After six weeks of really struggling, my GP finally agreed that I could have yet another course of steroids.
I feel like a new woman!!! I can stay up past 7pm, my joints and chest don't hurt so much, the ulcers and rash have calmed down and my hair isn't falling out as much. Oh and i have rediscovered my brain!
However when I explain to my specialist how much difference the steroids make and that I have probably had 8 courses in the last year he says that I can't stay on them permanently and that he wants me to try methotrexate on top of hydro and mepacrine.
I know steroids have their side effects, irritated stomach, sleepless nights, weight gain but they are nothing compared to the way i feel. I also thought that methotrexate would only help my joint pain.
I just wondered how many of you are on permanent low dose steroids?
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tiredmum
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Hi, I too have been on steroids for over a year now, and l also take hydroxychloroquine, but they are reducing the steroids now, and have just started methotrexate a week ago, They said l had to come off the steroids as it was ruining my bones, I have SLE and they seem to think that the steroids have caused Osteoporosis , I too dread coming off them as l dont want he pains back, biut they say that the methotrexate will help, combined with Hydroxy. and tramadol. Will let you know how l get on in a few weeks. Hope all goes well for you. x
I have been on 10mg steroids for 2years now with burst of 30mg when my chest is bad, I have SLE,COPD and i'm a diabetic.Because I was on a very high dose of steroids at the start of SLE (and still am sometimes),thats what gave me diabetes.
I agree with you that they are a great drug, but I don't know if they are worth the side affects.I did try methotrexate but it did not agree with me.
Hi and yes l am on calcium and vit D and also folic acid. on y second week of methotrexate and so far no problems, but it is early days yet. I have had my steroids reduced a little and l am suffering joint pains, not very bad but hoping they wont get any worse. I do hope if you get put on methyotrexate, that you will be fine too, Good luck. Keep well.
steroids are briliant i have been very intolerant of immunosurpressants like methotrexate but steroids have awful side affects i have sever osteoporisis, i now have adrenal innseffency so cannot produce natural steroids of my own so will be on them for life, they increase cholesterol causing heart disease they also cause ostoenecroses (Death) of the joints often hip it often bylateral ( both side) so hip or other joints need replaceing. they cause cataracts, and glaucoma. they come with as many problems as the solve your consultant is right to get you off them if possible or as low a dose. steroids are life saving too. i would be dead from the lupus without them.
if the methotrexate doesnt work there are other drugs you can try im on cellcept now and it suites me.
good luck hope you find a drug cobination to suite you. it can take a while be patient take the steroids when needed. but at the lowest dose to manage your disease.
sorry i dont mean to scar you but your consultant is trying to avoid long term disability either from the medication ot the SLE tough one i know when it hurts here and now
Hi. Have been on 5mg of prednisolone for 5 years, with various increases to combat flare ups and infections. I would take the steriods over any of the other meds any time. all others metioned I have tried and the side effects have hit me hard. Worst was Gabapentin - hallucinations, green men, naked shoppping!!! Well, actually, I asked my daughter to take me shopping at 3am, and yep I was naked at the time!!!
So give me the slight weight gain, dodgey tummy and itching...
Highest does of steriods for an attact was 80mg for a week intraveniously, the re adjustment after and coming down in steps was the hardest part. But I would still take that over all the others.
Remember - what works for one lupus patient does not work for another, everyone is unique and an individual and lupus attacts in many ways and forms to different people, it is a case of trial and error until you fine the right combination for you. x
Hi, I've been on 20mg/day for 7 years, anything bbelow that is joint pain, cough, ect. Yes weight gain and all the other side effects. Currently waiting for Rutiximub funding. Have burst of steroid infusion every couple of weeks. Never tried the methotrexate but had 4 sessions of cyclophophate, that helped a little.
Hi, I've been on steroids for the past 12 years, (well apart from 13 months when I was off all of my meds) with the dose varying from 5mg - 60 mg per day. Have also been told that I will remain on a maintanence dose for the rest of my life, so not too sure why they are saying you can't stay on them long term. I have the usual side effects of weight gain, thinning hair (when on high doses), heartburn (if I don't take the omeprazole) and disturbed sleep, but that compared to painful joints and bleeds into my lungs it is a small price to pay.
Having said that though I do prefer the immunosuppressants I'm on as I don't get any side effects really, biut I do appreciate that I can't lead a normal life without them.
Sorry to sound so ignorant but is methotrexate an immunosuppressant? Have not come across that one, I take mycophenolate and the combination of both works for me along with everything else I have to take to protect by bones and stomach, etc.
I hope that helps and good luck getting everything sorted out.
wendymd
methotrexate is an immunosurpressant and cellcept and mycophenolate are the same drug
I have been on steriods for 8 years, highest dose was 20mg lowest was 5mg- I currently take
7.5 mg Prednisolone
400mg of Hydroxycholorquine
200mg of Azathioprine
at night I take
10mg Amitriptyline
25 mg of Pregabalin
First thing in the morning
Lansoprazole 15mg
and to keep me sane I also take 20mg of Fluoxetine
Long term my consutant would like to see me off the Steriods (Prednisolone) personally I do not think this will happen- I will probably get to 5mg but I think I am a lifer. As someone commented earler- I know my body and am sensible enough to realise that a low dose of steriods will work better for me than very high doses when flaring. I also take over the counter Calciun and vit D supplents and I have a weekly Alendronic acid (70mg) tablet- basically industrial strength Calcum.
Over the years I have put on weight but have combatted this by diet and jogging- exercise does not trigger a lupus attack, if you are sensible and listen to your body you will be OK. Excersing is also good for your bones- be sensible and look after yourself.
Prednisolone is a like a wonder drug to me and wish i could take it all the time because i feel really well when on it but realisticly realise you can't stay on it long term. My doc only perscribes it when i am in a flare i usually get a 1wk course the rest of the time i try to listen to my body by planing and not overdoing it ,because i have a low grade fever most of the time am used to it but flares happen quickly if i over do it and last wks if i dont have prednisolone .
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