I'm on 12.5 mg predinosolone and I tried to reduce it to 11.25 as per Dr's instruction. I didnt have any symptoms for a week after taper and then again the inflammation in eye ( uveitis) came back . Should I go back to my original dose of 12.5 ?
Can anyone suggest a better tapering schedule?
Many thanks
Prednisolone should be tapered very, very gradually. My regime from 10mg per day was to reduce by 1mg per day per month. As we all react to vasculitis differently, we also react to medications differently, and my body didn't take to reduced steroids, but that was me. I wouldn't make decisions like this on your own, and would get in touch with your consultant or their specialist nurse helpline, to discuss this. Good luck.
What is more to the point - the reason you need the steroids must be cleared out first - and the uveitis was obviously still very active. One patient on our forum has uveitis regularly and is given a much higher dose of pred short term - maybe you need more, not to taper yet.
Thanks PMRPro . I'm also on immunosuppresants for 12 weeks now and things were stable. So that is why the Dr asked to taper.What taper schedule is generally recommended?
Yes, but WHAT immunosuppressants? Not all of them will work for uveitis.
Oh sorry . It is azathioprine and cyclosporine- 100 mg dialy ( each)
The mainstay of management of uveitis is corticosteroids - another option may be biologics, the TNF-inhibitors are often used. Aza and cyclo are used as steroid sparers - but they don't always work immediately or perfectly. Pred works for a wide range of underlying causes which it is the primary medication and then the sparer used may depend on the patient a bit - as with all autoimmune disorders.
This is a bit heavy maybe but is a good explanation of what is used
jamanetwork.com/journals/ja....
If you weren't at a particularly high dose of pred then you don't have as much margin for reducing and if the underlying cause of the uveitis is still active maybe you are already at the limit. Doesn't mean you won't get lower - just not yet.
Ok many thanks. So to resolve the immediate issue, if I go back to my original dose of 12.5 mg , things shoukd return to normalcy is my expectation. Is this correct?
Also please point me to a recommended tapering schedule which has been recommended by others.
Over on our forum, PMRGCAuk, we have a few slowed tapers which make it a bit less uncomfortable though after only 3 months it shouldn't be too bad for you, A basic rule is never more than 10% of the current dose - at this level 1mg is reasonable at a time. And we say not more than every 3 weeks, you often need that long to be sure the new dose is still enoughm though a lot of people try 2 weekly and are OK. After about 7mg your adrenal function will have to wake up and take over from pred - but after only a few months that should work well.
I hope you can see this - I always post so everyone can see so my DSNS link will be visible. If not, just add us to your list of communities.
healthunlocked.com/pmrgcauk...
Hope they help - if you have problems. just ask me.
I’m having exactly the same issue. I have been on long term prednisolone previously for many years and successfully got off of it so I know it’s possible!
After 20 yrs remission my TAK flared and I also now have Eye issues Uvetis/Scletis. I am down to 3mg of pred and struggling to go lower. After reading PMRpro advice and read the link I can see why I’m struggling and remembered my previous taper. Even though I’m going slow I wasn’t going slow enough! Do read the link as that is how I did it before. I also listen to my body. Any issues I stop and stay on that dose for a bit longer. The last 3 mg is that hardest for me and I’d forgotten that. Good luck.
I was on 90mg at the peak - like eating smarties. After infusions of 2 * Rituximab and cyclophosphamide, I was tapered to zero over a period of about 4 months. I was pretty glad about that as I used get poor sleep, hot sweats and uncontrolled eating urges. Since then over approximately 2 years I have had 6 monthly infusions of Rituximab, I am classed as in remission with no further infusions planned. I now have to take a statin, blood pressure med and low level antibiotic for their maintenance impacts.
At the peak my resting heart rate was over 80, it is now just over 50 not bad for someone in their late 50s. How did I get there? A lot of exercise daily and a diet high in vegetables, fruit and fibre.
I’m afraid slow and ready is usually the best way and your doctor is the only one who can make the call. May need to wait a little longer before starting to taper, it’s not an exact science by any means. I’ve tapered a few times and it’s always taken longer, and been much more gradual, than I had hoped but it’s worth being patient. Good luck.
Hi . maybe just drop one tablet off each week, get more advice ❤️
Has anyone remained in remission after initial Cyclophosphamine course, without going on a maintenance drug. Doc wants me to take AZA,.
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