How long on steroids?

[Purpletop]

I've been on steroids for 8 weeks now. Started with 15mg for 2 weeks, then down to 10 mg for 2 weeks, tried going down to 5 mg but couldn't do it, so agreed with rheumatologist to go back up to 7.5mg and have been on 7.5 mg for the past 4 weeks. A week ago I was going ready for going on hols abroad and a flare kicked in, so I raised to 10mg for 3 days, after which I got back to 7.5 mg and felt fine. I'm now about to come back home and my symptoms started again like crazy, so I've increased to 10mg for a short period. I can't get hold of my rheumatologist to ask if that is ok but I had to do something.

I'm worried that instead of being able to taper down while Plaquenil starts working, I only seem to be extending the steroids. Have you been on steroids for more than 6 weeks, say?

[LULU85]

hi hun

I have been on steroids since june. I was on 10mg and only managed to get down to 7.5mg I have reduced them to 5mg this week but im struggling.

Sorry im not much help just wanted you to know your not alone

xxx

[Purpletop in reply to LULU85]

Thank you, phew, it is a relief to know. Every time I question my rheumatologist he is scaring me with talk of immunosuppressants, he is keen to get me stabilised on Plaquenil and low dose steroids rather than anything else. I am too but there is no clear guidance on how long one could be on steroids before the nasty side effects start... Many thanks again.

[beckside]

Hi Purpletop I have been on steroids since January when I was diagnosed with Lupus with lung involvement. I started off on 40mg and I am currently taking 10mg. When I reduce them I do get achy for a few days then it passes off. Maybe it might help if you taper more slowly say come down by 0.5mg- 1 mg. Good luck and let us know how it goes.

[MandaM]

Yes i've been on daily steroids since March 8th 2006! It is important to take down your steroids as prescribed otherwise you system will be affected, something to do with adrenaline. It's fine to go up and down on your dose as long as its done in stages. As i've said before i refuse to increase my 5mg dose as after being on steroids for over 6 years now i find that they no longer give me that well feeling but make me a nasty person to be around. The only time i will agree to change my mind is if i HAVE to increase if my transplant starts to fail. Hope things go well for you Purpletop.

[loopy-lou]

I have been on steroids for three and a half years without a break. As MandaM mentioned I too have been told it is very important to decrease the dose very slowly. Can you not try ringing your rheumy nurse at the hospital or even your GP. (Even if you are away still) When I flare badly the dose can be put up to 40mg then decreased slowly. I hope you can get hold of a medic to find out what you need to do. Good luck. Take care.

[Purpletop in reply to loopy-lou]

GP won't interfere, apparently, but I have already started to feel better after increasing to 10mg this morning. However, my left eye now feels like it is covered by a film, I keep rubbing it to remove it but there isn't anything I can see there, I wonder if the steroids cd cause it? I could scream! If it isn't one thing, it is another, never ending, I'm fed up.

[Lulabelle]

I have been on steroids at very high doses, life saving doses, since Oct 2010. Oct 2011 i was weaned off them and remained on MMF (suppressants). My blood work has been getting better and better and so has my kidneys. They weaned me off the steroids 15th oct 2011 and that Dec I picked up a viral chest infection, had another Lupus flare and was put back on 20mg steroids. i am now on 5mg per day as maintenance. i commenced plaquenil in Sept at 200mg per day. If i can tolerate this and I imagine this will be increased when I see my Rheum in Nov, it is his intention to wean me off the steroids. Hopefully this will work. I will be on the MMF for a further 3 to 5 yrs. If the lupus is responding to the steroids - it maybe wise to adhere to them until such time in the future you can come off them without any bad affects.

lulabelle x

[Lupylass]

Hi there

When I was first diagnosed I was on 20mg, and gradually tapered down. Each time I reduced my dose I would have what felt like a flare within a few days to 2 weeks following my reduction. I mentioned this to my rheumatologist and she said this was normal. If I just 'sat it out' the symptoms did subside.

