Like many of you I struggled to reduce steroid medication. I was on steroids for 14yrs from 2006 - 2020. I found it most helpful to listen to my own body and reduce or up the steroid dosage to maintain a reasonable quality of life. After the first 6 or 7yrs and with many difficult days, I eventually managed to get down to 5mg which I understand, is a level at which you get minimal side effects. After another 7yrs of going up and down to maintain a decent quality of life, I got down to 3mg. Then at beginning of lockdown decided to try to reduce again.
I found the most successful method is the DSNS (dead slow nearly stopped) which I learned about on this website. Having got down to 3mg, I planned to reduce 1mg over 2 to 3 months and repeat over 12months. This worked well up-to the last 1mg. Then I reduced 1mg per week which meant no steroids 1day on first week, 2days on 2nd week etc; making sure to separate reduction day so they didn’t follow one another. When I got down to taking 1mg twice a week I started feeling unwell and nauseous on the day I took the steroid. At first I thought it was because the PMR was coming back and needed to increase steroid dose again, but instead I decided to discuss it with my doctor.
After explaining that I’d been reducing Prednisolone and got down to 1mg twice a week, the doctor said “stop taking the steroid right away!” Further discussion made me I realise that, while reducing steroids my adrenal glands had started to function more normally each time I reduced the steroids. I had reached the level where my adrenal glands were functioning well and when I took the steroids my adrenal glands were being thrown out of balance, hence the unwell symptoms. I stopped the steroids right away and the unwell and nauseous feeling never came back.
However, I did occasionally have pain in my shoulders for a few months but rather than thinking I’ll have to go back on steroids I got my bloods checked to see if my inflammation levels were up. Usually they were at an acceptable level so I kept using heat pads for painful areas and extra paracetamol if needed.
The conclusion I’ve come to is, listen to your body each step of the way, and don’t be quick to go back up on steroids unless your inflammation levels show it’s necessary. But of course always follow your doctors advice or get a second qualified opinion. I hope this is helpful to you and others and wish you all the very best in your recovery.
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Avrael
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I can totally relate to lot's of what you have said.... and will bear in mind about the adrenal problems too, which is a struggle for me right now....Very interesting, happy for you..thank you....
Congratulations and well done on your eventual and successful elimination of steroids.
I could definitely see some correlation between your experience at lower doses and my own current experience. (I've just tapered down from 5½mg to 5mg using the DSNS method.)
Last week, I had what could easily have been thought to be a flare, but because I'm now much more familiar with my own body and how it reacts to different things, I decided to wait before considering increasing my pred dose. It was the right decision, as just as I had suspected, a number of things had contributed to the re-emergence of specific symptoms. Rest, a diet tweak and one or two other necessary measures all collectively rectified the situation within a few days.
Obviously it's important to always work with the agreement of your medical professionals and I am trusted by mine to tweak my dose whenever necessary.
The only thing I would say, is that throughout my 3yrs with PMR, my inflammatory markers have always been within normal parameters and therefore for me, (and many others) not always a useful indicator of active disease.
Well done to you though. 👏 Always nice to hear of positive outcomes.
Hi Kendrew, That’s fair comment about inflammatory levels. I have fibromyalgia and always found it difficult to workout weather pain was FM or PMR, so decided to use a blood test to make sure. I didn’t want to use steroids if my pain was from FM, because with the right rest and activity I found I could manage with paracetamol. Otherwise I’d never have gotten off steroids. It is important to know your own body and do what’s best for you.
I understand completely. Haha!.....sometimes I don't know whether my bad days are withdrawal from previous dose, a flare, side effects of one med or another, a covid infection or something else I've not even considered! Such confusion at times.😄
Congrats. Hope you keep well. Its quite the minefield.!! Out of interest did you ever have a synachten test for your adrenals? Just wondering as you were on pred for so long.
Hi Powerwalk, No I didn’t have synachten test nor ever offered one. I found I had to ask for any advice and the best information I was given was from this website. I learned from here that the pain I was getting in my face and jaw was from taking Allendronic Acid, prescribed along with steroids to help protect bone density. I was taking it once a week for 10yrs and it wasn’t until reading posts on here that I realised some people were having similar problems.
I was given a link to read a report on AA and was amazed that it said it shouldn’t be taken for longer than 5yrs. I immediately printed the report out and took it to my doctor. She then discussed it with a consultant and came back to me by telephone a few days later and said to stop taking it and booked me in for a bone density test right away. Within three weeks the pain in my face and jaw vanished. After 9mths I had another bone density scan and there was no change, so I’m pleased to say didn’t need to take it again, although I have been diagnosed with osteopenia which is probably due to the steroids.
All of us at our age are probably osteopeneic - all it means is our bone density s lower than that of the average 30 year old which is when bone density is at its peak. It ranges from almost normal (t-score -1.0) to almost osteoporosis (t-score -2.5) - what matters is where you are on that range and why you need a scan before going on pred. My bone density had hardly changed in 12 years. No bisphosphonates ...
Not me I’m 70 had PMR for 3years and according to my doctor have the bones of a 21year old! On the down side I think having a high calcium content has led to stones in my gallbladder and kidneys
Well said ,i am on the start of this long journey after failing so many times before to reduce without feeling terrible.Now into my third week and so far i am doing really well . The tapering plans on here are amazing and so are the kind people who take the time to device them !! This is my third week, by now i have always given in due to feeling awful and upped the dose !.This time its all been very slow and atm things are going really well ! As you say hope this helps people to see there is light at the end of the tunnel, you just HAVE to take your time getting there. Again i say thank you to the wonderful people on this site , i could not be doing this without you . PS i will keep posting on my journey ! Best wishes Viv🌷
This is so encouraging, especially for people who have been on steroids for years, who must worry about their adrenal function. Thank you for sharing this.
Congratulations! After being on steroids for such a long time and getting off completely is amazing. I had heard that the adrenals never worked again after so many years and a small maintenance dose of steroids was the only option so your story is enlightening.
I was on others medication for Fibromyalgia, Paracetamol and antidepressants for pain. But nothing to help with steroid reduction. I’ve had to up the pain meds over the last two years since coming off the steroids as they must have helped with the pain. However, I’ve also been diagnosed with osteoarthritis in my lower back for which I now take codeine at night.
The only thing that encourages return of adrenal function is remaining at a low enough dose of pred for the body to register it needs a bit more - and that signals to the feedback set up in the body it needs cortisol to be manufactured. Nothing else will do that. The TCZ only does it by ensuring you don't get flares of the GCA which you deal with by increasing the dose of pred - it has no direct effect on the adrenal glands.
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