Hidradenitis Suppurativa USA

HS-USA

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FDA WARNING FOR Remicade, Enbrel, Humira , Cimzia, and Simponi

Posted by rick on September 21, 2011 at 11:45 PM

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11 Comments

Reply Sophie Grace
2:56 AM on December 27, 2013 
Princess Ebone says...
My derm doc really wants me to participate in a Humira clincial trial next month for my HS. My husband told me to call my primary doctor and see what he thinks. This FDA warning has me a little nervous to participate now.


I was on Humira for HS and PsA. Had horrible lesions in my groin area that would not heal for months. After a week on Humira my skin was completely clear. Like I never had HS. Scar tissue was barely even noticeable. I had to stop after 3 dose due to a histamine reaction (itchy welts on injection sites) and I am now on Simponi which has also garnered the same results, but within a longer time span (4-5 weeks for clear skin). I will say that once you get off biologics HS comes back with a vengeance. It's a long term commitment but in my personal case, the benefits far outweigh the potential side effects. I've had HS almost my entire life. It was getting so out of control it was literally affecting my quality of life. I just wish it hadn't taken over 40 specialists nearly 20 years to come up with a solution. Good luck to you and may you find remission soon.
Reply Amber
10:37 PM on March 19, 2013 
Im starting my second week of enbrel...
let me just say this drug is a MIRACLE for anyone with HS!
before i got on it i could barely walk... they were constantly draining and everytime one would start to heal it would just fill back up again and drain!
after just ONE week... most of them have healed over none of them are draining anymore! most of all NO MORE PAIN!
there's still a long way to go with it.. they didn't disappear i still have them but they are healing which is something that hasn't happened in 9 long years!

im still on a mission to spread the word about hs

I honestly have never felt this good in a long time...
enbrel has given me my life back!

Reply rocky
11:29 PM on April 11, 2012 
Colleen says...
I do not believe that any oral medicine helps. I am having surgery again and I want to go with the radiation, has anyone here tried it?

Hi ,This is for people who are trying for radiation as an option to treat hidradenitis,but im sorry for me it didnt worked at all , i didnt mean that it may not give good results to others but as i had it recently with no good to me, im going for surgery in a weeks time ,and i think thats the only way and its easy too just removing the infected skin ,replacing it with a flap with primary closure and thats it, al you need to do is to see a good surgeon and thats it. I hope and wish all those who are suffering from this disease and others too will get better soon. Take Care.
Reply Dave in Ohio
8:21 PM on January 29, 2012 
13 years or so ago, a middle-aged man had *electron beam radiation* treatments to kill all the hair follicles in his crotch. In HS support groups, he went by the Net nickname of "RadiationMan". By approximately 2004-05, he was still doing pretty well but then he had a nasty argument with another person in an HS email group and dropped out of my sight. I have not seen or heard from him since.
A couple of others have tried getting their hair follicles killed off. One woman had results that were not so good and the recovery time was VERY long and painful. Another younger woman (in the military) claimed she had found a medical doctor's assistant who wanted to try electrolysis to kill off all her hair follicles. The HS woman dropped out of the group. We never heard any follow-up. I suppose it either worked well or was a terrible failure.

Personally, I would not touch Remicade or the related "biologic" drugs (also called "chimerics").
They inhibit TNF-a (an micro-enzyme) from being produced. Turmeric does too, but mild doses of turmeric does not seem to kill off one's immunity like biologic drugs do.
Me as an example: I have not caught the flu in the 4 years since I started eating turmeric for HS and my allergies are less of a problem. I have found other good side-effects as well.
Reply Tee
10:56 PM on January 17, 2012 
Thanks Rick!

rick says...
Tee, in general, 50mg of Zinc and 500mg of Turmeric daily!
Reply rick
8:12 PM on January 15, 2012 
Tee, in general, 50mg of Zinc and 500mg of Turmeric daily!
Tee says...
Those people that use Turmeric & Zinc how much of each do you use and how often?
Reply Tee
6:06 PM on January 15, 2012 
Those people that use Turmeric & Zinc how much of each do you use and how often?
Reply Colleen
9:58 AM on January 3, 2012 
I do not believe that any oral medicine helps. I am having surgery again and I want to go with the radiation, has anyone here tried it?
Reply robin
3:21 PM on November 6, 2011 
I refuse to allow my child's doctor to put her on this. She wants to start it next month to see if it will help. Im going to start with the tumeric and zinc first. The predisone gave her stomach aches and severe mood swings.
Reply Princess Ebone
11:15 PM on October 5, 2011 
My derm doc really wants me to participate in a Humira clincial trial next month for my HS. My husband told me to call my primary doctor and see what he thinks. This FDA warning has me a little nervous to participate now.
Reply Dave in Ohio
11:28 AM on September 30, 2011 
Turmeric (curcumin) inhibits some of the same kinds of inflammation chemicals in cells as Remicade, Humira, and the rest . But, turmeric does not seem to kill off the patient's immune system like those modern Rx meds do. Personally, I regard turmeric as one of nature's gifts to safely inhibit inflammation.
Here is an article about turmeric in combination with another herb that is used to fight inflammation and pain. I hope it helps somebody...
www.foxnews.com/health/2011/09/28/herbs-beat-pain-drug-in-study

I suspect the specific product "BCM-95" is not required. Ordinary turmeric would probably do the same thing (and be much cheaper) if added with Boswellia. Some formulas also include Bromelain (an extract from tropical flowers related to pineapples also known as "Indian frankincense").
A word of CAUTION - - One should also expect, as more ingredients are mixed together, the chances of finding stomach upsets and possible allergic reactions will increase. Be careful with this kind of stuff folks. First and foremost, do no harm to yourselves. Take precautions and DO your research well before eating or taking ANY of these things into your body.