|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
|
Hi everyone
Just wondering if anyone could advise me on whether or not it is a good idea to get a constant low dose of steroids to add to my cocktail of meds. At the moment I take a weekly injection of Enbrel and Leflunomide daily. I am currently on a 6 week course of prenisilone and I find that I always feel better in myself when I am on steroids. I have had an infusion in the past and also several injections and was wondering how feasible it is to be on a constant low dose of steroids.
Any advice would be much appreciated.
Louise
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Louise
I have only had RA for a couple of years, and am still learning of course. I am sure you will receive further thoughts on this point, however I think the generally view on steroids is that they are a short term treatment so that the other drugs actually do the job of controlling the RA. My consultant tries to get you off them as soon as it is realistic due to the long term side effects, he does not like them at all.
Julia x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Louise
I have been on a low prednislone steriod since Feb this year. They certainly have been
helpful for me, however, I am waiting to start Humira/TNF shortly so I will get
weened of them again. I believe they normally don't like you to be on them on a long
term basis.
Rose
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 2/14/2011 Posts: 301 Location: South Hampshire
|
Hi Louise I've been on Steriods since November (so 6 months now). 3 months of 20 mg a day, then I started Humira in Feb, so have been gradually reducing the dose. I'm now on 7 mg a day - so am waiting to see what they say next week when I see the Rhuem nurse. Once the Humira really kicks in it is hoped that I can reduce down further. The 'feel good' benefit of the steriods lasted just over 2 months; then I lost that benefit (which was a shame - as I did feel a lot better). My consultant said that once the Humira starts working I should start feeling better in myself too - which is exactly what has happened. I am sure the high inflammation levels play havoc with our emotions! And once it's more under control we also feel much better. I know long term steriods have their problems and I've noticed since April, that my skin on my hands has got quite thin and doesn't look quite look right. I know the long term aim is to stop them, but I'll have to wait until next week to find out how practical that is. I couldn't tolerate MTX or leflunomide - so I don't know the next step is. Humira has helped all my joints except my knees - which still have fluid on them - although it hasn't got worse in the last 6 months. Hope you get started on the Humira soon. I am just hoping that it has helped enough - to stay on it! Anne 
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
|
Hi Louise Very debatable!  I have been on steroids constantly, at varying doses, for 22+years and more recently on a maintenance dose of 3mg daily. Normally the adrenal glands release cortisol into the blood stream every morning (the reason we take prednisolone in a morning!). The brain monitors this amount and regulates the adrenal function. It cannot tell the difference between its own natural cortisone and that of steroid medicines. Therefore, when a person takes high doses of steroids over a long time, the brain may decrease or stop cortisol production. I now have adrenal suppression and seemingly I'm unable to produce my own cortisol. Also, long term steroid use coupled with the RA damaged the lenses of both my eyes, and I had to have these replaced! Skin problems ... I won't even go there!! Horror story  I believe there is a place for steroids in the treatment of RA but only on a very short term basis such as bringing a flare under control. Prednisolone does not affect the course of the disease only the symptoms and there are far less toxic drugs that can do this. Conclusion ... if I could turn back time ... Lyn x
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 2/7/2011
Posts: 66
Location: London
|
Hi there,
As well as the-side effects that Lyn mentions, steroids also don't help in terms of maintaining bone density. Yes there are positives - like you I find I have had a boost when Doc prescribes steroids for a bit, and I think for some there's probably no option but to continue with them. However they are rather powerful drugs that can mess you up, and we all react in our own individual way so do talk through pros & cons v carefully as short-term gain can end up with long-term pain. Polly
|
|
|
|
Rank: Advanced Member
Groups: Registered
Joined: 4/12/2011
Posts: 79
|
Was reading about "Lodotra" - has anyone heard of it, take it?
"Lodotra" taken before bed-time 10pm, utilises a modified-release mechanism to release low-dose prednisone four to six hours after intake, at a time in the early morning when inflammatory mediators build up. Maximum levels of prednisone in the blood are reached around six-nine hours after ingestion, to coincide with the time when concentrations of pro-inflammatory cytokines such as IL-6 are at their natural peak in RA.
This night time release of prednisone results in a marked suppression of nocturnal IL-6 levels and a significant reduction in the relative duration of joint stiffness on waking compared to conventional prednisone taken in the morning.
The idea here is improve the worst joint stiffness in the mornings..something I definitely get at the moment.
Darshin
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 9/27/2010 Posts: 136 Location: Stockton on Tees, Cleveland
|
Thanks Darshin
I will ask my RA nurse when I see him on Thursday. As I have said, I am much better generally when I am on steroids and am now half way through a six week burst of them. I want to see if they will let me keep taking them but dont hold out much hope.
Louise
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
|
Hi Darshin This drug does indeed sound very interesting, having just googled it. I will mention it when I next see my consultant. Thanks for the posti, Julia 
|
|
|
|
|
|
|
