Steroids

[gazzasoens]

Hi all just wondering if anyone else has been on steroids since they found out they had lupus, as I have never been able to come off them.

[Danielle2419]

Since last year june being diagnosed i have been on them i started on 20mg then just after 2 weeks went down to 10mg then in november went down to 7.5mg then from january this year have kept it at 5mg and have never had to take it up, i have not been told that i can come of them yet and dont no if thats whats going to happen but will soon find out.

The steroids are a problem causing so many side effects but they seem to be helping to control the lupus and thats whats the best thing for me.

[mum-two]

I have been on them since I was diagnosed 17 years ago,I have now been told I will be taking them for the rest of my life.I am taking 15mg daily and have never got lower than this although I have been on much higher doses.

They have caused me all sorts of problems including osteoporosis but at the end of the day they are keeping the lupus sort of under control and most importantly me alive.

[gazzasoens]

I've been on them nearly 20 years and am on 10mg every other day, did have osteoporosis but got that sorted but not before I had to have a hip replacement 10 years ago. just had esa taken off me, now my blood pressure is high and am already on 10mg ramipril. Someone shoot me. lol

[steadilymovingforward]

Lol I often think someone should take me out back and shoot me like a lame horse!! Hee hee

[madmagz]

I have had lupus for nearly twenty years and have been on steroids for some of my current flare (two and a half years) the dose has fluctuated from 40mg down to 5mg as I have been better some times than others and the few times I have needed I.V. steroids at the same time as oral steroids when I have been bad enough to be hospitalised I have been on sky high doses. I make sure that I have had plenty of calcium and vitamin D in my diet and now have been prescribed suppliments so that the steroids don't cause problems with my bones later on in life. I do however know of people who take a teaspoon of Manuka honey everyday and they have successfully either had their steroids reduced or in one case I have heard of come off them. I am hoping that when I go into remission again I will be able to be medication free - as I was last time I was in remission (well lupus medication anyway I take plenty of others) thinking positive and keeping smiling, feeling much better than I was so I am hoping that remission might be a possibility again as this flare has been particularly agressive and just like you, steadilymovingforward I felt like I should have been shot on a few occasions. But thanks to a great partner and family and friends I am getting through again.

Chin up lupies don't let this devil get you down, get on youtube and listen to Everyday by Bon Jovi, it has amazing words.

Madmagz. x

[rlupus]

Hi Ya

I have been on them for over 20 years and been told i will never come off them i take anything from 60mg to 100mg daily very high amounts as soon as i drop below 60mg i become very ill i hate taking them but have to keep going with them to try and have a bit of a normal life its very hard with lupus, and chronic obstructive airways disease.

Take care xx

[Voutton]

Although having lupus all my left I have managed to refuse them and cope without them till last year. I had a choice of steroids or go blind, so my heart goes out to everyone that has been on them for years. Like you I cannot get down past 30mg a day so now I'm on methotrexate as well , which is to try and get me down off steroids,One tab now I need another 5 for side effects.All I can say is I am now going to try and come down 2.5mg per month and hopefully I will be able to get off them or at least down to a very low maintenance dose.By the way I also take Manuka honey though not every day , so I will try that and see if that helps I just want to let you know that you are not alone ,and I hate ,hate being on steroids ,but I do love my eyesight Take care and have a good day x

[Jayne54]

Hi I have been on steroids 19yrs and have been told I will never be a le to come off of them I am currently on 10mg which is the lowest I've ever been on but touch wood it keeps my lupus stable but has turned me from a size 8 to a size 16 but hey ho I'm sure your doctors will keep a close eye on you X

[Looby]

Interesting to read all of your comments.... can anyone tell me if the hot sweats (feeling like you are cooking from the inside) which come on suddenly and leave me drenched - are a side effect of being on steroids?

I've now developed cellulitis in both legs, and this is especially painful around the ankles...it is making sleeping something of a trial because I cannot bear anything touching them! I'm hoping my GP will be able to help, but he makes jokes about the symptoms(I think he maybe does not know about this particular auto immune condition....) to put me "at ease" I suppose, but I do so wish he would take me seriously!

I've tried decreasing the dose of steroids (currently on 15mg/per day) but this has not been beneficial - so being tubby is preferable to being a pain-racked zombie.......

[gazzasoens]

Hi Looby how long have to been diagnosed with S.L.E. My night sweats aren't as bad now but I was diagnosed 20 years ago. x

[Danibelle]

Hi Looby,

I have horrific burn ups. It just feels like I can't control my temperature at all, takes ages to try and cool myself down!!! It is definitely steroids and in particular prednisolone, as my friend who has another type of auto immune has the same side affects.

Does anyone else urinate in excess?! I literally need to go to toilet every half hour, which I'm able to live with during daylight hours but at night it's really disturbing.

Thanks

Danibelle

[mirabel]

I have just been given a large dose of steroids to stop my loss of vision & have to continue them for some weeks. So I'm waiting for the side effects. Trouble is I may well develop diabetes as there is a strong family history. Loss of vision started over 5 years ago & still no definite diagnosis of lupus. However the consultants are getting together to discuss the problem - eye consultants (2), rheumatologist and neurologist. I think I am making their brains work overtime and getting 4 consultants together is quite something & I appreciate their care.

Next step is a MRI head scan so who knows what they will find. I will try to enjoy life as it is

without too many expectations but it does look as if I will no longer be able to work because of my vision.