i have lupus and really want to get off the stero... - LUPUS UK
i have lupus and really want to get off the steroids, as soon as i cut down im crippled with pain. any suggestions? thank you
A year ago I was on 30mg of prednisolone and I have gradually tapered down till today I started on 4mg. Initially it can be quite painful for about 5-10 days and then it gets easier,if I found I was near the 10th day and the pain persisted I would go back up to the previous dose for a week or so. The main thing is to do it very slowly I go down 0.5mg every 3wks, the lower you get the slower you taper. My GP said the pain would come back but I had to try and get off it. Mind you I still have some pain but it is bearable. You did not say what dos of steroids you were on? I hope this is of some help, persevere and hopefully you will get there. Good luck and let us know how it is going.
hi beckside. thanks for your reply. i managed to get myself down to 5mg which i still have some sort of joint pain but put up with it. now Im in the middle of a flare up and gone up to 10mg but still crippled especially mornings. Im just so concerned about my weight gain. do you take any other medication? i tried methotrexate but did not get on with it.
It took me 6 months to get from 5mgs to 0. I went down half an mg every 2 or 3 weeks. Each time I had crippling pain which I would weather until it subsided then reduce again. I even ended up in hospital with an adrenal crisis at 3mgs but kept going as My doc had told me it would be hard. Finally got off them. I remain on 25mgs of Methotrexate. And 400 mgs Plaquinil etc but over the last 12 months have lost 30lbs with weightwatchers. Hang on in there is my advise if the doc has given you permission to reduce and come off them. Good luck xx
Thanks for your reply, I am on Mycophenolate Mofetil (MMF) started on 500mg and gradually increased to 2G daily, this is also an immunosuppressant. I did not have too many problems getting used to it. Whilst on this drug I have a blood test each month to monitor white cell count I can also monitor the inflammation levels, since lowering my prednisolone they have not shown any significant rise, even though I still have some pain. I totally understand your concern of weight gain I have put on 3.5 stone and I absolutely hate it. I went on a diet for a month and lost nothing, and now even more down in the dumps and fed up. I am unable to excercise because of the pains in my muscles & joints and shortness of breath. Maybe if you are in a flare you might need to increase steroid a bit more to bring the severe pain under control. With Lupus there seems to be no easy answers.
Hi mckeowen
I was wondering what problems you had with methatrexate? A lot of people have GI problems, but there is an injectable from also available to avoid this. As the others say, you may need another immuno-suppressants, they are also referred to as steroid sparing drugs. This will suppress the lupus activity, so that you can reduce the steroids without becoming too poorly & in pain.
Best wishes. X
high there
beck
i am on steroids oral
for 8years
the last 5 years i have been on infusions[Methalpred}
every month as well as oral steroids
which has caused me to have osteoporosis
i now have a spinal fracture's so be carefull of the steroid s its the side affects they do'nt tell you about
I am attempting my 3rd taper from 60mg of prednisolone. Day 3 on 50mg and all lupus stiffness has come back so back to codeine and tramadol. I am trying to push through though in the hope it's more of a withdrawal than another flare. Been on methotrexate and plaquinel for 8 weeks and it doesn't look like it's done much 
hi everyone. the methotrexate worked for my Lupus but had horrible side effects. really sick, hair fell out, felt groggy . i took myself of it. gonna go back on to azathioprine i think. taken 20mgs of steroids today as couldn't get out of bed. this is the longest flare up I've had. just want it to go now.....been 3 weeks. any one tried a certain diet to help with Lupus symptoms? thanks all.
scoo.....methotrexate and plaqunil can take a while to kick in.....mine took 3 months and they did help.
