I want to stop humira for good

[InstantCoffee]

I've been diagnosed since I was 14 or 15, I'm 23 now.
When I was first diagnosed I was put on Remicade, it worked for a while but just coming out of highschool I started to develop other symptoms, food intolerance, aggressive abscesses, diarrhea etc.
Out of college I was switched to an adult doctor and as a parting gift my children's doctor put me on Humira to see if it would help/be better than Remicade.

I saw NO improvement of sypmtoms. It used to be on Remicade I could tell when it was wearing off, obviously decline of health and stomach etc. On Humira I never had that, there was no sign it helped me at all, I got really sick all the time.

Finally I figured out all my dietary intolerance, I cut out gluten, grains, oils, potatoes, maltodextrin, high fructose corn syrup, sucrose (basically all artificial sweeteners and sugar substitutes) black pepper etc. etc. I haven't felt this good in over 5 years.

Back in November I went off Humira because of a couple infections I had, and took anti-biotics. When I went off I noticed some other issues I didn't know about went away. One was what I now know to be a nasal infection, the inside of my nose was all crusty, I blamed the dusty/dry house but now I'm sure it was an infection, because it would crust up with abnormally colored stuff like you get from a draining infection and if I picked it off the skin seemed to 'ooze.'

The other was constant, recurring pink eye which makes me very worried for my long term health.

Other infections have declined to basically not exist.

All this combined with the constant risk of Lymphoma for, as far as I can tell, NO BENEFIT and I see no reason to take this stuff anymore.

At what point is it my decision as the patient? Are there any risks with insurance, SSI (I've been on disability from how bad my symptoms were before dietary fixes, I'm hoping to get to work now with my health in order but still will rely on it for a while until I can be sure I'm stabilized). I know on the form there was questions about taking the medications as prescribed.

The other thing is my doctor keeps pushing stuff like "Oh sometimes patients don't see the benefits of the drug!" but he's the one that has money to lose from this, and it's my health, my risk to take isn't it?

 

[Astra]

Hiya InstantCoffee

I've just posted the exact same thing!
I feel horrible on this Humira, nasal sores and sore eyes, etc, worse than I did before I took the bloody thing!
I don't know what to do neither!
xxx

 

[xmdmom]

In response to your asking "At what point is it the patient's decision", my answer is always. A patient can always choose to stop a medicine.

You wrote "but he's the one that has money to lose from this"--- can you explain this? How does your doctor get $ if you take Humira.

 

[Kev]

My advice is that, before going off it, figure out what you plan to replace it with, and if you can get it. Coming off AZA when it put me in the ER, I didn't have a backup plan in place. It worked out, because my doctor agreed to try me on LDN. Otherwise, I don't know what I would have done. So, examine your options, decide which one you want to pursue, AND... determine whether or not your doctor is on board.. and if not, who is, OK?

 

[Miss Underestimated]

It absolutely up to you. Sounds like maybe your doctor isn't listening to you. Just say you aren't going to take that drug any more, is there something else you can try. If he can't understand that, I'd find another doctor. You might be right, or you might be wrong, but it's your body and you are the one who has to live with the results.

 

[kiny]

Can't help you decide. But like people have said, the decision is always yours, always, no doctor can tell you what to do at any point.

Like Kev said, what I do think you should do is find a doctor that wants to support you in this decision and can keep an eye on you and treat you with other medication if needed. You need a back-up plan.

 

[InstantCoffee]

My advice is that, before going off it, figure out what you plan to replace it with, and if you can get it. Coming off AZA when it put me in the ER, I didn't have a backup plan in place. It worked out, because my doctor agreed to try me on LDN. Otherwise, I don't know what I would have done. So, examine your options, decide which one you want to pursue, AND... determine whether or not your doctor is on board.. and if not, who is, OK?

Thing is I've been med free since November I just want a doctor for occasional screenings to make sure nothing's happening under the surface but I've been symptom free the whole time.

My doctor seems self convinced the drugs are responsible for my weight gain and recovery when they did nothing and I was in a terrible state until my dietary changes, now they're doing more harm than good.