Need some advice to help my girlfriend

[craig_nz]

My girlfriend was diagnosed with Chron's Disease in early January after struggling with stomach cramps for about 6-9 months of last year.

She's currently taking Entocort but its causing her tongue to swell up. I can see the side of her tongue is imprinted with the shape of the inside of her teeth. This swelling is causing her tongue to rub on her teeth and giving her very painful ulcers on her tongue.

Having painful ulcers on her tongue combined with still getting intestinal cramps, means her appetite is almost non existent and she's getting very skinny.

Have any of you out there experienced this side effect from taking Entocort? Do you have any tips or advice about what i should do to help her? She's getting quite depressed with the fact that she's still struggling with pain on a daily basis and im running out of ideas.

Thanks a million.

 

[Manzyb]

I'm really sorry, I've taken entocort before but haven't had that side effect.

Has she contacted her doctor about this side effect? That doesn't quite seem right. Maybe entocort isn't right for her and she should try prednisone?


I really hope that she gets to feeling better. It is great that you are being so supportive and trying to find out ideas for her.

I honestly think that she should talk to her doctor about this though!

 

[craig_nz]

She tried Prednisone, but it gave her hives so they swapped her to Entocort instead.

Swelling of the tongue is listed as a side effect of Entocort on a few of the websites ive looked at.

Should she still be getting intestinal cramps since she's taking the Entocort or is the dose potentially wrong?

Are there any alternative's to these two drugs? She comes from a very naturopathic / herbalistic background and i dont think these harsh steroids are doing her much good. Ive tried getting her back to the doctor but she doesnt have much faith that they'll be able to offer her any other solutions.

Ive been reading about Chang Shang stopping the Th17 cells:
http://www.physorg.com/news/2012-02-scientists-molecular-secrets-year-old-chinese.html

However with no guides as to dosage or how to take it, its been a bit of a wild goose chase.

Also have read about yoga, acupuncture and other alternative treatments working.

Has anyone actually had any success with these or are they just wishful thinking?

 

[Manzyb]

Is she on anything else other than the Entocort? Do you know what her dose is? Maybe the doctor could lower the dose a little bit to help alleviate the side effect?

I don't have any experience with any of the other thing's you've mentioned. There are a lot of other drugs out there to treat Crohn's, though. Usually steroids are given to help calm inflammation down during a flare, but a lot of people are also on other medications as well.

She may be surprised by options or solutions that the doctor can give her. She really should go back and just discuss it with them. This is a very frustrating illness, and it takes time to find the right treatment plan.

 

[craig_nz]

Not entirely sure what else she's on, i think she is taking some other pills as well. Ill keep trying convince her to go back to the doctor!

 

[Slim Johnson]

I used Entocort for a few months, without any measurable benefit. Ultimately, I gave it up..

No tongue swelling though.

I too am on the boat that she needs to get back into the Dr. office.