On 21/04/2015 my Rhummy Dr put me on a trial period of steroids to see how I got on. They were to be for 4 weeks and then he would see me within 8 weeks. After reading the leaflet that came with the steroids Predisone (can't spell it), I terrified myself, that I was going to have all these side effects. What I did find was that I felt a lot better, I started to feel more like me which I had not felt since 2010 when all this started. When the 4 weeks trial had finished, I could see the change and starting to feel poorly and excessive tireness/exhaustion crept back in. So I have been counting the days till the 8 weeks was up, when I could go back and see the Rhummy Dr to tell him how effective I found the steroids. Problem.....the 8 weeks are up next week, but the only appointment that they can offer me is 04/08/2015. I have contacted the secretary, and said that if I have to wait till then can I not have a prescription or for the Rhummy Dr to contact my GP for them to issue them. I received a abrupt, no, it was only a trial and I would have to be seen in clinic first. So I now have to wait for the appointment.

My question is did other people find steroids effective and also, are they on a long term treatment with them.

Thank you

5 Replies

  • You havent said if u have a diagnoise??

  • Originally I was told they suspected SLE due to my positive bloods and I was put on hydroquinne (can't spell it). I then got diagnosed in addition with fibromyalgia, and now in addition I have been told I have mixed connective tissue disorder. I also have an underactive thyroid. I have nodules on my lungs, thyroid, breasts. I have dysphonia, chronic bronchitis, hiatus hernia, IBS, hypertension, photosensitivity, losing my hair, folliculitis, bloods spots on skin, rash on face.

  • Hi , I have autoimmune hepatitis and I'm also looking at a connective tissue disease with possible lupus diagnosis , I have been on steroids since dec 2013 although now only on 5mg a day , what dose were you given? Your not supposed to just stop taking steroids if you take them for more than a couple of weeks.

  • TeddyM, steroids have got me out of a lot of troubles over the years, a wonderful drug but nasty side affects. If on them for long periods of time you can get Diabetes your bones become brittle to, there's probably a heap more but I can't remember them. I have been on deaths door a few times and Pred has saved me. With being on Steroids, I felt like I could take on the world, felt really strong to. I think prednisilone is known as The Wonder Drug.

    Take care.

  • Thank you for replying to my post and giving me your experience. best wishes x

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