Steroid reduction usual symptoms

[twist1]

Hi I am currently trying to reduce my steroids, touch wood things are progressing slowly in a favourable way. Just wanted to ask others that had done it - do you find that your moments of tiredness are more frequent? Does it stabilise itself?

[Hidden]

Yes - but it takes ages. I stopped in March and I am only now beginning to feel 'normal'.

[Hidden]

I have read that it can take up to a year!

[Danielle2419]

I tapered them from 20mg to 5mg I had problems with

Trying to take them down normally I would get withdrawal

Symptoms like muscle pain, joint pain etc but it wasn't to

When I got down to 5mg eventually It was after that the tiredness got worse and haven't really got rid of the issue yet it has got worse I think though

[saranne]

what I don't understand is how would you know that you have withdrawal symptoms which will get better as against the possibility that going to a lower dose just doesn't control the symptoms?

i have spent 3 years reducing very gradually and each time I get to a level where I seize up in pain and we go up again then start the reducing again... last year I was told to give up and stay on 5mg but would love to stop them. Not working as well either now, do steroids stop being effective? Do we build up a tolerance? ,

Do some people have very fluctuating symptoms with periods where they are ok? and some others -it seems from reading blogs here - have symptoms of varying degrees of disability which cannot be controlled by drugs and are continuous?

I think that 5mg is about where your own production should kick in and I read somewhere that going down in 1/2 mg drops can help.

sorry started asking my own questions...

Good luck with your reducing,.. my doctors certainly seemed to expect that they could be stopped!

[madmagz]

Hi I have been on steroids for a while and each time my docs reduce my steroids all my lupus symptoms come back when I get back to a certain level it has been noticed every time they try it. One of my friends however, has reduced his steroids and started taking Manuka honey - one teaspoon each morning and has successfully managed to get down to a maintaining dose of 5mg on steroids and is very well with hardly any symptoms from his lupus. So good luck,

Madmagz x

[Banchory]

Have been on steroids for 3 years...7mg. Tried to gradually come off them but lupus symptoms returned. Have decided to stay on 5mg as feel much better when on them. Also take Vit D for osteoporosis.

[beckside]

Have been on steroids about 16mths, and trying to get off them. I started on 40mg have got down to 4mg if I go down 0.5mg below this then the muscle and joint pain starts, I wait about 6 days to see if the pain subsides, so far been unsucessful, three times now I have done this but I'm determined. The rheumatologist told me not to bother coming off them but I detest them.

[loopy-lou]

I have been on steroids for 4 years - various doses but as a general rule have maintained at 5mg. I have been reducing slowly by 1mg a month. I am in my 6th month of doing this, now at 1mg alternate days until I am off them completely. I have noticed an increase in debilitating fatigue and mentioned this to my rheumy. He said this can happen while reducing. I do have muscle and joint pains so have taken more pain relief. My rheumy has put up my methotrxate dose. I woke up a week ago and have got energy for the first time in years which so far has stayed. Good luck.

[twist1]

Thanks so much everyone for your words of wisdom. I will perservere and see what hapoens . Fingers crossed

[Diagnosed2012]

I started on 60mg prednisolone a day and could hardly sleep for the first three months. As my chronic joint pains eased, I slowly went down to 40mg a day and started to sleep an hour or two at night. Soon after,another flare up and hospital admission saw me shoot back up to 60mg for two weeks. When I came off them straight away last August, my skin improved magnificently and I've since gone back to a more normal sleeping pattern.

[jennywren444]

I have been on steroids for 3 years. I've reduced from 40mg to 5.5mg and every time I reduce I have to go down by 0.5mg and alternate days for a week or so, otherwise the lupus flares massively. Also, every time I reduce my hair falls out which I always wonder, is it a symptom of steroid reduction or is it the lupus flaring. I'm really really trying to get off them completely, my gp once said that you either die from the illness or die from the steroids, which is kind of extreme but kind of makes sense. I'm 28 and already have osteoporosis. Not good. Good luck and take care x

[Voutton]

Hi I started on 50mg to control the TA but have not been able to get past 30 Took a bad flare so was put on methotrexate which can I say was awful , I was saying that I thought I couldn't cope with them any more but rheumy urged me to stick with it as they can take up to 12 weeks to kick in she changed the format of how I took them and by week 8 I was feeling so much better .I am now down to 25mg steroids and reducing by 2-1/2 mg a mth Before when I got to 20 my symptoms returned so hopefully with the lower dose it will help Maybe if you ask your doc. To reduce them more gradually that may help . I have read that you can feel really awful coming down but then clears certainly my joints got sorer ,It was because of the Temporal Arteritis that I had to go back up Good luck we are all so different but this site is great for getting insight

[Hidden]

Hey everyone - it can be done!

One of the things that was useful for me was that my renal specialist, who I see much more frequently than the rheumatologist now, kept testing for C3 and C4 and anti-dsDNA. If these are showing your lupus is in remission and you still have pain/fatigue (and I did - by the bucket-load) then EITHER it will pass as the effect of the steroids wears off; OR there is something else going on.

For me - it was a bit of both. x-rays showed I have some permanent joint damage which accounts for the pain/stiffness in wrists elbows etc... but the fatigue is slowly getting better. I still have days where I have to go back to bed, and good quality sleep is crucial - but I am NEVER going to take long term steroids again unless I am positively dying.

While I have been so horribly unwell (about 4 years) I have got a bit fat and unfit (understatement). Swimming really hurts but also really helps - so I think I just need to make more effort to get fit. Good muscle tone will support my dodgy joints and getting the natural endorphins flowing will help with pain and fatigue.

Ask me again in another 3 months.....?!

[saranne in reply to Hidden]

well done forgetting off the demon steroids!

But I really feel puzzled now. My anti-dsDNA has been fine for ages - until last month- but I still had nearly all the problems I started with, and seized up when reducing steroids. I have been told I still have lupus even if the bloods ok.and to increase again. RA test only slightly raised so what can the something else be?

Probably no answer and we just have to keep trying to figure it out!

Like you I would love not to take them,my first post was about trying something else and I will ask...soon apt next Wed.

[alanbiochem]

Osteoporosis can be caused by lack of estrogen which is the major transcription factor for all genes that synthesise bone. A low dose 25 microgm/day estrogen should work ie. low dose HRT.