Doctor wants Humira please help!

[Hendrick4731]

Hello everyone, I am very new to the forum and talking about my UC. I was diagnosed in 2013 and had a flare that my doctor put me on asacol and prednisone. I was on a taper but within 5 days I was symptom free. I am now on flare number 2 after almost a year with no symptoms and almost done with my prednisone taper and no change noted? I consider myself lucky from what I read from other people but the only symptom I have ever had is blood in the stool. No pain or fever or any symptom. I am wondering if anyone else is experiencing just the one symptom or if there is something else I should talk to my doctor about? He wants to put me on Humira and I have started the blood test to do so, my only concern is the side effects. In reading about Humira people say its a godsend for the Pain and loose stools. But i dont have any of that so I am at a cross roads on what to ask the doc to try.

Thanks in advance for the replys

 

[David]

Greetings and welcome.

I'm sorry to hear you're flaring again.

I would suggest checking out our Humira forum located here so you can get more personal experiences which may allow you to make a more educated decision.

We're here for you!

 

[Honey]

Hi there, and welcome,
I have been on many different treatments until the right one for me was found viz Remicade infusions. There have been times when I said I was doing fine and was told that I actually wasn't. Have you had a Calprotectin test? They go on the level of inflammation showing up in your tests, including bloods. We are all individuals in our illness and response to treatment, so I hope all works out for you soon. Let me know how you are doing.
:welcome:

 

[my little penguin]

DS has bern on humira for two years no issues

 

[Hendrick4731]

@Honey I have not had a Calprotectin Test before. I just finished all necessary blood work to get me onto Humira and also had an MRI of my Small Bowel to see if there is any inflamm. there. Its just frusterating because I have little symptoms and my doctors wont say exactly what it is even though I have done everything they tell me. They say "consistant with" instead of "you have" I am thinking I will get on the Humira to supress my flare I am on. Then I will talk to my doc about diet and such and maybe coming off eventually.

 

[Honey]

Hi there
That is wise. It may be short term to reduce inflammation and then you will be o.k if it is not Crohns. Keep asking questions that helps. I hope you feel better soon. Let me know how things are. If you have a question please ask. Best wishes

 

[POTTYTIME!]

Hello everyone, I am very new to the forum and talking about my UC. I was diagnosed in 2013 and had a flare that my doctor put me on asacol and prednisone. I was on a taper but within 5 days I was symptom free. I am now on flare number 2 after almost a year with no symptoms and almost done with my prednisone taper and no change noted? I consider myself lucky from what I read from other people but the only symptom I have ever had is blood in the stool. No pain or fever or any symptom. I am wondering if anyone else is experiencing just the one symptom or if there is something else I should talk to my doctor about? He wants to put me on Humira and I have started the blood test to do so, my only concern is the side effects. In reading about Humira people say its a godsend for the Pain and loose stools. But i dont have any of that so I am at a cross roads on what to ask the doc to try.

Thanks in advance for the replys

I have severe Crohn's Disease and have been on Humira for a few months now. Kinda weird to suggest humira for one symptom, but that is why the doctors get paid to make those decisions. It is not a godsend for me so far. The only side effects I have is it knocks me out within 10 minutes after the injection. Also the next day I have a migraine. Other than that non side effects. Only problem is, I still have 5 to 10 BMs a day unless I take meds to stop me up. Still have blood and mucus. Still cramp very bad. My humira nurse is concerned and may suggest I be taken off the humira if there is not any drastic changes by the end of the month.

good luck with the humira.

 

[Hendrick4731]

Hi there
That is wise. It may be short term to reduce inflammation and then you will be o.k if it is not Crohns. Keep asking questions that helps. I hope you feel better soon. Let me know how things are. If you have a question please ask. Best wishes

Well I went in for an MRI of my small bowel on tuesday, he said that if there is inflammation in there then he can confirm Crohn's. Well got the phone call yesterday and they didnt find anything and now he is hesitant on a diagnosis. I have done multiple blood work ups 3 colonoscopys and an MRI and am basically getting that they are unsure whats wrong with me and just want me to get on Humira to see if that helps but i dont think its worth it to "just see if it works". I JUST WANNA KNOW WHATS GOING ON!

 

[AshleyC]

My Doctor wants to start me on Humira too... I also don't want to start cause I hear you are never suppose to stop it and it seems so extreme being injections.

However I have had a bad flair up for over a year now and have all crohns symptoms. I was prednisone dependent during that time on and off. I was only fine on high enough dosses. Now there's no more taking prednisone and I can't eat, trying to self heal.

 

[Honey]

Hi there,
I was on humira , giving myself injections for three months, as Meds did not work for me. I have Crohns so if it is not that, then it seems to me there must me meds you can take rather than injections. My hair stopped growing and became thin. It did not work for me and I ended up taking steroids, then Remicade infusions. The latter is usually only as a last resort, when all meds failed as did with me. So, I am pleased for you that it is not Crohns. We are all individuals in our response to meds and the diagnosis unfortunately, does take time to get right. So do not loose heart. Steroids can reduce the inflammation too. You can taper down the doze every 2 months or so, gradually, as advised by your Doctor. It may be what is needed even though you are not keen. Get well.:
:hang:

 

[Jennifer]

Hendrick4731 do you have copies of your test results from you scopes, blood work, MRI etc? If not try to get those. Have you had any other tests done like an upper endoscopy, CT scan, MRE, Pill Cam or a double balloon enteroscopy (this is a scope of your small bowel, a specialized test that only trained doctors can perform)?

While it's important to stop the bleeding it's also important to know where the blood loss is coming from and what's causing it. I'm not suggesting that you avoid starting Humira but I encourage you to continue testing. If your GI isn't interested in testing further then you may want to consider getting a second opinion.

 

[Hendrick4731]

Jennifer,

Thanks for the Reply, I released all records and I am currently seeking a second opinion. I meet the the doc tomorrow to see what else can be done. I have not had any other tests, I have had 3 scopes, and an MRI small bowel. There was nothing showing in my small bowel that I had any disease in there. So the Doc went from being positive it was crohns to now not being certain. So frusterating Over the last few days I have actually noticed a small improvement with the bleeding. it has been far less but I havent changed anything so Im not sure. I will mention these test tomorrow! Thanks!

Hendrick4731

 

[Jennifer]

Good luck to you! Let us know how it goes.

 

[Pilgrim]

Our daughter who is 4 has been on Humira for 5 months. It was a tough decision, however she is like a new person with a renewed ability to live life. It has been working very well for her.

 

[CrohnsMedicalStudent]

Our daughter who is 4 has been on Humira for 5 months. It was a tough decision, however she is like a new person with a renewed ability to live life. It has been working very well for her.

That is excellent! I am considering trying Humira myself. I've heard nothing but good things, however the listed side effects are always scary...but you gotta do what you gotta do!

I'm hoping it'll be the answer to all my prayers...I've been struggling with joint and muscle pain for too long.

 

[Lady Organic]

Hi is it possible your doctor is hesitating in bewteen crohn's and ulcerative colitis? Diagnosis is not always clear in between the 2 when disease is located in the rectum and colon. A fair proportion of patients remain ''Indeterminate''. Sometimes diagnosis clarifies rapidly, but in other case, the ''mystery'' remains for long terms. After 14 years of disease, Im still labelled ''Indeterminate'' and I have seen all the names in my reports crohn's, ulcerative colitis, indeterminate, UC-like Crohn's, etc!!!. It doesnt change much thing, treatments are basically all the same for the 3 conditions. If that is your case, a medication such as HUmira is used for all three disease conditions.