Treatment suggestions for someone not comfortable with Remicade?

[michelle222]

I was diagnosed with Crohn's 3 years ago. I have been on various medications including Pentasa (which give me terrible side effects), Entocort and 40 mg of Prednisone for a year which caused me to gain 25 lbs. I have since been taken off the Predisone and am finally back to my normal weight after 9 months of dieting and working out like crazy. I was put on 6-mp (went form 75-100mg) about 2 years ago which I thought was helping somewhat (I don't know that I've ever been in remission) I still had pain, but not much diarrhea or blood. I recently had 2 flares and it appears the 6 mp is also not working. I am currently having some diaherrea (twice with blood), bloating, slight abdominal pain and joint pain.....sorry to be so graphic. They want to put me on Remicade. I am definitely not comfortable taking Remicade or any other anti-TNFs after doing my research and seeing the increased risk for hepatosplenic t-cell lymphoma (HSTCL). I actually am not even comfortable being on 6-MP now that I know it also slightly increases your risk for HSTCL even when taken alone.

I don't know what to do. I don't want to take any of these medicines and I'm worried I've already put myself at risk by taking 6MP at all. Does anyone have any suggestions for medications that aren't Immunosuppressants or anti-TNF drugs? Or any idea of non-drug treatments?

 

[Lulabelle]

Have you looked into enteral nutritional therapy to see if that can get you into remission? It involves taking a special liquid diet only for 6-8weeks that is usually either elemental or polymeric. I did this often as a child and it got me well. I am currently on it again now aged 27. Things are settling down and I'm having a colonoscopy on Monday to see what the disease activity is like. A few weeks back I was in a lot of pain with arthralgia and erythema nodosum and bms in excess of 15x daily. Now I am around 5-7bms and minimal arthralgia pain. It is well worth a try if your consultant is happy for you to work with the dietician on this and it has no adverse side effects. Look up the research as it has had positive results.


Sent from my iPhone using Tapatalk

 

[Manzyb]

The enteral nutrition is a great choice if you don't want to take medications. I don't know what the success rate is, but have heard it is great.

As far as biologics go, I completely understand your apprehension about them. Have you spoken to your GI about your concerns? The risk is still very low among biologics. Also, if your disease is left untreated or flared for a long time, your risk of colon cancer goes up as well. I know they seem scary, but for me the choice was easy. It seemed as though I was damned if I do or don't, but at least with the biologics I've been able to maintain some semblance of a normal life.

This was in no way intended to try and push the biologics, I just wanted to give you my point if view.


Sent from my iPhone using Tapatalk