Humira as treatment for Sarcoidosis

Another sarcoid patient posted that they wanted to know about Humira as treatment. I strongly recommend Humira. You need to try it and determine if it is effective for you but it has saved my life. I also strongly recommend that any person with active sarcoid whose doctor is prescribing prednisone or prednisone derivatives, first get a bone density test as a baseline. I had been under treatment with the top pulmonary sarcoid expert in NY and when I started bleeding 4-8 ounces of blood daily from my lungs, he put me on prednisone 20-40 mg daily for over a year. I had extremely dense bones due to college athletics division 1 and years of weight training. I gained tons of weight on prednisone and stopping even for a week caused symptoms to restart. I finally went to a top rheumatologist at Hospital for special surgery (who has tons of Sarcoid experience) and was moved to Humira. I was able to get off prednisone after three weeks and have been much better. My symptoms resurfaced once because I went 8 weeks without humira due to insurance company disputes. One large side effect of the prednisone is that I discovered I have osteoporosis due to the prednisone. My Pulmonary doctor never mentioned the bone distruction side effects of Prednisone. Humira has caused me to get some sinus infections but I stretch the dosage out to 10 -12 days apart when I experience these and am very careful to avoid people with any kind of cold or flu.

I would almost say that with Humira, I am cured. I have some residual joint pain from the prednisone usage but Humira works on the Sarcoidosis. I have been told by a couple of doctors who are in research that Humira, although designed for Arthritis, is almost a perfect solution to Sarcoid if you designed a medicine to biochemically target Sarcoid, Humira would be it. It works on the TNF (Tumor Necrosis Factor) which is part of the basic mechanism of Sarcoid. Humira is an Anti Tumor Necrosis Factor medication.

Report post

5 replies. Join the discussion

Thanks for the info....I had inquired about humira....will talk to my lung doc on next appointment.

Report post

I'm glad Humira has worked for you, and that you are under great doctor care. Be aware there is a black box warning on Humira; I can't use it- it was recommended for the chronic psorasis on my feet, but my dermatologist did research and consulted with NJ- due to my other conditions: hypothyroidism, fibromyalgia... and sarc.

Report post

What is the blackbox warning on humira?

Report post

I too got my life back or as I say "control of my life" once I started injecting Humira. Warning- the medicine HURTS. Not the actual needle but the medicine has a lot of phosphorous in it. I've perfected the 'rebel yell' injecting each weeks but really don't mind because I can live my life on my own terms.

Like you bobny I am dealing with osteoporosis due to on and off prednisone for years and a steroid inhaler that I have to be on for sarcoid lung issues. I had ZERO idea that this would be a result of steroid use because i've done weight bearing exercise and eaten the right foods for years. a trial with Fosomax was a nightmare.... pain in all my joints, headaches and stomach/reflux issues that require that I take Nexium and I had never even taken a Tums or Rolaids in my life before. Sarcoid creates hypercalcimia and dives right into the bones for extra calcium. I'm going to wait a few months to give my body a break before trying another oseoporosis drug.

I don't know anything about a 'black box' warning.

Report post

The "black box" warning on the Humira website is a waring that Humira clobbers your immune system and you can get life-threatingn infections. Prednisone does the same thing but not as completly. I am on another TNF, Simponi which sports the same warning. After one year the only problem is a persistent sinus infection which I control with nasial irrigation once a day. The use of Simponi stopped my ever escallating need for larger prednisone dosages.

Report post

This journal entry is closed to replies. We close all journal entries after 90 days.

If there's something you'd like to say, here are some things you can do:

Things you can do