My rheumatologist wanted me to reduce from 2 mg with a view to getting off Pred. I did an incredibly slow reduction (1 day new dose 6 days old dose). When I got to 1.5 I started to feel super tired and Achey. I couldn’t go to my exercise class which I had previously enjoyed as I felt unwell. No luck trying to get an appointment with the rheumatologist. I was told I would have to wait for five months to see her, so I took myself back to 2 mg and started to feel well again. Saw my Rheumatologist last week. She seemed quite annoyed that I’d gone back to 2 mg and absolutely didn’t believe that it was the reduction from 2 to 1.5 that had caused the problems as my inflammation markers are now low (5). However they were quite low when I had full blown PMR and I seem to be one of the 25% you do not get high Inflammation markers. (Mine were about 20). The rheumatologist suggested that I have another go at reducing when the weather gets better.
She is eager to get me off prednisolone as she seems to think that it creates complications if you need surgery in the future. I spent a year avoiding going on Pred and I’m keen to get off them. I feel a little bit annoyed that my rheumatologist, who is normally very kind and understanding, was so dismissive. Has anyone else struggled to go from 2 to 1.5? I started on 20 and managed to reduce vet very slowly over four years.
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Actually it sounds as if your adrenal function is lagging behind just as much as the PMR symptoms may be flaring. I had ESR levels running at 16-18 for some time when I was in a really bad state and in hospital - no-one commented as it is "in normal range". Not my normal - which is low single figures...
I really don't get these doctors - they make a diagnosis of PMR, a disorder that has a median duration of 5.9 years so 4 years is well within that and for which the only form of management is pred at the right dose. THEN they suddenly decide it is dangerous and we should stop it whether we can manage without it or not. I am very lucky in having a cardiologist and a rheumy who both believe that quality of life is all.
She should be grateful you are well at 2mg and stop pushing. There are plenty of people on the forums who have had hip/knee replacement surgery at 10mg - 2mg is nothing. If she pushes you and you end up with a return of the PMR symptoms then you will probably have to go back to a considerably higher dose to get it under control again - so she will have made it worse, not better,
Thank you for your informed and helpful response. I agree that it was probably lagging adrenal function as I felt generally unwell and exhausted. My NHS rheumatologist is exceptional inasmuch as she will return a phone call between appointments if you have problems, but I did feel Infantilised by her response, which didn’t seem to take into account that I am as keen as anybody to get off the prednisolone.
Thank you to everybody who has responded to me. It’s amazing knowing there are so many kind people Who can share their experiences and knowledge. How do I get my adrenal function checked? Could it be through the GP or do I need to wait for my next rheumatology appointment.?
Your GP should be able to request one - I suspect it depends on the local trust rules. You are at an ideal dose. It is likely they just need time and maybe even smaller steps using Dead Slow might work. But with te synacthen test you at least have the assurance it can happen as long as you go slow. And it is a brick in the defence wall against being hurried.
Dropping .5mg is actually 25% drop which is quite a lot. Doesn’t matter what your rheumatologist says it is the PMR that is actually in control not them. It founds like you are doing well with the rheumatologist’s advice. Perhaps she had a bad day when she saw you.
I too am on 2 mg and I have just started reducing but I only do 1/4 mgs.....so I’m currently reducing to 1 3/4 mgs. I would never try going down 1/2 mg.....my body doesn’t seem to like that much change!
I was on a reduction programme which was one day new dose six days old dose and then Two days new dose five days old dose etc etc. How are you doing it?
I use PMRPro’s DSNS but since I am feeling so well I’m starting at the level where you do 1 day new dose, then 4 days old dose, 1 day new dose, 3 days old dose, etc. I pause for a period of time once I’m on the new dose and once I’m sure I’m stable I start reducing again.
Your body isn't ready for that lower dose. Make your next drop even lower and don't reduce again until the symptoms have completely gone. I have to stay on a dose for up to 6 weeks after I've completed a once weekly reduction - but it's a step in the right direction and your rheumie will know you're trying - but that's not the aim, it's for you when the time is right, just listen to your body, the pain on the day of reduction will go after a few days, they are withdrawals and quite normal. It's important not to reduce when your body is telling you it's unhappy - no matter what your rheumie says.....symptoms sometimes mean more than blood results. You are on such a low dose, wish I could get there. Best wishes.
Me too, 4 years last March so we can't all be wrong. I've been down to 3mg, stayed on it for 17 months as couldn't get lower and professor said he was reasonably happy with that - then had a flare in April this year, following a colonoscopy, and went up to 5mg - tried a 1mg reduction and had the worst symptoms to date - eventually tried .5mg and am stuck on 4.5mg plus really struggled to get there - haven't felt the same as I was on 3mg, felt almost normal and was just getting ready to reduce again..... I'll leave it until the new year after my christmas visitors have gone back and will try another .5mg. For me it doesn't matter how long it takes I'll crush my pred to dust if it helps me, as long as you don't have enteric coated you can do that. My rheumie understands the diffuculties I have and said he will accept 4.5mg for now. He would like me to work out my cumulative dose - since starting pred - it helps to know how near we are to our lifetime limit! I'm not up on that.
I’m pleased to hear that - have been putting it off as didn’t really want to know something I can’t do anything about. He didn’t specifically ask, it came up in conversation and I offered. Not sure I will. 🤔
He has this thing about a cumulative dose of over 10g being terrible (not sure of his details though) - I HAVE to be well over 20g. I have next to no side effects (other than the weight has been creeping up this summer though it started with me trying methotrexate) and my bone density was fine, I have no signs of diabetes, cholesterol could be better but my HDL levels are very high. I can live well - now, which is more important than in 20 years time. I might be dead by then...
He won't chase me for that and will not worry about it either listening to how much you think you've taken..I think your diabetes etc test results are good considering how long you've been on pred - albeit a continuous roller coaster - am pleased you feel you can live well as yes we will be dead at some point - just not yet. ATB
A lot of information I have read says its safe to be on the lower doses. My bone density has actually gone up To normal since reducing. I believe that quality of life is important too. Good luck with your reduction. I’m not starting mine again until the spring. Best of luck.
Quality of life is important- I saw doc yesterday as UTI symptoms remain and while there was coughing, only started that day, and on examination have a chest infection too. I’ve had one every year since diagnosis and usually takes up to a month to go. Has left me with permanent crackles! What we have to contend with eh!
Use the search function at the top right and search for CBD - that should be enough to get a whole load of past posts. In general it seems it helps for some things for some people - but by no means necessarily the PMR. Some feel less tense, some sleep better. But it hasn't cured PMR yet.
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