steroids: i know the steroids help us with the sle... - LUPUS UK

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steroids

melj profile image
melj
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i know the steroids help us with the sle but i do worry about taking them for all these years. Just worry about the future as they can be just as damaging. started getting really bad warts latley and am bruising at the slightest knock my consultant says this is down to the steroids! Does any one else have these problems?

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melj profile image
melj
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Jude65 profile image
Jude65

Hi Melj,

I feel the same and am always trying to cut them down as they have caused me to have osteoporosis. Recently though I have started taking Mycophenolate, an immuno-suppressant. It takes about 3 months to kick in but then I hope to be able cut down my prednisolone very slowly. I am very hopeful indeed that in 6 months I will see a reduction.

Are you on any other medication for the lupus?

Cheers Judith

Gloshette profile image
Gloshette

Hi there, Yes yes and yes - I've been on steroids for years on one dose or another, 60mg to 5mg! Think my biggest shock was late last year when i had vision problems, saw Dr and rather off handedly was told I had catarchs due to steroid use!!! You can imagine my horror....... Spent 3 months beginning of this year having surgery and recovering but now vision isnt too bad at all. Needed specs all the time before and now really only need them for driving so eyesight has improved due to getting them and subsequent surgery - Not often there is a bonus from the drugs we are put on :)

It may sound like a bad effect of steroids,( i really did freak out) but in hindsight, it has worked out for the better in many ways.

JJ37 profile image
JJ37

Hi all. I always hear about people on steroids, but my consultant has given me one injection to see if they worked for her to prescrive hydroxychloroquine, then put me on that which I had an allergic reaction to and now they've put me on Methotrexate. Just wondering why I wasnt given the option of steroids for any length of time?

Bizarre how different parts of the Country do different things..

JJ

Skid profile image
Skid

Hi JJ, I take hydroxychloroquine,have done for about 10 months doesnt seem to do much ,although I started on high dose, which gave me terrible stomach problems the lower dose doesn`t seem to cause probs. I have just come off methotrexate, took it for 6months but my CK level shot up to 1922, so its not doing what its meant to. Before that it was azothiaprine which didn`t agree with me. steroids don`t agree with me either, so my rheumy is now considering Mycophenolate. Oh! well we will see, meantime I just plod on, Has anyone got sjorgrens like me and gastro oesophogal reflux, if so do you have problems with a persistant cough. I do and it drives me Loopy.!!

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