When I was first diagnosed, even with the steroids, I would say it took 3 - 6 months for the Plaquenil to work, and actually a good 12 months for it to be fully effective. So for the first few months I had so many weird symptoms, I didn't know if it was lupus causing them or the drugs! But don't be frightened to ask your GP if you have new symptoms - they may be able to help with your eye or contact the rheumatologist on your behalf

I was on steroids for 19 months. The rheumatologist told me I might never get off them, and talked about putting me on other immunosuppressants, but I successfully got off the steroids by slowly reducing under instruction. These days I just take Plaquenil and have lost 3 stones since coming off steroids. I feel great!

Hang on in there. You're on a journey of ups and downs. But hopefully with a good relationship with your doctors, and a bit of trial and error, you will get there. Feeling better is the ultimate goal! I hope you get there x

[Chapter]

I was on steriods last year for 3 months, working my way from 50mg down (3 times) but had a lot of trouble getting past 10mg. I was not feeling very good at that point and rheumatologist suggested that Plaquenil must be close to kicking in so I should try wean myself off as soon as possible as I may have been getting side affects from steriod. I got down in 10 days - which I wouldn't recommend (rash slowly disappeared over next month as Plaquenil finally started to work, and some of my other symptoms eased up. It did take about 6 months for Plaquenil to really show it was working but it made a big difference. Now Rheum has decided that I should cut dosage and see if I have a flare then will know for sure if it is doing anything for me. I am confused now.

[tiernan]

I have been on steroids 11 years now just got diagnosed when I was 8 years, they seem to keep me on them weather it has been 60mg r 10mg just to keep it under control so it won't flare up.

[LloydE]

i was on prednisolne for nearly 20 years. Started on 40mg daily for a few years (as i had very severe symptoms) then gradually lowered the doseage. i could only get down to 10mg for a while, every time i went lower i felt worse, so kept on going back to 10mg. My doc told me when i was trying to reduce the dosage, that if i started to feel worse, just up the dosage back to 10mg for a week then try lowering again. This did not work for me (at that time) as every time i went lower then 10mg i felt awful, all the symptoms returned. i stayed on 10mg for about 5 years before i was able to reduce the doseage without the flare ups.

However i am now off steriods completely and have not have a flare in a few good years. There is light at the end of the tunnel.

[Raspberry]

I have been on prednisoline since 1998, varying dosage, i cannot take any immunosupressants (adverse reactions) so steroids are my only option I take 12mg daily and cannot get below this but I would rather take these than even with the side effects!!

[jennyhe]

I have been on steroids for around 5 years now you do need advice on how to wean down safely I am now trying to get down to 5 instead of 7.5 but doing it very gradually hope you can get some advice

[vonnyrad]

I have been on Prednisolone continuously(i.e. without a break) for 30 years, since the age of 21,dosages ranging from 30mg to 5mg, along with Azathioprine, and for 9 years, after the birth of my daughter, I also took Cyclophosphamide daily.The lowest dose I have ever taken was during my two pregnancies, when I (unbeknownst to my consultant!)decided to drop to 5mg, which I did by dropping a mg a week from 10 to 5, feeling it would be safer for the baby, if I could cope.Perhaps it was the immunosuppressive effects of pregnancy, but I felt fine on 5mg at that time.However, as I experienced a massive post-partum flare-up , I had to go up to 30mg daily for a long time, after inpatient treatment with i.v. methylpred., i.v. Cyclophosphamide and plasmapheresis.When ever I have tried to drop my dosage subsequently,, even very slowly, say 1mg every two months, I get to about 7.5 mg and then get really bad symptoms, whether they are due to lupus or are withdrawal symptoms it's hard to say, but my body definitely NEEDS Pred now, as I think my adrenal glands no longer function.On a few occasions, for various reasons, e.g. having to fast for investigations, or gastro illness, and I have not had my Pred I have had the most awful withdrawal, requiring hospitalisation, involving severe joint , bone and muscle pain, fever, nausea, vomiting, and even loss of consciousness.This can happen within 24 hours of missing the dose.Pred withdrawal is not something to take lightly, obviously the longer you are on it, the more dependent your body gets.I found that even many doctors don't appreciate or recognise the symptoms of withdrawal or its potential dangers, and certainly nurses are not educated in this.My advice would be to listen to your body, work with your consultant to reduce as quickly but safely as possible ( bearing in mind you have only been taking them for 8 weeks so you shouldn't experience significant withdrawal symptoms,)and take the lowest effective dose you can, and while you want to be on them for the least amount of time, they do need some time to take effect.Apparently, 7.5mg is the level the body needs naturally, so you may have to stay at this or a slightly higher dose for a while.Have you access to a rheumatology nurse or number you can ring(some hospitals do this) or could you check with your G.P. for advice?Hope things go well for you.

