Steroids ??

I have been led to believe steroids will be the only way to be propely pain free from discoid and fybro ??? i know there side effects so am not really wanting to go down that route,will other medication help as well as?I diagnosed discoid 3months ago and today with Fybro!I also have Livedoreticularis(cardio vascular thingy)looks horendous! h ey i need to learn alot.thank you for any help.

13 Replies

  • i will say they are not without annoying side effects like weight gain and a rounded face..but they have always been effective for me as they relieve the inflamation and swelling of both joints and rashes..other side effects of them damaging skin and bones are usually only if taken at high doses over long periods of time..i had both hips replaced due to 1500mg of iv steroids..but lower doses ie 20-30 mg for a few weeks/ months should not cause any major probs, and shud settle things down for you within a week..and if you are worried about bone damage, ask for calcuim supplements..good luck, and yell if you need to chat, i more thn happy to try n help if i can x

  • Thank you so much for this,,and omg you have been though alot and you are so helpful.All i would love is some proper pain relief,,maybe then the energy may improve as i think pain is very tiring!Iknow they cause bloating my dog was on high doses,i know she a dog and not human but her weight gain was horrendous,,she died last january.Id had her 13years.still heartbroken.Hey thanks again,,ive alot to learn about this crap disease yet! :)

  • i am on 15mg at present..n weirdly enough wen i was on 20mg i actually lost half a stone..if you learn to stop eating when you are full and limit the calories you have daily you will be fine..basically they give what i call 'steroid munchies' where you can feel you are full but the brain keeps screamin ' i neeeeeed food' ..

    and i empathise with the loss of your pet..we lost tara our cat last year..had her 14 years :(

  • When I am on steroids I eat a loaf of white bread a 14 year old daughter thinks I am growing a pillow for her when I am on steroids..

  • I have been on steroids for 17 years (7 to 10 mg prednisolone). The plus side is that it has controlled the pain in my joints and muscles which is a huge relief and I have never put on weight but do eat carefully. On the minus side it has slightly changed the shape of my face and I have a pad of fat at the back of my neck and osteoporosis of my bones. I always try to be on as low a dose as possible and in recent years have only gone up to 10 mg for a few weeks, for example if we were going on holiday on our narrowboat, and then dropped down again gradually.

    The best of luck with deciding what to do. We only have one life which is nothing if we are in constant pain. I have never found that pain killers touched the pain, only steroids help.

  • I have just started a course of prednisolone for a week again, 30mg a day for 7 days, to try and get my pain under control. Then they want to put me on a long term low dose to try and keep it away, not sure whether I want to do this or just wait till the next flare and take a weeks worth again. I worry about the weight gain and osteo.

  • Thank you all so much,,very helpful xx

  • After many many years it was finally recognised that I am steroid resistant ....... which explained why this therapy never helped me!!!

  • if it helps sue do it... the weight gain can be limited, and the osteo thing can be sorted by takin a calcium med (tho will warn ya the adcal stuff tastes vile) i will still take steroids if i havin bad time with rash and joints, even tho i had both hips replaced due to very high (1500mg) of steroids back in was a crap thing to go thru, but my bone marrow had stopped workin and i would of died without the iv steroids, so given choice of severe flare/death or the risk of possible bone damage i know which one i would choose and always will..good luck with whatever you choose :) x

  • Im currently on prednislone and as much as i hate the weight it is putting on me, my face especially looks so strange, they do help and are worth it in the end. i asked my doctor about the new drug they have approved called benlysta? but he said they wouldnt keep me on the steroids if they thought there was a better alternative. the benlysta may not work for people who have kidney involvement. which i have and also type 4 Lupus,but i still think its worth a shot, nothing ventured nothing gained. you should defo mention it to your doctor xx

  • I'm taking prednisolone too and for me if they work then I have to take the other things that go along with it. I originally had a Kenalog injection and started taking 20mg of prednisolone and I didn't put on any weight at all. After I dropped to 10mg I put on weight so fast I didn't even see it, luckily I went to the hospital and they weighed me as usual and I could see how much I'd put on and could stop it there. I've managed to get rid of it all but it's taken since the start of July, I now live like I'm on a diet, the Livestrong website gave some great advice. Also, if you've eaten a main meal in the evening and an hr later you feel like you could eat a scabby goat or you could drink gallons you know it's your body playing tricks on you, though it can make me irritable becuase I live hungry! When I took a higher dose of steroids I did struggle with my emotions a lot, I remember my boyfirend telling me he loved me and I cried for 90 mins! I remember yelling at my Dad and then crying 30 seconds later because I was upset that I'd shouted. I tried to stop taking the steroids in the summer but sadly I couldn't eat at all without them, am hoping when I go to see the Rheumey in 2 weeks we can talk about kicking them to the curb now my other drugs seem to have kicked in. Good Luck :)

  • Okay I have heard of the side effects of prednisone and have gradually tapered since february from 20mgs. I am currently on 2 and experiencing flare symptoms again(2nd time...1st time I had to be raised back up to 15mgs because some symptoms returned)besides the Pleurisy which got me on pred in the first place.

    But my question is, why am I the lowest weight I've been in my adult life and haven't gained any weight with prednisone at all? I don't know about the osteo but I do take vit d supplements because it was low prior to the use of pred.

  • I have been on prednislone for 18 months, 30mg for about 4 months then I have come down slowly to 2mg daily now. It was the only drug to get on top of a massive flair. Yes I put on weight, about 2 stone but it has been dropping off steadily over the past few months at last! I was happy to accept the side effects in exchange for the pain relief and the facy that may face had ballooned , my hair was falling out etc etc! My consultant promises me I will be off the steroids soon. I just want my life back- sick of the tiredness, can't retain information any more, misread things, forget things and everthing upsets me!

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