Really scared about Humira

[Dmarks70]

Hi. I've said before that my Crohn's seems mild compared to many here. However, my GI still wants me to go on Humira to 'give it a blast' and try to avoid it getting worse. After Googling it (I know I shouldn't) I see law suits from people who have lost their sight or have irreversible nerve damage from using it. I really don't know what I should do. I couldn't tolerate Azathioprine as that made me feel rotten. My main symptoms are fatigue and joint pain. I don't really have problems with bms apart from them being very hard and very big. Any help/advice would be really appreciated.

 

[my little penguin]

Ds is 13 and has been on humira since age 9
No issues
His disease is considered "mild to moderate "
But has extras like joints and skin (juvenile spondyloarthritis from Crohns )
Look up any drug and there are always lawsuits


75% of those with Crohns have surgery within5 years of dx
Biologics seem to lower that risk to 40% (I think I saw somewhere )

A healed gut is mich better than a scarred narrowed intestines

Good luck

Tagging maya142

 

[ronroush7]

I have been on it for over six months with no known side effects.

 

[Retta]

I know how you feel, because I was the same way when I started Humira. I have been on it for 3 years now. When I first started I panicked and wouldn't leave the house and my Dr told me I can't stop living because I'm on this. The only side effect I have noticed was hair loss (pubic) but I can live with that.

 

[Dmarks70]

Thanks for the replies. It looks really scary when I am reading about sight loss / nerve damage and as I don't feel that sick it worries me about taking such a 'hard-core' drug. Sorry if I sound a bit of a wuss!

 

[ronroush7]

Best of luck.

 

[Scipio]

There are risks associated with any medicine, and Humira is no different. But in general the biggest risk that Crohn's patients face is not from any of the treatments but from untreated Crohn's.

The odds of losing your eyesight or some other catastrophe from Humira are very low. The odds ending up with fistulas, abscesses, bowel blockages, and major surgery from untreated, uncontrolled Crohn's are pretty high.

Your doc is advocating the "top down" therapeutic approach - to blast the disease with the big guns first to prevent the damage from accumulating. This is the current modern way to treat Crohn's. The old "bottom up" approach of starting with the mildest drug and working up to the strong stuff only after the weaker ones fail is now recommended only for the very mildest of cases.

How mild is your disease? Pain? Bloody stools? CRP levels? And what has the doc seen on colonoscopy?

 

[J_Matrix]

Please don't be scared, I have been on Humira for about 3 years now and haven't seen any side effects. Before that I was on Infliximab, but I started to develop antibodies to it and had to change.
These drugs really are the top draw when it comes to treating Crohn's and getting you to remission. They are expensive and wouldn't be prescribed without due care and attention given. Yes there are risks, but there are risks with any medicine but as Scipio mentioned the risks of untreated Crohn's is a lot higher.

I know only too well what happens when Crohn's turns nasty. I had a perforation, which in turn burst my appendix and I ended up with peritonitis. I had temperatures so high that I actually felt freezing and couldn't stop shivering. I was in hospital for 6 months. I left weighing 6 stone (that's 84 pounds for our American cousins!).

I don't want to frighten anyone, but these things can happen, rarely but they do, Your Crohn's is never going to go away, it is something that you will have for the rest of your life.

I wish I was given the chance of going on biological when I was first diagnosed, it would of probably saved me and my family a lot of heartache and pain

 

[Maya142]

As a parent, I understand the fear - we were terrified to put our daughters on biologics. But in the end, we decided the disease was scarier than the meds and have never regretted our decision to start biologics. They have really changed my girls' quality of life and honestly, I am just so glad they exist!

My daughters have been on biologics for years (7-8 years) and have had NO side effects at all. They had many more side effects with immunomodulators like Azathioprine and Methotrexate. Research is now showing how safe biologics are -- safer than drugs like Azathioprine.

Good luck!

 

[Dmarks70]

How mild is your disease? Pain? Bloody stools? CRP levels? And what has the doc seen on colonoscopy?[/QUOTE]

I only really have some mild stomach pain, fatigue and joint pain. My calprotectin level was about 230 at last count. My colonoscopy was clear and I was diagnosed by Capsual endoscopy as it's in my small bowel. Never had crp done! Thanks for all the advice. It's really helpful.