[Purpletop in reply to vonnyrad]

Thank you for this caution, it is a sobering thought to not be able to get off the steroids ever. I managed to see my Rheumatologist once I got back home and although he agreed to keep me on 10 mg for another 2 weeks, he is insisting that I'm getting off them no matter what after that (gradually, of course). Unfortunately with the travelling back/flying etc my pericarditis is back, so he's changed my anti-inflamatory to take care of that but he isn't convinced that the steroids are helping me and is looking to switch to Methotrexate if Plaquenil is not working yet at the time. I don't know what else to do but follow what he's proposing - and with your real-life experience above, I'm now, more than ever, cautious about asking for more steroids. I know it is trial and error before I get this under control, it's just that sometimes I find it difficult to stay positive. Thank you for your help.

[artemis5]

Purpletop,

I've been on steroids for over a year now, started from 5mg and now i'm taking 10mg/day. Last time I saw my rheumatologist (a week ago) he advised changing to azathioprine becasue he is worried about cummulative side effects of prednisolone (eventhough I feel fine at the moment). I'm not quite happy about switching into a cytotoxic drug but apparently that is a better option than staying on steroids for longer period of time. We also tried taking 600mg of hydroxychloroquine but that didn't help much.

In the end it is your choice but if you can at least decrease the dose then it's probably worth a try.

[lupie_lass]

I was put on steroids in Feb 2008, and told it was just a temporary solution to bump my platelets up. Unfortunately, my platelets did not want to behave themselves. I was put onto Mycophenolate in 2010 so that I could be taken off the steroids...I'm still waiting... I am now also having to take ibandronic acid to stop calcium loss from my bones. Tablets to counter other tablets. It just seems to be a never ending cycle. At 23 I don't want to be on more tablets than my 84 year old grandmother, but I guess some things we just have to learn to live with!

By the way, immunosuppressants aren't all bad. I actually find I have had less colds since going on them, because (I am told) my immune system is working more efficiently, spending less time fighting me and more time on the actual cold.

[Purpletop]

Thank you for sharing. The symptom I am keen to resolve is chest pain and shortness of breath. My heart and lung tests are all ok so my Rheumatologist suggests that the pain must be due to residual pleurisy or pericarditis, although he didn't do any tests for those (and I understand it is difficult to test in the first place). If steroids don't help, which they don't seem to, then which immunosuppressant could? Methotrexate has been suggested to me but from my research I see that it has only a marginal effect on symptoms other than joint pain. If I am to take immunosuppressants, I would like resolve the symptom that bothers me not one that it doesn't.

I am at a loss as to next steps. I feel like going the diet route instead but I'm too coward to do that on its own. But I am starting to read about it and see what I can do in parallel with drugs.

Thank you all.

[tiggergirl]

I have been on steroids since 1992, i am taking 5mg but i put a lot of weight on and i don't think i will ever get off them as when they take me off them i go down hill quick. But the side affects you can get is not so good my bones crumble i have had 3 op's to take 5 disc out the pain is unbelievable but i am so used to it now it's a part of my life since i was 16 years old.