I have been reading how so many off you are on predisolone long term. My doctor and the specialist won't let me have them on a long term basis. I have fibromyalgia Ulcerated colitis and inflammation and the predisolone really help me a lot. They keep my pain down tremendously and I can have a good life on them. When I was only on 5mg it helped a lot. If I take only 5mg a day will that do any harm to my bones? I am waiting on a appointment to go into hospital and have some injections that my rheumatologist specialist is making for me once a year to help strengthen my bones as I am only on the borderline of osteoporosis. He gave me tablets that I had a bad side-effect from them. I hope someone on here can tell me if 5MG predisolone will do any harm to me? I started in November on 40mg and now down to 5mg. In 2015 I was on 5mg for a year and I had the best year and pain was nearly all gone.
I wish you all well.
Jan101 🙏😘xxx
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Jan101
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I don't have lupus, I have polymyalgia rheumatica. The only option to manage my symptoms is pred, nothing else works at all. I have been on pred for over 7 years, most of it at above 10mg, and my bone density has barely changed, still well in the acceptable even if osteopeneic range. I have no diabetes, no cataracts and as far as I can tell, no serious side effects.
Depending on the illness, there are some people who are on 5-10mg for many many years. There is one lady on the polymyalgia rheumatica forum on this site who has been on Prolia because of osteoporosis for 2 years, her bone density is back to normal - and she was on 5mg of pred the whole time as she has adrenal insufficiency due to having been on pred for 15 years, she can't stop it.
Out of interest - does the 5mg also help the symptoms attributed to fibromyalgia?
But if 5mg makes live worth living - I'd be asking quite firmly why I couldn't have it.
Yes they helped my Fibroneuralgia fantastically. When I was in Spain I saw the doctor and he put me on 5 to 10mg per day and for full year and I only took 5mg per day with great results I was great no pain no flareups felt like I was 10 years younger. I told my doctors and they were still insistent that steroid is very bad for you and would not prescribe Predisolone for me. The doctor in Spain gave me cortio steroid. Not sure if that is how you spell it but he did say that you don't get the swelling on your face and put the weight on and I didn't so that was really good. Every time I ask they say NO to me. But this time when I see my specialist he put me on the steroids because I had a very bad flare for two months of diverticulitis and that has helped me tremendously with the diverticulitis, ulcerative colitis and my Fibroneuralgia. So when I see him in April I'm going to ask if he will put me on a low-dose of steroid. Because I had my bone density done test done and I am only on the borderline of osteoporosis. This year I have five fractures in my spine and had vertoplasty done an RF Fusion. I did wonder if it was due to taking a very low dose of steroids for one year. Sorry for going on but I thought it's better you knew a little more a about what I had. Thank you so much for your reply. I truly hope you are well.
Prednisolone is a corticosteroid - but I know the Spanish often use a different one. But at 5mg very few people would get the fat face anyway. The Spanish do seem a bit paranoid about pred...
But if your "fibromyalgia" (you do mean fibromyalgia don't you?) went away with a steroid - it wasn't fibromyalgia, it is something else that is due to inflammation. And if 5mg made you that well - I'd happily take the risks - and the Prolia or whatever!
You are absolutely correct about the fibromyalia. I have been saying this to the doctors that I don't have that because I only have a couple of joints that may flare at one time. Maybe my wrists, knees or ankles. I have been saying for a long time I think it's inflammation. I will speak to my rheumatologist when I see him again I did also mention it to him but he never said anything back to me. I think I will continue to take a low-dose because It make me feel so well. I am determined to get to the bottom of what is really wrong. Thank you so much for your advice is much appreciated. Keep well and take care. Jan101 xxxx
When they done one test they said I had rheumatism of the hands and the feet. But never mentioned any where else. But the replys has given me the determination to get to the bottom off this as I want to know what is really wrong with me. It's so wrong when they don't have a answer that they put it down to Fibroneuralgia. My last doctor told me that it was fibroneuralgia and he could do no more for me. But now he is retired my new doctor she is very good and I will ask her to look into this some more. At least now I can go with some additional information. Thank you so much for your replies. Jan xxx
It sounds to me like you need a proper diagnosis and treatment plan. Prednisolone can mask underlying diseases making diagnosis more difficult. Although it's the treatment for PMR it's not the recommended treatment for other auto immune/ auto inflamatory disease. It's used acutely to control flares of Ulcerative colitis but long term meds like Azathioprine etc work better.
