I am now taking 0.5 mg of Prednisolone every fifth day. I planned to extend it to every sixth day for the next couple of weeks and then to every seventh day until the end of this month. Is there any point in doing this? Could I just stop? I am not sure what 0.5 mg is doing for me as I can't feel any difference on the days I am taking it.
I need to get enough sleep and allow my muscles to recover after exertion, otherwise, I feel mostly fine. I started finetuning my diet with the Zoe app, which works for me, and I am trying to devise some sort of regular exercise routine to work on my muscle strength and stamina as doing Pilates once a week is not enough. I have also increased my hours at work, I now work four full days, but can still work two days from home which is very helpful.
Any words of wisdom from the veterans on what pitfalls to avoid will be gratefully received.
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TheMoaningViolet
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That's great news Violet.No wise words from me as you're I'm the lead. However I'll be taking notes as hope to be catching up with you in the not too distant future 🤞🤞🤞
Might just as well continue you are - as it’s only another few weeks.
Just remember you adrenals may still take a while longer to be in tip-top condition [well documented it can take 6-12 months for that to happen after finishing Pred] so just keep a few Pred on you at all times, in case you find yourself in a stressful situation - and they don’t gallop to your assistance .
Good luck - and just make sure the extra working days aren’t too much… certainly initially.
Thank you. It only works because I can spread it across the whole week if necessary. Without that flexibility, it would be hard. It's not like I have nothing else to do with a busy husband and a 15-year-old about to do GCSEs.
Gets them in practice for later - she said unsympathetically!!! Though thank goodness mine were through before the nonsense that is SATS, However - it doesn't stop there, one daughter has notched up an Hons degree, a vocational foundation degree (paramedic) and now 2x MScs for advancement and I've accompanied her through them all! This is the young woman who keeps telling us she's failed - and then gets a distinction ...
T'other has her nursing degree and is just about to start an MSc to become a specialist nurse practitioner in endoscopy. SHE has ADHD so this should be a bundle of fun burning the midnight oil as she leaves everything to the last minute ...
Well done moaning Violet and very well done to your daughters Pro. They are great girls packing all that in and still doing very stressful jobs. I'm afraid the youth of today are not taught to cope with any kind of stress.
How do you deal with it? I get all the stuff to read through to catch the major mistakes. It always seems fine to me but all the jargon from the non-medical stuff they have to do these days just flies over my head ...
Hi Violet, sounds like you are certainly on the mend. I have a small suggestion, one that worked for me so far … have you tried cutting your .5 in half? I went from a half to a quarter and stayed there for ages, just to be careful. It’s just another gradual step but the experts on here have said that the tiniest amount can make a difference.
I am on half a milligram and my Consultant has told me to come off completely luckily I have some spare prednisone and will continue now going down to a quarter
I would. I did! But I'm very cautious, my Rheumatologist went along with it but she thought I was nuts! You don't want to jeopardise all your good work.
I’m currently tapering from 0.5mg to 0.25mg and at the stage of mostly 0.25. Walking in the heat yesterday I was struggling and had to take an extra 1mg. Just throw this in for your consideration. We’ve been taught here that adrenals can take 12 months once off Pred entirely. If you go cold turkey I’d recommend carrying emergency Pred with you at all times.
Thank you. I have been tapering very slowly, so I think my adrenals are catching up without too much stress. It has been my policy all along never to allow my body to suffer too much while reducing steroids, but also, never to increase it either as I suspect this is also stressful and confusing for the body. I have never taken extra Prednisolone for any reason, but I have been lucky not to have any major illnesses during the past four years. I will follow DL's advice and continue as planned by extending my days without steroids for a few more weeks. There is no point in rushing it now.
I did about 10 days at 0.25 at the end, no idea if it made any difference, I just did it for my own reassurance. Have been zero pred for over 9 months now but taking MTX (although have a plan to taper off that). So far so good but not taking anything for granted. Good luck with your own taper off.
I think that towards the end we need to overcome our own attachment to the medication, not just physically, but also emotionally. I can feel my own reluctance to let go and trust my body to be okay.
Good to hear you've managed to come off steroids and I wish you a permanent remission. All the best for tapering off MTX. Vx
Hi! Well done! Inspiration to us all. I am doing a very very slow taper from 1mg, have been down to 0.5mgs in the past , but it was too fast. I understand what you say about the emotional side of our lives, hanging on, but the thought of a flare upsets me, so slow slow, and more slow.
Your message sounds incredible to me. I've had PMR since 2020 and every time I get below 5 MG of prednisone my body reacts badly. I would give my little toe to be in your position. I am very interested in how you have accomplished getting to .5 MG every 5th day 😲
I've had PMR since 2020 and every time I get below 5 MG of prednisone my body reacts badly
Sounds as if your PMR could still very much alive and kicking -and at 3 years that’s not surprising -despite what many doctors think or much of information out there says.
But if could also be adrenals -so what exactly do you mean by “body reacts badly”?
Very slow tapering may help - if not already using… see here -
Hi, I can show you my taper, but it worked for me, it's not necessarily of much use to anyone else. It took time; I first started experiencing PMR symptoms in August 2019. I managed to get to 4.5 mg in the first year. I changed a lot of things and learned to be very patient with myself. There were people who managed to get off steroids a lot quicker than me. I would read their post and be amazed. I found every drop to be a small challenge, but not a terrible one as I followed the recommended slow tapers ever since I got down to 7 mg when I also started reducing by 0.5 mg. There were a few false alarms along the way. I held my nerve a few times and stayed on the same dose for longer. In many ways I was lucky: I started the treatment early (December 2019), the pandemic made it possible for me to work from home and allowed me to pace myself; my family was lovingly supportive; I had access to information (including this site), good food, physios, Pilates teachers, sensible doctors and I was relatively young when it started (52). Also, I've never lost faith in my recovery. My friend who survived breast cancer told me how frustrated she felt with her body for letting her down. I have never felt any frustration with my body; it was doing the best it could to keep me well, I just put too much pressure on it. So, in a way, the last four years were all about the journey of learning to love and support my body and give it time. I am getting older, I can feel my strength is not what it was, but I can try my best every day and be gentle. The emergence of this attitude has been one of the most valuable experiences of my life.
Thank you for your story. I need to be patient with my taper, eat right, and exercise. My attitude toward others and life in general has changed greatly since this has affected me. This site can inspire me and help me to be successful.
I've always used a Prednisone taper on a 24 Hour cycle. You have stretched out your taper beyond a 24 hour cycle. How did you get beyond taking Prednisone on a 24 cycle? Can you help me to understand that?
Hi MV, sorry for the late reply, yes I see this image. Is this an excel spreadsheet? I saw somewhere that DL has these spreadsheets. I can get one if I PM her with my eMail. How do I send a PM?, have never done that. I see MyFeed, MyHub, Chat, Alerts.... nowhere does it say how to PM?
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Off to the Hospital and home again
When will my adrenals come home?
home blood pressure monitor please
Problem in Care Home
