Help for someone not comfortable taking Biologics

Hi everyone. This is my first post so hopefully I am not messing anything up. I am here looking for advice about how to talk to my doctor about treating my Crohn's without the use of Biologics or Immunosuppressants.

A brief background, I am a 28 year old female with Crohn's and I was diagnosed about 3 years ago. I tried Pentasa which was a disaster (gave me really bad diarrhea and blood) and then was on Entocort which kind of worked. My doctors than but me on 6MP for about 2 years and I was pretty much between 75 and 100mg of that. Well, I certainly was not made aware of the possible side effects of 6MP or I likely would not have taken it for those years. Regardless, it appears that 6MP did not work for me so I have stopped taking it. I am very paranoid that I have put myself at risk of cancer, especially HSTCL, by taking 6MP so long and am pretty upset that I never was made aware of the possible side effects (this is probably my fault for not doing my research). After the 6MP my doctor put me on Entocort and Lialda, but the Lialda gave me the same issues Pentasa had.

Now my doctors have me on Prednisone after a recent flare, and I am currently on 40mg, tapering across the next 7 weeks. I feel pretty good except that I do have some insomnia and I am eating everything in sight...My doctors want to put me on Remicade which I am just absolutely not comfortable with. I really am not on here to debate the merits of biologics and I totally understand why some people take them, I just know that I personally cannot handle them. I am already super anxious that I have given myself cancer by taking 6MP but now if I started Remicade I would be a basket case (HSTCL really scares me). The problem is that I am having a hard time getting my doctors to listen to me that I am not going to take a biologic. Does anyone have any suggestions about other ways I can control this disease without taking these meds? Or atleast ways to talk to my doctor, because I really don't want to feel pushed into taking a medicine that could possibly give me cancer. Again, I am certainly not judging anyone who takes these meds....I totally understand why people do....it just isn't for me. I am meeting a Clinical Nutritionist at Columbia in January to hear his perspective. I am open to things like LDN or even EN but I can't find a doc who will prescribe LDN.

Thanks in advance for any feedback.

Welcome to the forum, sickofcrohn's.

I'm sorry that you are so frightened by the meds used to treat this disease. I want to discuss your options rationally, though.

- you cannot tolerate mesalamines, the safest med to used for Crohn's.
- you do well on steroids.
- you are afraid of immunosuppressants like 6MP and biologics.

My comment on this is that steroids are by far the very most dangerous drug you can choose to use, with regard to risk to your long-term health. Long term use of steroids will make your bones weak, the soft-tissue in your joints fail, your adrenal glands quit working, your gums swell, etc. etc. You do not want to use entocort or prednisone to manage your disease.

So if you are afraid of the biologics and 6MP, and can't use mesalamines, and shouldn't use steroids, what are you left with?

You can have resection surgery and remove the inflamed bowel. You will most likely have disease come back, but you may get a few years of remission.

You can try restrictive diets like SCD and see if they get you into remission. There are other alternative meds like low-dose naltrexone that might help, too.

You can try experimental methods like helminth therapy.

Your choice!

I agree with the above. Unfortunately, there are not A LOT of options out there. Maybe try the SCD, it is tough though - you have to be very dedicated. In the end though, you will do what's best for you.

I agree totally with Kazbern. I seem to say that alot.

When considering the major step to biologics, the natural reaction is to have considerable fear and apprehension. I think everyone that has had to consider taking this step has gone through this.

I know first hand that when I had to make this decision for my Daughter, I was terrified to put it plainly. I'm certainly not trying to downplay the seriousness of this decison, but when you consider all of the probabilities, it will no longer seem like such a difficult decision.

Prednisone will certainly cause serious damage to the body, particularly with long term and even intermittent use. Leaving the disease unchecked or under-medicated will also cause serious and permanent consequences.

Anti-TNF's are the current state of the art drugs that we have to battle this disease. Good luck with your decision. Please keep us updated.

You might try finding a functional medicine doctor or a naturopath, either of those will prescribe LDN and have other options with you. You might also look into acupuncture.

I have had Crohn's since 2007, and have been on everything. Pentassa, Enticort, Prednisone, and 6MP. Pentassa and Enticort both didn't seem to help, and the side effects were terrible. I had a bad reaction to 6MP. Prednisone worked, but again, the side effects were the worst I've ever dealt with, plus it's bad for you to be on long term. When my GI finally put me on Humera, my life changed. The benefits outweigh the possible risks. It gave me a life back. The only side effect I've had is a mild case of psoriasis, which is easily contained with a cream my dr gave me. I have done a lot of looking into Humera and the cancer concerns are not something to really worry about until you have been on Humera long term (10+ years). That is my experience anyways. If nothing else is working, I suggest giving it a try. It's worth it to feel good again.