Questions about treatment

[michelle222]

Hi everyone. So the last month has been really tough. I went off 6mp because it was not working and I did not like the risks associated with it. They put me on Lialda which was a disaster, made my diaherrea 10 times worse with lots of blood. Ended up in the ER and am now on 40 mg of prednisone. Ugh. I do feel better on it although I still have a little pain and some blood (much less though). My doctor wants to meet with me next week bc I obviously can't be on pred forever. I know he's going to push biologics but I refuse to take them for now (no offense to anyone on them, I think everyone needs to make their own choices and fully support those who use biologics). I meet with s clinical nutritionist who thinks I can control this disease with diet and neutriceuticals, but don't meet with him until jan 11 (earliest he could get me in). I know a lot of people don't believe in treating this with diet alone but I trust this nutritionist and would like to try (while still being checked regularly by my GI).

My questions: should I talk to my Dr. about just staying on a tapered prednisone dose until I can meet with the nutritionist? Bc I know my doctor won't want me to go med free for a month, but i do not wish to do biologics or anymore immunosuppressants for now. I hate the idea of staying on pred but if its time limited i could handle it.Does prednisone actually heal crohns flares or does it just mask symptoms? Are there any other treatments people suggest?

 

[Essieluv]

You may want to suggest Entocort. It is a steroid, much like Prednisone. However, it is dsafer for long-term use, and usually the side-effects aren't as extreme. That may be a good route to take until you can see what the nutritionist says.

I know biologics are scary and I totally understand you not wanting to take them. However, if they help you regain your quality of life, aren't they worth it? Even though I've had not-so-nice experiences with all three of the major biologics, I would try another one in a heartbeat if I thought it gave me a chance to achieve remission. And sometimes, the disease simply cannot be managed without hefty meds like Remicade or Humira. It's just something to think about.

I wish you well with both your appointments, and I hope that you are able to get your disease under control quickly! Keep us updated?

 

[SarahBear]

Put simply, just tell your doctor what you just told us and ask what he suggests you do given that you won't take biologics. Explain to him that you want to try diet first and you would like for him to respect your wishes.