long term steriods

anyone else on long term small steriod dose? ive always had a low white count,when dx i was put on 40mg steriod and mycophenalate,wbc went up to 7 then slowly as steriods reduced so did wbc,it hit the floor at 1.8 4 weeks ago so was brought off mycophenalate,its now around it rose to 2.50 but has fallen a little each week(now 2.29) not at hospital till 5th dec but my nurse is talking about putting me back on mmf and a small dose of steriods to boost my wbc,im not keen but if its my only option il have to,felt such a acheivement after 17 mths to finally stop taking them now it looks like il have to take them again.

7 Replies

oldestnewest
  • I have lupus since I was 15 years old, I am 31 now. I don't remember myself prednisolone free for long. ?ost of the time I am in conservative treatment with 5mg of prednisolone daily except from the flare period where the dose is increasing. I had prednisolone free periods but were not long... And that is something that is happening now as well. The doctor told me yesterday I am in good condition and that I should slowly stop taking prednisolone. But I am afraid to do so, I am afraid not to have a flare again..

  • awful isnt it,i hope you stay well,i suppose with our condition its a case of trail and error,good luck xx

  • I have been on steroids since 2005 when odd doses did not control the flares.

    I am on 7.5mg more when I have an infection pehoaps 10mg. I have not had a flare since 2006

    due I think to the steroids. I am now hoping to reduce to 5 after I have got over this quinoric thing.

  • I have been on steriods for the last 25 years of 5mg up to 40mg depending on if I have a flare. My Lupus specialist says he would rather me stay on the small dose than risk a flare. I know it causes other problems ans I do take Co-Cal pills and have a Bone density scan every year and My bones are still great. Good luck.xx

  • I have been on prednisolone since 1984 and my first doses were very high, I have never been off the drug. My white count is also low which is why I am kept on a 5mg dose daily.

    I too have had bone density scans, however although the first was fine the second showed the onset of osteoporosis and possible osteomalacia (this I had never heard off but is a lack of sunlight causing possible rickets!!) I am now on chewable calcium and Vit D and hoping my bones do not get any worse.

    Don't worry about it as I am probably an exceptional case ( the doctors always tell me I am :) )

    I try to keep smiling.

  • thank u everyone for your replys,it really helps so much xxxx

  • HI i been on a high amount of steroids injection for about six years as they have tried all the sle meds on me and my body and liver hates them. I gone from a size 10 to a size 18.Evey 3 months when there due I say I'm not having them. thing start to gone wrong.I hate them...

You may also like...