Prednisone withdrawal

[mattf1977]

Hi I'm looking for some advice. I'm experiencing pred withdrawal and wanted to know if I should be concerned or just ride it out? And if I ride it out how long it will go on for?
I have just spent 6 weeks in hospital with a complicated flare on my terminal ileum, on a stricture with an abscess. They tried to get me in to remission with a high dose of IV steroids for 5 weeks with the odd day or two on pred, it flared right back each they did this and put me back on IV.
Then in hospital my bowel perforated and I had emergency surgery to remove the diseased section. The surgery was a success although very traumatic.
They kept me on IV steroids for 3 days, then on to 20mg of pred. The doc wanted to put me on a fast taper so to help me heal from surgery so they have dropped it by 5mg every 3 days. I just finished my last 5mg 3 days ago and since last night I feel headachy, have flu like symptoms, nausea, loss of appetite and mild joint pain. I wouldn't say they are extreme symptoms. If it stays like this and it is safe I could easily bare it, I just generally feel crap.
Any advice is most welcome.

 

[mattf1977]

Just in case anybody does read this it's 5 days since the last 5mg pred and since last night the symptoms seem to have pretty much gone. I just feel tired and have some slightly achy joints.
Just thought I'd say for future info if anybody needs it.

 

[Jennifer]

Thanks for sharing mattf1977. Sorry you didn't get a response earlier. There seems to be quite a large number of new users and not enough time to respond to everyone in a timely manner.

How are you healing up from the surgery? I know they take people off steroids pretty quickly for surgery. All that can really help is a slower taper but then you run into complications with healing (that's why my surgical site didn't heal right and got infected). Its a tough call. I'm glad you're feeling better though.

 

[Thermo]

Sorry I didn't catch this sooner I would have responded. That is a really quick taper! Although I have done quick tapers myself and they are not fun, I usually get a lot of cystic acne when I taper quickly which is how I know it was quick. You are still in the adjustment period you need to watch stressful situations for a few months and try to get some good exercise and sleep. The only real warning signs you should watch out for are an inability to lift yourself out of bed in the morning. Also if you can't lift your arms to shampoo your hair, everything else is pretty much a side effect of getting off the steroids. Good luck!

 

[Avw]

I've had to do very rapid prednisone tapers before as well, and experienced intense flu-like symptoms... I actually compared it more to heroine withdrawals (or at least what I think heroine withdrawals would feel like... pretty miserable). Of course this was all before I knew of the risks to the adrenal glands, now that I am aware of these I will definitely be more careful with tapering. To answer your question... I always waited it out and it subsided within a few days, but you know your body better than anyone, and if you feel like something is off then I would definitely get in to see your doctor.

Best of luck and hope you get to feeling better soon!

 

[mattf1977]

Hi, thanks for the responses. All the flu like worrying symptoms seem to have gone. I just have a real lack of energy and my legs ache a bit, joints and muscles. I'm pretty sure this will get better over time and is partly also due to the long hospital stay, surgery and weight loss etc.
As for the surgery everything is healing good, stoma is working well and no crohns symptoms. One frustrating thing is that whilst on the pred I had a good appetite, even a few days after surgery and I had been eating really well. Since the withdrawal symptoms my appetite has gone. Not sure if it will come back as my body adjusts, I hope so as it will help with my recovery and allow for the reversal sooner.
Thanks again for the advice and interst.

 

[Thermo]

How long has it been since surgery? You are going to be all over the place for the next few months, I didn't get a real appetite until weeks after surgery. I was even nauseous for weeks as well. Have you made a visit to the stoma section yet?

 

[mattf1977]

4 weeks from surgery now. I have moments where I have a bit of an appetite, more in the morning than later in the day.
I'm in the uk and the stoma team have been brilliant. They visited every day in hospital and I have seen them 3 times since coming out. They give lots of advice about eating and diet etc.
As you said I think things just take time.

 

[Thermo]

Stay positive and don't get discouraged with small set backs, I am 8 weeks out and am still taking it day by day with random issues here and there but for the most part it seems to get better after week 6.