New here, need advice ASAP, help!

[nancerini]

Hi I'm Nancy, I'm new here and worried sick right now. I've had Crohn's for 27 yrs and currently my every other week dose of Humira isn't working. I ended up with 2 bowel obstructions and I'm on prednisone. I have to go to the doc today to discuss the next step if things don't settle down soon. She has talked about either adding azathioprene to the Humira or going on Humira every week. I'm really scared, I'm afraid I will get cancer or leukemia, I don't know what the safest option is and that is all I'm concerned with, I want to pick the safest option. Does anyone know which is safer? I would appreciate any comments/suggestions at this point as I am sick to my stomach from worry. :frown:

 

[Snoflayk505]

Hi Nancy. Welcome to the forum
Wow I know exactly what you are going through with your fears. I felt like I was just reading my own thoughts when was on Humira and it was failing. I actually had my daughter on a Humira case study which was successful but it failed right after.

I can feel the panic in your post I am wondering if you have ever tried diet? I was so so sick and lived over the last decade in hospitals on and off through my entire 20's on steroids and TPN. Life was so hard and nothing worked for me but Humira for a bit and steroids. I was so desperate and finally gave in to a permanent illeostomy. Since my illeostomy surgery i was symptom free until a little over 2 months ago and was headed straight for the hospital. I tried the SCD diet as a last resort and it completely wiped my flare away!. It is utterly amazing. Docs told me how important diet is but I never heard more about it other than "trial and error" and "everyone is different". Well the digestive disease diets outline what are likely harmful foods and what are not. These are very strict diets but they have proof behind them about bacteria. I have been completely symptom free unless I ingest something that is not allowed. it has proved to me 3 times so far exactly 12 hours after eating something that is known to cause symptoms. It's amazing and I have devoted myself to it. I welcomed back a quality of life back I said goodbye to a long time ago.

Diets don't work for everyone but they do work for SO MANY. It's ground zero, it makes sense. I hope you find relief soon and maybe try diet if you haven't already. Good luck to you and you will be in my thoughts

 

[Patricia56]

Hi Nancy,

Sorry to hear about your situation. It's very scary to face the unknown of taking meds like these. But sometimes you don't really have a choice you know?

I know of several kids who are on double or triple Humira taking a dose every week or even two doses a week in one case.

The research data says that you are most likely to get a better result if you take 6-MP or Methotrexate along with a biologic. I figure if you're going to do the meds then you should try to get the best result possible so take the combo. But there's something to be said for trying to minimize your risk by doing only one drug.

There is a very small, very very small, risk of cancer from the 6-MP but the risk of cancer isn't nearly as great as the risk that you will end up with emergency surgery, an abscess or a full obstruction that requires surgery if you don't get back into remission.

25+ years ago we didn't have 6-MP/Imuran. The only options were surgery, prednisone and diet. The rates of surgery were very high. The rate of disability - well many people didn't work who had CD. The life expectancy was as much as 20 years shorter. Part of that was the side effects/damage done by so much prednisone.

I don't think we want to go back to that - and refusing meds that may help you is a little like doing that. Not being critical, just suggesting the risks from uncontrolled disease are much scarier.

 

[PattyLynn]

Hi Nancy,
Welcome to the forum! I am on Remicade so I can't comment on the Humira but I am also taking Azathioprine and have been for about 10+ years. I am supposed to get my blood tested once per month (but sometimes I forget - oops!) and so far, I haven't had a single problem related to this drug. I know I will be on it for the rest of my life and that there is always the possibility it will one day cause problems, but I am willing to take that chance because right now, the benefit of Azathioprine far outweighs the possible risk.
Good luck with your decision.
Trish

 

[ThatsWhatSheSaid]

Everything that Patricia56 said in the post above mirrors what the doctor said to me at Mayo Clinic yesterday.

I'm going through a similar thing. Right now just on Pentasa, Entocort failed, and the only thing that makes me function is prednisone. The doctor at Mayo said that all studies indicated that the best shot at inducing and maintaining remission involves combo treatment of a 6mp and an anti-TNF (Humira, Remicade, etc). I'm really scared too. But I feel that I have to try it. My quality of life is so poor right now, and that characterization is generous. But he gave me some statistics. For example, the cancer risks....If you fill Yankee stadium every day for a year, 10 people that have entered the stadium will end up with the cancer. Now, if you put all of the people entering the stadium on these drugs, the number increases from 10 to 30. There is an increase, but if you think of the numbers, the thousands and thousands of people to fill the stadium every day, and if no one is on the drugs, 10 people will end up with the cancer anyway, and if everyone is on the drugs, then 30 people will end up with the cancer...I guess it boils down to whether or not your quality of life is good enough right now to make a go of it.

I've held off for a long time hoping for a change. Just finished a course of pred July 7, pooping blood today, joint pain, eye issues, inflammation everywhere, mouth sores etc. So fatigued my movements give me a visual image that I am trying to move through water. I can't do it anymore. And I am scared, and right now more thinking aloud than anything else, but would I take 10 years off the end of my life to live better now? Yes. Absolutely. I'm 25. Those last 10 years would probably be miserable anyway....diapers, height of CD, deteriorating health. Right now, I am eloping in October to Tahiti with the love of my life (we have been together for 11.5 years) and we want to have kids. I want to have the energy to get a better job so I don't have to work two jobs just to pay my medical bills, you know? And that just drains me and further exasperates my health issues.

I guess that is just me though. I'm scared to death (I have panic disorder, so increasing my odds of these bad things is no good for me mentally) but looking at the long run, I think it is the best thing I can do for myself.

 

[ThatsWhatSheSaid]

I meant to say, you have to look at those factors for you. Weigh it out. You love you. What is best and most important to you now and in the long run. The answer is in your heart. If you do everything you can to take care of your body to the best of your ability, then you are doing the best you can do. And really, that's all that any of us can do, right?

 

[nancerini]

Hey all, thanks for the replies, I appreciate all your thoughts on this matter. The doc did tell me that taking the azathioprene with the Humira would be the safest choice as it is a half of the dose you would normally be taking if you were just on azathioprene. I guess at this point, I need to just stop worrying because it isn't helping, and pray. IF it happens, it happens, there is nothing I can do to stop it. By the way, how do you all get your picture to post in the forum by your name??