I am on Humira for HS. I had no insurance but since my income was so low last year the drug company approved a one year supply for free even though its not 'approved' for the treatment of HS.

Let me tell you though....its a miracle drug.....it really helps. The lesions are still there....they still drain.....but the inflammation and pain is virtually gone. That really sick, feverish feeling I had all the time and took ibuprofen like candy because of is gone. I barely have to take ibuprofen anymore.

This medication was totally life changing for me. But I just hope your insurance will cover the cost.....if you pay a percentage of the prescription or what i'd find out what your coverage is now. One injection without ins. is about $1200 bucks.....and i take one injection every 2 weeks.

Hope you get approved....

Dus

Thanks for the information it was very helpful. Just waiting for the response from my dermatalogist to find out if they wil pay. I really need a miracle.

Hey Dust, I really want to try this as well, but do you have any side effects,? and do u give yourself the injections?

Not really any side effects. And yes they are like pens. You place it on the skin and press the button and the medicine injects itself to the correct depth or whatever. Its easy.

There is a clinical trial for HS with Humira starting all across the US and Canada. To find out if there is a location close to you. You can go to clinicaltrials.gov and search under hidradenitis suppurativa humira and it should come up. The best part of participating in a clinical trial is that you get free doctor care, medication and they do more bloodwork and you get watched closer than you would if you just went to the doctor and tried to get on it. My friend participated last year in Atlanta, GA and she is still on the medication with no problems and is sooo much better. I am on the waiting list for the study this time and it starts next week and I am so excited.

I just went on the site and it stated that the studies or complete. My doctor did not tell me that the test trials offered free medication. She is saying that my insurance will hopefully pay for it.

IT is NOT a miracle for me!!!

In fact it made mine worse.

I only took Humira because I also have a rheumatic disease called Ankylosing Spondylitis. These drugs were made for Rheumatic disease initially. They are now being tried on almost anything inflammatory in nature. Though it is not yet approved for HS. The thought is you have too much TNF factor in your blood and the med attaches to the TNF and neutralizes it. Thus reducing symptoms.

Even in the diseases they are initially created for, they do not always work. In fact the fail rate is about 50/50. But with RA or AS for example there are several other TNF drugs available and you can try again til you find one that does work.

However, these drugs weaken your immune system and one must be careful. It can be harder to fight infections. It is noted on the Medscape website under Hidradenitis Supportiva in Emergency Medicine that though HS is rarely fatal, it could happen if the HS progresses to overwhelming systemic infection and you have a compromised immune system.

I will say, My Rheumy and my Derm both say it is okay for me to try another TNF drug. And if I can line up the right support to help pay for it, I will. For the AS. (Never would I do this for the HS) Both docs said if the HS got any worse, we should halt the TNF drugs.

Most have initial success but it has come back on many. I suspect because it does neutralize the disease but then also weakens the immune system. Which, okay for RA or AS not infected skin lesions due to HS.

Remember everyone is different. It did not work for me. It might for you. The real question is how much are you willing to risk and or pay? Considering it might not work. Humira averages a total cost of $1800/month for injection every other week. Which you do yourself. You can use a pen or a syringe. The syringe is best if you have a latex allergy. Also hurts less. Especially if injected in the stomach, which some fear. Insurance will cover some and Abbott has co-pay assistance available to help as most insurance will not cover near all of it. You can google Humira and find it. Some insurance companies will not pay for it for HS as it is not currently approved for it yet? Will depend on the outcome of the trials that were done.

For me I was almost in remission. I was down to only 1 active monster in my groin area for almost 2 years. No new ones in that period. After using Humira I now have several active monsters and one very nasty abscess under my breast (where I previously have never had any HS before) the doc says that it got out of control so fast on size and infection due possibly to the use of Humira. He said it is most likely staph, but could be MRSA. Will know on Monday. Until then, no Humira. Which is the basic guidelines for all TNF drugs. If you have any active infection you should not start Humira or you should not continue Humira until the active infection is gone. Trust me on that. I started it last year and did not know I had an infection. But they say I must have as I took my first injection I got 3 infections that lasted for 9 months. A UTI and 2 other below the belt infections. They said I threw gas on the fire. Which is why you never start it while sick.

It just seems to me it would not work well for HS. But I am not a doc. I honestly think they should try some of the newer biologic drugs they are just now studying but they should not steal from other disease profiles and instead find one specifically for HS. But to do so a lot of genetic testing would have to be done first. To see if all of us with HS have a common gene which would associate us. I am not doubting it can work. But I think it needs to be geared more toward HS and not Rheumatic disease. But research goes where people want it not where we want it. Unless we can come out and tell everyone what we have and what it does without shame, and promote awareness, we likely will not see specific HS drugs for some time. Unless we get lucky and a genius doc takes an interest. Which I pray for everyday. I say all of this as I met the lead research doc on AS, which I mentioned I have and he discussed in our support group how involved it was to get the first TNF, Remicade for people with AS. But he also did the genetic research. Now others are trying the drugs for other things. Sometimes it works and sometimes it does not.

