Help please - just can’t get off steroids and flares return even more acute every time I try - is it steroid rebound?

[doggit]

I started on 20mg of prednisolene in September and have been trying to get off it ever since. I taper down and down and then the flare on my face and neck overwhelms me and all they can suggest is upping the dose. Has anyone heard of this phenomena called ‘steroid rebound’ where every time you try to taper down the flare comes back far worse every time. I am in despair would really like any feedback. Thank you . Doggit

[PMRpro]

How are you trying to reduce? After this long you will need to go very slowly - both to avoid the steroid withdrawal effects and to allow your adrenal function to return comfortably.

Have a look at this:

healthunlocked.com/lupusuk/...

Down to about 7.5mg you shouldn't have too many problems but some people have to take it gently from 10mg, not more than 1mg at a time. You only been on pred for just over 6 months, it shouldn't be too hard, but you probably do need to take 3 weeks for each reduction.

[doggit in reply to PMRpro]

Thank you. Just got to 4mg, bad flare told to go to 8mg another even worse flare and then 15mg. That has worked but had taken me weeks to get down and 24 hours to loose it all.....love to get rid of weight gain and bloat and have cataracts cortisone has produced sorted!

[PMRpro in reply to doggit]

Weight gain: cut carbs, especially processed ones and added sugar. That will also cut salt but that also contributes to fluid retention with pred - and water weighs too!

[Brussels]

Hi,

Are you on any other medication to treat your Lupus? Prednisolone shouldn’t be used long term in Lupus if at all possible, there are other drugs that are more effective.

[doggit in reply to Brussels]

Trying to tandem with Hydrox -

[Jmiller623]

Hi doggit! SLE here with prior 6 mo steroid taper. Your situation sounds EXACTLY like mine. I was also bridged to Plaquenil with steroids. However, I was started at 40 mg. Everytime I went below 20 mg, I’d flare right back up again. I got so tired of the roid bloat, I just made myself taper and stopped once I got to 2.5 mg. I didn’t have any 1 mg tabs. Not advisable but I just couldn’t take the side effects anymore.

I was quite miserable for about 1-2 months after. Went to endocrinology to check for adrenal insufficiency since my taper was so long. Adrenals recovered nicely after 6 weeks of being off. ACTH and cortisol levels were perfect.

I noticed that it took Plaquenil a good 6-9 months to really give me full benefit. I hope you find yourself in a similar situation soon. It is really really hard to get off of steroids for us.

Some say they have successfully tapered. Some stay on low dose pred <7.5 mg forever. I chose to stop and tough it out. Now, when things get bad, I just take a 6 day solumedrol taper pak. Never ever will I go back on steroids for longer than 2 weeks unless one of my organs is about to fail.

I really hope you find some relief soon! Hang in there. Sending virtual hugs your way. ❤️

[doggit]

To find not alone in this struggle so heartening. I was horrified after struggling so long to taper to be simply told to go back to 15mg. So depressing for me so easy for dermatologist to ‘sort’ out patients hideous flare. Short term dilution for them and more of same for us! The thought of getting rid of weight and bloat spurs me on but those face/eyes puffed shut flares for days is scary but worth it if they go without resort to more steroids makes roughing it out a goal to reach. Thank you.

[miccika1]

As others say you probably need more meds, people spends sometimes years figuring out the correct cocktail so you need to be patient and slowly try different ones until you find the correct meds and dosage. And who knows maybe 20 mg is the correct dise for you if you can't control the disease in any other way. It took me two years to lower my prednisone and i would feel each 1 mg reduction... Plaquanil sometimes takes time to kick in. How long have you been on it and what dosage? I do know this is the medication that helped me the most and it has much less possible side effects compared to prednisone.

[heatherevans28]

It seems very fast to be honest as you have only been on them 8 months. I wouldn't think you would have rebound yet, but withdrawal can be difficult as soon as you are on them longer than 5 days. It normally causes an increase in symptoms, without a clinical flare, so needs to be done slowly and with care.

When I lowered my dosages I felt rubbish for a week or two and my symptoms increased considerably. I learnt to ride it out, let my body adapt to the new dosage, and then my symptoms would settle. It is unclear from your post what you mean by the term "flare". Is it a flare that is seen in your bloods and physical swelling in joints etc? Or an increase in symptoms without any spike in your bloods?

If it is a clinical flare then it might be that your rheumatologist needs to introduce other medications or give the hydroxy more time to work before you taper. If it is an increase in symptoms then you may need to ride it out and see if it settles in a week or so. This is harder than you would think, but is totally worth it to avoid the long term effects.

Alternative medications (hydroxychloroquine in your case) can take months to build up in your system. They should then "take over" for the steroids in controlling your lupus activity. It's then much easier to taper the steroids. Again, I'm unsure when you started on hydroxychloroquine and whether it is having an effect on your bloods and disease control yet.

I've personally been on steroids for 6 years because we had to try a few different medications before we got MMF to work. The MMF took a full 6 months to have any effect on my bloods and to stop my kidneys being damaged further, so I was on high dose steroids for a long time at a young age. I tapered by 1mg and then by half a mg at a time. I now have adrenal insufficiency so I am stuck on steroids for the foreseeable, but this is not common at all.

Please do not worry about insufficiency or rebound, at this early stage in your steroids journey. Most people come off them slowly and steadily, with periods of symptoms flaring and severe discomfort as they taper.

Slow and steady really does win the race for steroids, but is 100% worthwhile.

All the best x

[heatherevans28]

The only context I know the term from is in skin conditions. A number of studies have been published about it in that context. The skin gets used to higher and higher dosages of steroids or steroid creams (almost "dependant"), so when you stop the steroids the rash (or skin complaint) can reappear temporarily and often it can be worse. I've not heard it used for systemic lupus though x