Although some patients have no choice but to take pred long term your Dr's would be negligent prescribing it under these circumstances especially with 5 vertebral fractures!
It is a common treatment on its own for several autoimmune inflammatory diseases - like dermatomyositis for example. But it is also used longer term in small doses, like 5mg, for many patients with rheumatoid problems in arthritis.
All the top Consultants who treat Rheumatoid arthritis use very little prednisolone as there are other more effective treatments.
Patients with ANCA Vasculitis get acess to biologics if they can't reduce their steroid dose.
If it wasn't for the fact that it is the only immunosupressant that is very quick acting then I doubt it would be used as much as it is. There are studies looking into reducing the steroid dosage for inducing remission in ANCA Vasculitis because it is associated with so many side effects and harm. You may start off on 5mg but the temptation is to increase the dose when it becomes less effective as it will. Much better to get a proper diagnosis and effective, evidence based treatment than apply the pred sticking plaster.
This is perhaps a little longer reply than I would have liked but I thought you should know the background.
My consultant also said he didn't want me to be on Prednisolone long term but acknowledged that it seems to be the only thing that works and until they get a medication regime that works he will prescribe it. I have had a lot of different medication since been diagnosed with CTD & RA and none of them have worked for various reasons. I am checked at my doctors surgery fortnightly, blood urine etc and have had bone density tests done which show I have not changed since going on them. I also take calcium tablets to help and a tablet which protects my stomach.
I have had Prednisolone on and off over the last 2 years and have now been on it solidly for 4 months and have got a prescription for another 2 months. I have taken 20mg a day for 1 month, 15mg for 1 month and am now on 10mg a day, which I will stay on until I see the consultant again, hopefully in March.
You need to see your consultant and tell him, politely but firmly, that you would like to try Prednisolone to see if it helps. If you are checked on a regular basis, especially your bone density, it should be fine. If not he can always take you off it. It is after all your body and I knows consultants are the experts but some do seem to be very set in their ways! One Specialist Nurse told me that Prednisolone is very expensive so some consultants don't like prescribing it. Most importantly don't be fobbed off!
I have no idea where your "specialist" nurse got her information - but she is wrong since one thing ordinary pred isn't is expensive! 30 x 5mg tablets cost about £1.30 in the UK. Enteric coated pred is marginally more expensive a £1.86 for 30 tablets but saves the cost of stomach protection medication. I take a relatively expensive form of pred called Lodotra which is a delayed release form designed to reduce morning stiffness by taking it at 10pm - it costs about £25 for the same amount and while approved in the UK its use is discouraged.
I also fail to understand the fear of using low dose pred when it is the one thing that works for someone - after 7 years of pred I have no problems, They are not inevitable - any of them.
Thank you for your reply. do I ask my rheumatologist, or my ulcerative colitis specialist? I have felt for a long time that it is a inflammation problem, but then it could be something else. I really do hate coming off the steroids because then the pain comes back. I know what you're saying I should have checks done but I am not having them and I know they are necessary. If I come off the steroids I don't know how long before they stop masking other problems? I am very soft natured when it comes to doctors and specialists, but I am going to be strong and firm a ask them for other test to be done and explain to them once I come off the steroids the pain comes back. When they do my blood test it always comes back that my inflammation levels are are fine. But we all know our own body and I feel it is some sort of inflammation problem.
Many consultants are reluctant to prescribe steroids unless they are absolutely needed because of the wide range of side effects that they can potentially cause. They are often a very effective treatment for controlling flares and can be life-saving, but long-term use is generally undesirable - the risks of side effects have to be outweighed by the benefit they'll have.
A recent study has shown that even small doses of steroids (below 5mg) can potentially contribute to long-term damage - medpagetoday.com/Rheumatolo...
Discuss your options with your consultant and see what they suggest. See if they can explain the reasoning behind their decision more for you.
Thank you so much for your reply. I will certainly speak to my consultant and also do some research myself. I really don't want to be on something that will give me additional long-term problems. Also thank you for your link.
I hope all is well with you. Take good care. Jan101 xx
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