 

[my little penguin]

One last thing to understand
Your doc has decided that based on your history and the doctors experiences
The benefits outweigh the risk for humira for you as an individual patient

The decision making acronym I ask the doc


B- Benefits if the drug is used

R- reason for the change

A-alternatives to the drug

N - what happens if nothing is changed

D- decision.


Good luck

 

[GI Jane]

I didn't have any side effects with Humira. It just didn't work and going through the painful shot every two weeks was like torture to me with no benefits. I know it has helped a lot of people. They have to list everything because of our lawsuit society, which is a shame. I research make a spreak sheet of questions for doctors and what if any symptoms. Because when I go to GI I think I'll remember than....nope.....but enough about my head injuries....whattt.....sorry time for bed.

 

[Dmarks70]

Sorry it's taken me so long to reply to this. At the moment I generally feel OK. A bit of fatigue especially after BMs and stiff joints. That's why I don't know if I warrant starting Humira. I've had all the blood tests and a chest x ray and waiting for the results and then the doc will do the prescription but I'm still unsure. My biggest fear, and I'm sure it's the same for many of us is not knowing what is going on inside and will it just get worse if I leave it. Thanks for your advice it's much appreciated.

 

[ronroush7]

Hope you get answers soon.

 

[GI Jane]

Sorry it's taken me so long to reply to this. At the moment I generally feel OK. A bit of fatigue especially after BMs and stiff joints. That's why I don't know if I warrant starting Humira. I've had all the blood tests and a chest x ray and waiting for the results and then the doc will do the prescription but I'm still unsure. My biggest fear, and I'm sure it's the same for many of us is not knowing what is going on inside and will it just get worse if I leave it. Thanks for your advice it's much appreciated.

You said that so well.....if we only had transparent bellies.

 

[Bufford]

You know your body better than the doctor does and your should mention all your concerns and question him on other treatments that are available. For the sake of brevity here, I took various treatments from Cipro/Aza to Remicade. They all made me sick, while some provided relief others made me very sick such as Remicade. I had to stop after the 3rd loading dose.
Everybody is different. Despite treatment failures, I have not had any emergency surgery since the big one 16 years ago. For the most part I have been able to tame the Crohn's using diet, and stress control. Getting a good nights rest is perhaps the foundation for remission. Not every patient needs the big medical guns, and bear in mind these meds to put a lot of stress on internal organs such as kidneys and the liver.

 

[Magnolia24]

I'm in a similar boat. My crohn's was kept in remission for a few years with diet and Apriso. I flared last month, and colonoscopy showed more extensive inflammation than I'd had at diagnosis. My doctor is really urging me to start biologics. However, after a round of prednisone (now off) and switching to Pentasa, along with eating very clean and simple..I'm feeling a lot better..Still dealing with fatigue and occasional abdominal pain..No other symptoms. So now I'm wondering if biologics are the right step for me right now? Especially when the body develops antibodies to them, so they do not work forever - Am I at a point in my illness that merits starting them, or should I wait? On the other hand, am I risking the illness worsening and causing other problems in the meantime by not starting? And of course the risks involved. Anyway, all that to say, I get where you are right now. Keep us updated on your decision. I'm interested to know how others navigate this tough call.

 

[ronroush7]

You might want a second opinion. Yes,there is a possibility that there could be damage going on inside your body that you are not aware of. Sending you support.

 

[Rosco]

Sorry it's taken me so long to reply to this. At the moment I generally feel OK. A bit of fatigue especially after BMs and stiff joints. That's why I don't know if I warrant starting Humira. I've had all the blood tests and a chest x ray and waiting for the results and then the doc will do the prescription but I'm still unsure. My biggest fear, and I'm sure it's the same for many of us is not knowing what is going on inside and will it just get worse if I leave it. Thanks for your advice it's much appreciated.

My son who has Crohns and has for 10 years was offered this same choice now we are about a month in and have not chosen to take the plunge yet we are looking at any an all alternatives before using Remicade or Humira for us the risk are high and the side affects to vast to take it unless there is no choice. But thats just our perspective.oo: