop - need to rationalise it all. So no relaxing on a beach for me, sadly!
Around my fifth and sixth year of PMR, I varied from 4 to 3 mgs pred for over a year. During seventh year, I dropped more quickly to 1 and currently am taking 1/2. It took me about six months for each drop of 1/2 mg. I had two operations during that last two years reduction time. I hope this helps.
I notice that you have only been taking pred since 2020? You have done a a fairly fast taper and your adrenals are not yet ready to wake up and/or PMR is still waiting to reappear.
Must admit the adrenal issu es confuse me! When I saw an Endocrinol ogist several weeks ago she said we will do a short synthacen test and if it is 450 you can stop the pred the next day!.....in my mind I was thinking, I don't think so, considering my last one several months ago was 124....I was and still am on 4.5mg........she hasn't sent me the test yet!......such a minefield....
yes I’ve been thinking the figures you produced after the test are tons better than both my synacthen results & I was told to stay on 3.5mg indefinitely. I’ve been on pred since 2011. Got down to 2.5 with extreme tiredness but PMR symptoms mostly gone. Told to up pred to 3.5 & I manage other OA pain & muscle pain with occasional Ibuprofen & cocodamol. My problem is if experiencing stress my body doesn’t cope well at all now. Very active, on a cycling holiday just now, but the worry before the holiday really took its toll! Hate taking the pred but am told I have no choice. If you can reduce a little I certainly would at those figures. (Currently sitting in bed with cold compress on knee 🤣🥴).
I've been told to stop when I get to 3mg. I'm just glad everyone's stopped trying to make me do without pred (ouch!). And if 3mg works for a while, like you, then I'll try to go just a bit lower.
I am on 3-4 mgs and my concern is for my heart. I don't know if PMR or the prednisone is causing me to have afib. Maybe, neither, but it concerns me to be on prednisone long-term. But, I agree with others that uncontrolled inflammation is damaging also. Is there a win here?? I am losing hope with all this. Been on pred for 1 and 1/2 years. Diclofenac before that for the pain until diagnosed. All this is hard on our bodies long-term. Now on blood PMR does make me lose weight if I eat what we should eat to curb inflammation. Confused!!
In my case it was the PMR - they are confident that the autoimmune part damages the sinus node that governs heart rate. More pred actually improves the a/f when it is misbehaving despite medication. I am awaiting an ablation.
If you cut carbs to curb inflamation - it helps lose weight when on pred.
Thank you sweet lady! I see my cardiologist this week. More discussion. I sure appreciate all you from the UK as you appear ahead of us on this PMR issue.
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