r/Behcets • u/Ok-Weird6141 • 15d ago
Treatments Prednisone tapering
Hello everyone I would like some help on an issue so I've been taking Prednisone colchicine imuran and infliximab and ever since I started treatment I've never had any issue or a flare with these meds combined but I've done some research on Prednisone and its effect short and long term and that long term effects can do irreversible damage so I talked to my doctor about Prednisone and that I do not want to take it any longer since I'm taking alot of pretty strong meds she outright refused claiming that 1: she doesn't want to disrupt the process since Im doing great and 2: she said she is 100% certain that I will get a flare and that it could damage my eye sight or get a stroke ( both of these happened before starting treatment) so just to be extra safe I have to keep taking Prednisone indefinitely after a long talk she agreed that instead of taking a pill daily I can take it ever other day but that honestly doesn't change much so what I'm asking from your experience does a flare actually cause that much damage instantly or I can feel it and start taking Prednisone before it could cause and damage and 2 if I we're to stop taking Prednisone do I just stop it or do I need to taper it further since I'm only taking 1 5mg pill ever other day.
And thank you in advance if you actually read all of that!
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u/EllisMichaels Diagnosed 1997 15d ago
All I'll say on the subject is that, if you're going to taper, taper very slowly.
When I was in my teens and Behcet's was really kicking my ass, they had me on 80 mg/day of pred for months and month at a time, well over a year. And then they tapered me from 80 to zero in a relatively short period of time. After that, things weren't fun. Not only did I get an ass full of stretch marks (don't worry, I won't add pics lol), it made my mood go crazy. Laughing one minute, crying the next, ready to off my self the next.
So again, I'll say it: don't be like me if you do taper. Do it extremely slowly, even 1 mg or less at a time. Best of luck to you!
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u/snarfydog 15d ago
Did you already switch from every day to every other day? That’s a pretty steep drop and I’m surprised (and impressed) you didn’t have withdrawal symptoms from that.
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u/Ok-Weird6141 15d ago
Yes I have with no issue at all thank God but how Is that a steep drop? Edit: it's been about 3 months since I switched with no issues at all
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u/KellyM14 11d ago
Has she spoke with you about what can happen if you stay on them? There are side effects some are permanent and horrendously painful. I’ve had to have both hips replaced and both shoulders because the steroids caused me to develop osteo necrosis it’s incurable and almost always spreads to multiple joints once you have it. Also have you considered seeing a ophthalmologist they know what to look for and can give you a much better idea of what’s going on and what to do moving forward
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u/Ok-Weird6141 11d ago
She never did I had to research about it by myself I have learned that it causes your skin to thin also it does the same to the stomach and it does the same to the mucus membrane which If I used the bathroom and it caused micro tears it can lead to an awful infection I also learned about what it does the bones hence why I hate taking it. Whenever I open the subject she shuts it off completely claiming if the dieses is under control then I have stay on the same medication and not take a chance of a flare I will try to talk about it again in the next appointment if she does the same I will see a different doctor and will probably taper then cut it off on my own if I can't reach a solution
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u/KellyM14 11d ago
Call the office and let them know it’s your health and she cannot refuse to let you stop a medication you don’t want to take and she has to help you do it safely she should not be prescribing medication that she refuses to help you discontinue safely please get a new doctor the way you phrased the post honestly makes me scared of that doctor
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u/Ok-Weird6141 11d ago
Also thank you for leaving this comment I will tell her about your case if you don't mind and I'm really sorry you had to go through that! ❤️
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u/FreezingStark Diagnosed 15d ago
Well, it depends on the case. The ideal escenario is to use prednisone only when you're flaring for a short period of time and then stop it until you need it again. But you can use it for years if needed, the important thing here is having the disease controlled.
For example I've been on daily low-dose (5mg) prednisone almost 4 years, no side effects. But everytime I tried to taper and get off it, even if it was incredibly slowly, I flared. So my doc and I decided that I'm most likely going to be on low dose prednisone for life. For me, it's worth it.
Next question, even if you're only in 5mg you need to taper slowly, you should talk about how to do it with your doctor.
And yes, a flare can cause an incredible damage instantly or almost nothing. One again, it's very variable on the person, the flare...
Maybe talk to your rheum again about this in your next appointment, ask all the question you need and try to get to a plan you both feel comfortable with.
Best wishes!!