Would appreciate some advice

[wps]

Hi all! I was hoping some people might have some advice on meds. I do a lot of research and reading, and talked to my previous doctor about all kinds of meds. But he was not easy to get real answers out of as far as side effects. I had a terrible reaction to imuran and ended up in the hospital and his reaction was "you did not die, you are okay!" To be fair... English is not his first language and he's a third generation doctor with a very dry sense of humor. He always talked to me about remicade and humira, but I'm pretty scared of those meds. One of my best friends died from cancer when we were 21, and it was triggered by having his wisdom teeth cut out. Watching him go through that was life changing. So getting a fatal form of cancer because of trying to do something medical to your body is a very real and scary thing for me to think about. I was previously on pentasa, but started having side effects. I'm without a doctor until the end of next month when I can finally see my new GI, so I have time to figure out what I'm comfortable with. I was hoping some of you could give me a little advice on what has worked for you. If humira or remicade has been your life saving medicine, do you feel like it's worth the risks?

I know everyone has different symptoms, so here are mine: diagnosed with crohns following the birth of my daughter. I've been showing symptoms for over two years and have never been in remission. I have diarrhea almost every day, severe cramping, pain, have developed arthritis, really terrible knee pain, fevers, and feel tired/cranky a lot. I'm not skinny, I'm just a little fluffy... so I don't have trouble keeping weight on.

Thanks for reading!

 

[Justanothercp]

I've been on Remicade for years. No problems and it does help.
Paleo diet also very helpful to me.

 

[lgpcarter]

I've done almost every drug out there, and, yes, without question, I feel they are worth it. You have to balance the damage that will be done by active disease and long-term inflammation vs the possible side effects of the medications used to control the disease.

 

[Honey]

Hi there and welcome, I was on Remicade infusions after all other meds failed or caused me bad side effects. I was well on Remicade even though I was not keen to be on it. I have been off it now for over a year as I have been well. However, my tests results are not good, so I have to consider going back to it. We are all individuals in our response to treatment so you have to be guided by your own doctor and what is best for you! Best wishes, let me know how you are doing. :
rosette1::welcome:

 

[AJC - Australia]

everyone is different.
for me, i was so sick that life wasnt worth living, so the risk of getting something worse was not really an issue when i started Remicade…and thankfully, it made me well and I still take it, ten years later.
If i wasnt that sick, i proabably would have tried other things.
IN AUstralia you can only get remicade in the first place, if you are very ill and have tried most of the other things - well, it was like that when i started taking it anyway.

I think it really comes down to how you are feeling,… and dont give up hope that you can get well.

I had an alergic reaction to Imuran and 6MP - both gave me pancreatitus, but i could tolerate methotrexate fine.

everyone is different.

and we never know when our time is up! You might spend all your time worrying about reactions, allergies etc and then get run over by a bus!

smile

 

[afidz]

Keep in mind that untreated IBD can lead to colon cancer. Not trying to scare you, just being honest.
As far as biologics and cancer, the percentage of people that get cancer from it is very small, I think somewhere around 8%. They also determined that it is a specific combination of meds and it is usually in adolescent boys. I'm on my phone, I need to find the study, but talk to your new GI about your concerns. I started remicade in October and I have my life back. I'm looking for a job for the first time in 3.5 years. It's worth it to me