Really stressed, don't know how to cope?

[Nomis1234]

Hello. I have crohns disease and I also tend to get anxious which is a pretty bad combination. I am scheduled to be leaving next week to work abroad for the whole summer- Under normal circumstances (Where I didn't have crohns and had to worry about medication) I would be extremely excited.

However, I am anxious about what will happen if I experience a flare up whilst I am away- I do have health insurance, but it doesn't cover m for much.

I am also concerned about the medication that I am on. I have been on entocort for 3 months now and the only thing my doctor has offered me is to continue on entocort for the next 4 months. I am aware that entocort is normally only prescribed for 3 months and taking it more than that seriously increases the risks of experiencing terrible side effects like cushing syndrome.

The thought of experiencing side effects that effect my apperance (cushing syndrome) whilst I am away has me really worried- It would ruin my whole summer to be honest. I don't think I would be able to cope with that additional stress under the circumstances.

I really don't know what to do. I am curious to know how others would handle my situation? I am considering taking things into my own hands; coming off entocort and seeing how long I can stay symptom free and then going back on it if my symptoms flare. Does that sound like a good idea?

Any help is appreciated.

 

[Lady Organic]

Is it low dosage of entocort you are on?
i'd fallow the doctors' advice. The risk of getting cushion syndrome is less than getting back into flare imo. and a flare, we never how bad it can return... I dont think its a good idea to stop a treatment without telling you doc. been there, done that, regret it. I imagine your doc doesnt want to put you on a maintenance drug just before your trip because they need close monitoring especially at the beginning?

 

[Nomis1234]

Is it low dosage of entocort you are on?
i'd fallow the doctors' advice. The risk of getting cushion syndrome is less than getting back into flare imo. and a flare, we never how bad it can return... I dont think its a good idea to stop a treatment without telling you doc. been there, done that, regret it. I imagine your doc doesnt want to put you on a maintenance drug just before your trip because they need close monitoring especially at the beginning?

I have been on 9mg a day for the last 3 months.

They are content to keep me on entocort another 3-4 months as it's around then I am scheduled to start remicade.

I think coming off entocort is a good idea, if I can maintain remission without it and the risks of side effects then it's a win-win. Also, i'll have entocort with me which I can start at any time if symptoms begin to flare.

 

[Lady Organic]

ive never taken entocort only prednisone, so i dont know if 9mg is a low dosage. if its low dosage, im not too worried, but if its medium or high, i'd consult dr for proper tapering. have a nice trip!

 

[Justanothercp]

I've taken 9mg of Entocort for years, no problem.

 

[Nomis1234]

I've taken 9mg of Entocort for years, no problem.

Really? How many years? And you experienced no side effects at all?

 

[UnXmas]

Which effects on your appearance are you worried about in particular? I know how distressing it can be, but sometimes there are ways of managing these side effects, e.g. facial hair growth and skin problems can be sorted with cosmetics, weight gain can be prevented with diet, and "moon face" and other forms of bloating can sometimes be helped with dietary measures too.

 

[Nomis1234]

Which effects on your appearance are you worried about in particular? I know how distressing it can be, but sometimes there are ways of managing these side effects, e.g. facial hair growth and skin problems can be sorted with cosmetics, weight gain can be prevented with diet, and "moon face" and other forms of bloating can sometimes be helped with dietary measures too.

I'm worried about moon face. I have been on Budesonide/Entocort for 3 months and I am supposed to stay on it for another 3 months; which seriously increases the chance of experiencing side effects such as cushing syndrome and therefore moon face.

 

[CrohnsMedicalStudent]

I'm worried about moon face. I have been on Budesonide/Entocort for 3 months and I am supposed to stay on it for another 3 months; which seriously increases the chance of experiencing side effects such as cushing syndrome and therefore moon face.

Do not worry. Budesonide, even at 9 mg a day, actually has been studied against prednisone, and it was found it elicited much fewer side effects than 20 mg of prednisone per day.

I was on 40 mg of prednisone for several months, then up to 60 mg, and even up to 80 mg. I experienced a bit of moon face, however this was expected as I was on pretty high doses of pred.

At 9 mg per day, you shouldn't have to worry about those types of side effects. It's not completely impossible, but budesonide is far better tolerated side-effects wise than prednisone.

Like UnXmas said previously, a lot of these potential side effects can be mitigated through watching your diet.

I know during my 60-80 mg days, I'd be up all night and literally raid the fridge from top to bottom. The side effects were awful.

Your concerns are totally understandable, but I honestly think you shouldn't experience such things. Take care and I hope you feel better soon!

 

[UnXmas]

Reducing your salt intake may help with the moon face and any other bloating you may experience. This site has some information about prednisone and diet, some of it's quite basic, but there are some good suggestions: http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/SpecialDiets/Pages/prednisone-diet.aspx