I would like to reply to ladyunluckyinpain and just say that though she is right in alot of things, she is not necessarily correct whe it comes to Humira and HA. I am in the health care profession and I have seen first hand on how Humira has helped my friend and others. I am uncertain why the clinicaltrials.gov stated it was closed which may have been the phase II study but phase III starts tomorrow at my doctors sight in Atlanta and my appointment for participation starts next week. She is correct in saying that Humira doesn't help everyone and it can and will weaken your immune system but there is not currently any other medications indicated for HS. Humira does help and it is not as useful taken every other week like it usually prescribed and that is why the study is on every week dosing and that is the dose that my friend is on and has been on for over a year and she has not had one bit of problems. She use to sleep naked at night on her bed covered in towels and then take them off and put them in the washer before going to work everyday due to the bleeding and draining and she hasn't had to do that in over a year. I say the good outweighs the bad and no one she was in the study with withdrew or left due to any problems and she said everyone is still taking it even after the phase II study ended. I know some people have alot of problems and not everything works on everyone but mark my words, once humira is approved for the HS all the other biologic medications like remicade, enbrel,etc will all jump on the same ship and go for indications to. Like I said we all know antibiotics and accutane don't work and in a study all your medication, bloodwork, doctor visits are free and right now I can't beat that. I will keep you all informed and good luck to ladyunluckyinpain in finding something that works for you.

Let me say too that Humira helped me a lot...and others on the forum here as well. But true it may not help everyone and maybe some of that depends on what other illnesses or diseases you may have. As I do not have RA or anything else inflammatory....at least nothing that has been diagnosed since I can't go to the doc that much.

The drug company approved a one year free supply based on my low income.....I don't think my dermatologist 'lied' since he told me when I applied that I very well may not get approved....but they gave it the ok for whatever reason.

Again this drug has greatly helped me. Since I was always in a constant state of infection anyway....whether on antibiotics or not...mine was really to the point of trying anything; luckily for me Humira helped.

Dus

Are the trials in any other city besides Atlanta? My doctor mentioned it, but never said where it was being held. My doctor is still trying to see if my insurance wikk oay for it which makes no sence to me because everything is free in the trial.

I went to the clinicaltrial.gov site and was unable to locate any ongoing or future trials. Is there anywhere else I could look. I searched under hidradenitis suppurativa humira.

I wanted to say, that HUMRIA did not work for me, infact i was rushed to the hospital with stroke like symptoms 3 days after the first dose. Wile in the ER the physcian explained to me to stay clear of anyone with any live vacinations. This being flu season I was unable to leave my home, he had explained to me children that go in for any vacinations that are live, older people, dont matter, im to stay away from them. He did tell me my immune system was low and by the time I hit the hospial with this reaction, if I would even get a cold he was saden to say I could be fighting for my life, The doc shook my hand and instructed me to to call my derm. and have me removed from this med. When I called my derm, she disagreed, and told me to take a vitamine C it will help.

In trying for disablity I was unable to go agasnt my derm at this time. 2 weeks later she told me to take another shot. AGAIN a reaction. There comment to me was well it dont work for everyone. But im thinking to myself While your out expermenting on us to try your new drug how many are dieing. Then i found out that after 10-15 months on this drug there finding organ shut down in some patents. I dont , and will not be a ginny pig. They took me off the Humria finally and would you know it, 3 doc since I been seraching for releaf said sorry were not sure what to do other then continue to stick you with needle in the site as they continue to come. But call us if you need us. Yea I see a dark future and no one I found yet hasnt thowed there hands up on me to say well fight if you will. Kinda makes ya wonder.

I am sorry that the medication did not work for you, but I a wiling to give it a try, even if it is a slim chance that it might work. Right now anything is better than the constant pain and discomfort I have every day of my life. I started my first dose yesterday on Friday and so far so good. Other than slight tenderness at the injection site it's going good.

This is one treatment I could actually qualify for. Why don't they ever hold these clinical trails in Texas?

i was approved for Humira only after trying every other drug known to man for the last 8 years. I was approved for taking it Oct of last year. I didnt really see a HUGE difference until March of this year. I did have more episodes of cellulitis after starting the medication. I was down to two problematic wounds that required IV antibiotics for 40 days which sucked. But I made the executive descision to have those areas removed. On May 5 I had 2 inches of breast tissue and two inches of rib tissue removed all along the underside of both my breasts. When I was off the Humira for 1 month to heal I had problems with my groin so we increased my dose to 1 shot a week instead of every other week. I was able to get the groin to just a few and decided that on Oct 13 to have both sides of my groin and let me tell you I am owie free!!!! Not even one is plagueing me today. I have been off my Humira for about 6 weeks now and am doing really well.

I did get a yeast infection on my stitches on both sides bc i cant spread my legs far enough to keep the area dry well. BUt its a small price to pay for relief.

Before Humira I was NEVER a surgical candiate bc I didnt have it in centralized locations I had it everywhere. I am owie free today!!!I was approved with my insurance after I paid 1500$ out of pocket. So I called Humira directly and they have a Protection plan they offer for those that have insurance. It pays up to like 750 towards the first month and 300 towards every one after which completely pays for my Humira. I have a 5$ copay. $5 is a small price compared to 1500$. I know they also offer a plan for people without insurance and they offer free medication for those in the low income bracket. Please be sure you talk to your dr and make the descision that is best for you.

My immune system has been lowered and I now have to take TB treatment bc I was around someone with active TB and ended up getting Latent TB. I know this sounds scary but to me it was a small price to pay. I am not active TB which is scary and only like 3 ppl with HS have ever gotten active TB after taking Humira.

As I said it is a very personal descision that should NOT be taking lightly but it can work for some. For me it is my MIRACLE. I hope this helps.