Steroids - worth a try?

When I got my diagnosis of SLE/Sjorgens I declined steroids as I was worried about side effects. I opted to see how I got on with 400mg Hydroxychloroquine alone. I have seen improvements with brain fog and skin rashes. I still have that constant deep down fatigue that I think only my fellow lupies will understand, but I have less days where I need to stay in bed. My neutrofils have remained below normal and have dropped again slightly at the last count. I still wake with stiff joints and experience pain in my hips, but I have not had any significant inflammation of the joints and tendons. But I wonder if I might feel better with a course of steroids. I long to feel a bit more normal than I do. That contant feeling of being hungover is getting me down and I am dreading the autumn and winter. Any thoughts or advice?

19 Replies

  • Steroids are like plaster - to be used in case of emergency and for short periods of time. In your case you could try a short course to see how you improve but in the long term I'd go for immunosuppressants. You can start those at low dose and go from there. I wouldn't use steroids for anything other than calming down a flare.

  • Thanks Purpletop. Very helpful.

  • I've been using short courses of prednisone periodically. I sometimes use it when I travel, so I can have the energy to carry on. If you are lucky, it can tamp down your immune system so that you feel better after you stop it. It is dangerous to use them for a long time, but a short course at relatively low doses can be helpful. It takes a long time for Hydroxychloroquine to kick in completely, so if you are just starting Hydroxychloroquine, Prednisone maybe able to kick start your recovery.

  • Thanks AnnNY, I will talk to my GP on Monday. X

  • I've been in a similar place, madlottie. Hope this helps:

    After 2 yrs on 400mg daily hydroxy only helping 'so much', my rheumatologist & gp let me try a 4 week 10mg prednisolone taper (I dropped 2.5mg each week until my tabs were finished) which did reduce the symptoms hydroxy hadn't reduced.

    After trying 1 more of that sort of pred taper, to double check my response was positive, rheumatology offered me the immunosuppressant mycophenolate, which I began last January at 500mg per day, increasing within 2 months to 1000mg. Once I upped to 1000mg myco per day, Myco helped even more than pred, so this is what I'm still on, + my usual 400mg hydroxy per day + up to 3 of those 4 week 10mg pred tapers per year for times when my symptoms flare despite the daily hydroxy+myco. E.g. Earlier this summer I took the first proper holiday away in many years, which sparked a neuro/cerebral flare that required one of those 4 wk 10mg pred tapers to settle. Now I wish I'd done what annNY does: start the pred taper when I set off on holiday! Anyway, thanks to that short pred session, I'm now feeling almost as good as I did before the holiday....

    So, that's a specific example of how this lupus patient has incorporated pred & myco into my treatment plan. And, like you, I do so vvvv well remember how v anxious I felt back when I was asking the question you've posted here....I too was v concerned about daily steroids (I'd seen my husband on them for decades due to crohns).

    Hope you'll let us know how you get on


  • Thank you Barnclown, this is really helpful. Will keep you all posted x

  • Hi Madlottie

    Short courses of steroids are always worth trying as they could help with your fatigue.

    Managed properly low dose steroids daily are an option- for some it can be the only treatment option and there certainly not dangerous!.

    Hope you feel better soonX

  • Thank you. Really helps. Will keep you all posted x

  • My initial treatment was 40mg steroids and 400mg plaquenil. The steroids quickly improved the joint pain but as I tapered down to 5mg a day things gradually came back. 6 months on now also on azathioprine and things seem to be settling. It's difficult as I don't like the side effects of steroids but I'm also nervous about stopping the 5mg a day in case problem return. The plaquenil took a long time to kick in and think I'm now finally see results. Maybe try a short course and see how you get on.

  • Thanks Pennypug, do you mind if I ask what side effects you experienced with the steroids. I have an appointment with the GP on Tuesday to discuss a short course of steroids.

  • Hi Madlottie

    Good luck with your GP appointment on Tuesday. Hope it goes well.X

  • If steroids are needed they do not produce side-effects; that is how you know if you need them or not.

  • From the prednisolone Iv had the usual weight gain and puffy face, however rheumy has said this will go when I stop them. Initially I had a lot of stomach and digestion issues, this seems to be the norm for me when I start any new meds and went after a couple of weeks. The benefits of the steroids far outweighed the side effects, for me, but everyone is different.

  • Madlottie when I have taken a short burst of steroids before for asthma issues, I have not had as many side effects. Think this time is worse because I've had to continue with daily dose rather than stop.

  • Thanks Pennypug, maybe a shortcourse will help me out. Appointment booked.

  • Hi Madlottie. I have just finished a two week course on Prednisolone. I'm off on holiday soon and my GP was happy to let me have a short high dose course to give me some relief and to help me build up a bit of stamina before going. I find that steroids are just about the only med that really gives me any relief but, as everyone else has said, they are a 'sticking plaster' solution to be used once in a while when everything else is getting out of hand. Long term low dose usage can be helpful but the side-effects of this sort of use can outweigh the benefits. I hope your appointment goes well.

  • That is great StephenH. I am going away too so hope my GP is also willing to give a short course. Long term I will try to do without.

  • I love my steroid injections. I never have any side effects . Just go for it. You will be so happy to be pain free.

  • Absolutely Steroids are worth a try!! I've been on and off them since 1979. My maintenance dosage is 20 mg Prednisone. I take other medications for my Lupus and RA, but Prednisone is my mainstay. When I was first dx with this autoimmune hell, I had 3 young sons. The steroids allowed me to live a somewhat normal life. They do have their drawbacks, (anyone want to see the scar from removing my stomach, rebuilding it, and cutting half my Vagal nerve?

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