Is there anyone taking humira for sarcoid????

Hello Everyone!!

I hope that everyone out there is having at least an ok day! I was just curious if anyone out there is taking humira. My doc here on Long Island have no idea of how to treat me. I have seen a pulmonary doc, a nephrologist and a rheumatoid doc. Pulmonary was a complete waste of time! My nephrologist was wonderful to talk to, and he always returns my calls, but he does not know how to help me. So he sent me to a rheumatiod doc. Well, this doc was supposed to be like the best here on Long Island. He wanted to take my case cause he was so interested in me. Turns out, he was leaving that practice and going into a private practice. Wonderful! Anyway, he couldnt be bothered with treating me. He wanted me to take humira. The docs think that my constant lower left back pain is actually pain in my bones. Well, I know it isnt! But nobody wants to listen to me. My last cat scan showed that I have sarc in my lungs, outside on my lungs, on my kidneys and sarc has completely taken over my spleen. Well I think that is what my pain is. So why should I take humira????? I dont have bone pain....i dont have rheumatiod arthritis.....I dont get it. And OHHH my goodness, the side effects from that medicine.......crazy!!! So, please write me back and let me know if there is anyone out there taking this, and if you dont mind can you tell me why you are taking it, and if it helps! Thank you so much everyone!

Report post

12 replies. Join the discussion

Here is a website that lists doctors located in New York that treat Sarcoidosis. You should certainly find a good pulmonary doctor to treat you.

Report post

Forgot to list the website:

http://www.sarcoidosisonlinesites.com/dr%20database.htm#ny

Report post

Humira seems to have worked for me.

My sarcoidosis has been stable since I started on Humira 2 years ago. I had wide spread bone involvement, lung and brain lesions. Some of my bone lesions have filled in,I have only one remaining lung lesion and the 12 brain lesions have not changed. I also know I will always have sarcoidosis.

Prior to humira I was on prednisone and plaquenil ... suffered from lots of side effects and the sarc kept increasing. When my rheumatologist offered humira , as she said I had a very serious case, I felt that I had nothing to lose

The only side effect I have from the humira is that I am more susceptible to infections. Other wise I do not know I am taking it.

You have to make the decision for yourself................and I know it is a very tough decision to make. For a disease that has been around so long it is hard to understand why there is no concrete treatment to follow.

Take care, lavatera 49.....I have no pets but 6 adorable grandkids!!

Report post

I have been taking Humira for two months without side effects. I have had pronounced reduction in the size of my lymph nodes.
I am taking this medication because the risks are far less than with Prednisone. NO weight gain, no Karposi.
I realize that I have Sarcoid for life, but Humira is making me feel like I am taking control of my life back.
Good luck to you.

Report post

I just started taking Humira on Oct. 10. I know the risk involved but I figure I needed to try something to get my life back in order some kind of way. I have tried many different medication for sarcoid. I have been on methotrexate, which seem to effect my liver. Also been on imuran, which made me feel worse that any other medication. Currently I am aslo on plaquenil and predisone with the Humira. I am hoping that Humira works so that I am able to get back into school and working again. I am just glad I came across these comment to know that more people have used or considering using Humira because it took awhile for doctor to agree to it. A previous rheumatologist wanted me to tak it because medicine option where limited. Sarcoid has most recently been effecting my liver. It has also been cause for me to have surgey in my eyes as well as having my spleen removed. Yet with the information that I seen people have been on Humira and things are manageable... I am hopeful that Humira will help me as well. I guess I have a little bit to know its full effect but here is hoping..

Report post

Been on it for 12 months now and if u can get ur insurance to cover all or some of the cost for humira..take it..it helped me tons!

Report post

In Holland they give humira for sarcoidosis if the Remicade doesnt work anymore. I'm on remicade now. Works well too.

David

Report post

I have had sarcoid for twenty two years. I'm also a insulin dependent diabetic. I like remicade but it became dangerous to take. It was starting very bad black out during the infusion. They slowed down the rate of the infusion but that did not help. I'm now trying Humira. So far so good. I have lung, bone, eye, and skin involvement. I'm a 8th grade Science teacher. My students are always looking for the latest "cure". I explain to them that it has not been found, but..... maybe they will be the up and coming doctor to find the CURE. I wish everyone the peace of mind and sunny days that you deserve. This is a journey. It is not however one we can not weather.

Report post

Sadly, my insurance will not pay for Humira. I so badly need to get off the Pred. But I guess I am stuck with it and methotrexate.

Report post

I just started the Humira 2 days ago. I guess it take a while to kick in. I am looking forward to the relief it may bring. The injections hurts a bit, but not a big deal. I also take pred and Mtx, and of course pain medication. I do not tolerate the pred well so hopefully the Humira will work well enough that I can get off the steroids. Not sure about insurance yet. I hate this disease but I will not allow it to run my life. God is my healer and I am claiming a healing for all of us sarkies!!

Report post

My doctor sent a letter but since it is not FDA approved for sarcoidosis, my insurance will not pay. I've gained much weight since being on pred and now my blood sugars levels are creeping up. I don't understand why in circumstances like this, individual consideration can't be given. Instead, they give a blanket statement that it is not FDA approved for sarcoid therfore they won't pay for it. I certainly can't pay for it myself. I feel stuck between a rock and a hard place. Oh well, enough of my ranting. Life goes on.

Report post

Hi, All I have been on Humira for 3 months and there is already improvement on my CT scan! I had been on Remicade and had great luck till my husband left and took his insurance with him! The magic phrase for HUmira coverage is " compassionate need and medical necessity."

Why RA meds? RA is also an auto immune disease. A rheumatologist is an auto immune specialist. Remicade and Humira were found to help crohn's pts and chrohn's is also a granulomas disease.Once you discontinue Remicade, you are at a higher risk for allergic reactions. Humira is of the same drug family but made differently so there is less risk. Remicade is 2.5 hour infusion at the doc's office. Humira is dispensed like pen, ready and easy to give yourself a shot. It's a tiny weeny needle! I numb the area with ice for 15 minutes before and after.

You did not sat whether or not you were on Prenisone, but when I was I developed micro fractures in my spine and pelvis where little sarc lesions decided to take up residence, The pain brought me to my knees! That cleared up between getting off the steroids and starting the Remicade.

If you look even aspirin has a million potential side effects. Way the choices with a doc you trust. Only you can ultimately make that decision. For me, Remicade saved my life. I was failing when I found my rheumy. And now Humira is helping and my rheumy just tweeked that with "MTX" because of my bone pain in all joints.

Good luck to you and keep us posted on your decision and progress.

God bless us every one!
Mary

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders