Hi everyone. I hope Spring is almost near for you. Here where I live in the States we actually skipped winter and rolling through Spring into summer. I’ve been slowly reducing my prednisone over many months. From 5 mg. now to 2 mg for about 6 weeks.
My diagnosis of lupus came in 2016. I’ve been living with a spine problem for many years. It wasn’t until 2016 though that I began prednisone at 3 mg with my hydroxy.
It is my upper spine where I’ve had several surgeries that refuses to give up prednisone.
Took my first walk in months this morning and it’s always the same result: heavy legs, back spasms that travel to my fingertips. And now I’m on the sofa. My rheumatologist wants me off completely. My neurologist seems to think it’s a cranky low dose. I’m 65. I hear horrible stories of people on them and if you are one of them I’m sorry. The inflammation in my spine only is relieved with low dose prednisone. I’ve tried so many other things. From organic to exercises to anti inflammatory meds. Would you just stop stressing over it and continue the decline or take prednisone at the low dose of 3 mg? Thx MrsMarigold
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MrsMarigold
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I've been on pred for nearly 14 years, most of it at a dose above 10mg, for a couple of years during Covid on nearly 20 as my husband was dying and I was sole carer.
Even at those doses, I didn't have any terrible problems and I am now on a biologic and have got down to under 10mg but am stuck at about 8mg at present. I don't have diabetes, no osteoporosis, the other problems have faded (bruising, thin skin). Most adverse effects of pred can be avoided or mitigated when you know how.
If you are saying you have been on 3mg and that works to give you a half decent life - go for it. Under 5mg is a low dose with a lot less problems, In my community, one of the top rheumatologists in the UK told us he keeps patients at 2-3mg for long periods, sometimes for life, to reduce the risk of relapses. If it is good enough for him, it is good enough for me,
Here where I live in northern Italy my doctors are more interested in quality of life than getting patients off pred. Even being on this biologic, my guy has said the lowest he expects me to get to is 5mg. Any doctor who thinks 3mg does nothing or that it is too dangerous to leave someone on needs as reality check and a taste of living as we do.
Thank you so much for your perspective and telling your experience. Curious though you say/ most adverse effects of prednisone can be mitigated if you know what to do/ what do you do? I’m very happy for you that you are perhaps seamlessly going up in dose and then down. I have to go down from small dose of 5 mg with such tenacity it’s been months to get to 2mg. Every week on this dose I feel worse and worse. Funny how such a small dose affects our bodies/ it is that powerful. I agree with your statements about quality of life and some Drs. do not allow this in the equation of treatment.
I would be ecstatic if I got to 5mg - I struggled for over 4 years to get below 10mg and later had a relapse that meant I was back to 15mg. I would love to be off pred - all of us in my community would but there is no alternative for our rheumatic condition. If it is still active, however low the activity, we need a bit of pred as the inflammation simply builds up again like a dripping tap fills a bucket sooner or later.
Most people complain about weight gain - cutting carbs drastically, especially processed carbs and added sugar helps with that a lot. It also reduces the risks of steroid-induced diabetes and sugar/simple carbs which turn straight to sugar in the body, are very pro-inflammatory so it also helps the problem for which you need the pred. Cataracts happen anyway as we age - I only now after 13 years on pred have any sign of them and they can be dealt with easily enough. At 3mg though, the side effects are usually minimal and QOL is the critical point.
Thx. I do like your no nonsense approach to prednisone and our decisions for QOL. You are so right about inflammation. Allowing it to grow again is unwise. Finding our path through this Lupus maze is hard!! I want a day off from this job😂 xx
I took prednisolone for about 6.5 years at doses ranging from 7.5mg to 25mg. I have also had it intravenously in huge doses to get kidney inflammation under control. I realise that many people will have very different and perhaps more positive experience of using that drug, but my view would be - get off it if you can.
I stopped taking it in May 2013 but it has taken me years to get rid of the 3+ stone I had slowly gained over the years. I was also left with cataracts in both eyes (now thankfully fixed), and the thinnest of thin skin that breaks at the smallest thing. I also get frequent random bleeding just under my skin - which breaks out for no apparent reason causing unsightly purplish bruising. Worst of all - when I was taking it, I became a sleepless, weepy, anxious, depressed emotional mess.
Steroids undoubtedly saved my life. But at huge cost. Those little innocuous looking pills brought me the lowest I have ever been.
It was hell reducing and getting off them - I felt like a monster, with raging anger and mood swings - not knowing from one moment to the next how I would react to something. I was in pain every time I reduced a dose and had no energy - was dragging myself about in a mental fog. Even after I stopped it took a long time to get back to my normal self. I also now become glucose intolerant when I am taking them and worry about diabetes (though I don't have it)
I have had to take it a few times since, short term, but am always very clear with doctors that I am not comfortable about it, and that I want to have to take no more than the shortest term, lowest dose possible. Most recently, I took 30mg for 10 days. Technically, there should have been no problem stopping. ButI could sleep while taking it, and my energy levels sank for days after I stopped. I think steroids are a very potent drug.
I suspect that 3mg won't harm you physically, and wouldn't listen to a doctor who told me it was doing nothing (which is what I assume 'cranky low dose' means). But still, if it was me, I would want to stop. It WAS painful and slow - mentally and physically - getting off them, but I am glad I don't take them any more.
The doctors who recommend them have (mostly) never taken them. They know the science and the theory, for sure - but if they had taken them long term I suspect might have a slightly different view.
Sorry for the long, Saturday morning rant, and good luck, whatever you decide to do.
Thx so much for your detailed reply!! I am sorry you had such a hard time with this drug. I’ve read though that the effects you describe are not uncommon. When I used to take a methyl prednisone pack I learned to change up the dosing so as I reduced it was without the slam of fatigue and downright disorientation. I’ve experienced what you describe on a smaller level. May I inquire your age? As I am reducing to 2mg. I am having hot flashes at 65. And for the record, I do like my neurologist. His ‘cranky’ dose analogy was his Dr. “comfort” for me in taking it. I too have fine thin skin that bruises easily and of course steroids contribute to this. But I had spontaneous bruising even before my diagnosis. Than you for your perspective!
I have been on Prednisolone for probably twenty odd years at times 40mg a day.
I have had cataracts in both eyes now fixed and have osteoporosis. I am currently on 3mg and would ideally be on 5 but my rheumatologist is very anti steroids and refuses to give me 5. His view is that everyone gets side effects from steroids. My view is that I am 65 and like the previous poster am more concerned with quality of life now. I am underweight and actually find the steroids stimulate my appetite and are helpful in that respect although take them predominantly for my joints. So I am on 3mg and unless a miracle drug is found expect to be on them for life. That is my position but we are all different. Best wishes
Thanks for your story. I too am 65 and I agree about quality of life. Putting that into the equation seems to iron out the doubts. I used to be underweight so I can appreciate that. People like to comment on our weight regardless of it skinny or heavy!! My weight gain comes from other meds recently. Blaaaah. 20 years on and off prednisone is still not easy. Best to you MrsMarigold
I'vebeen on hydroxy , pred and other meds over last 15 years - prednisolone being crucial. Have been on 7mg for last few years & currently trying to reduce again as I am now prediabetic. Have also.lost wt. My consultant doesnt think I will be able to stop them now becausecof adrenal insufficiency but I dont think he is too bothered! If I get down to 5mg he will have my adrenal function assessed. I agree totally that it's about life quality and I prefer to live than sit about feeling unwell. 3mg is a low dose. Wishing you all the best in your decisions. I'm now 77 by the way and enjoying myself as an artist.
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