Potential New Treatment!
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katatak1
Posts: 261 Member
Hey guys,
I know someone who knows someone at NORD (the National Organization of Rare Diseases) and they told me this about some promising new drug trials:
I know someone who knows someone at NORD (the National Organization of Rare Diseases) and they told me this about some promising new drug trials:
This information was just presented at the annual American Academy of Dermatology meeting (3/16-3/20 in San Diego, CA). It concerns a broad-spectrum IV antibiotic called ertapenem (Trade name -- Ivanz).
Ertapenem is not a new antibiotic (it's been in use for ~ seven years), and is generally used for certain gram-negative, anaerobic bacterial infections. Apparently, the general thinking about HS was that the bacteria is aerobic, not anaerobic. Also, it had been generally accepted that the appropriate antibiotic therapy for HS had to have an anti-inflammatory property. However, ertapenem does not have anti-inflammatory effects.
Scientists in France took the leap -- looked outside the box -- and administered ertapenem once/day, IV, for six weeks. This resulted "...in a dramatic improvement in patients with severe hidradenitis suppurativa (HS)."
Perhaps this treatment may be helpful for your friend -- it's well worth discuss it with her physician (if not already discussed).
As an aside, the attached article used the term "Six weeks of compassionate treatment..." In general, compassionate drug use refers to the use of drugs for disorders while the drug is still in experimental stages. I don't think that ertapenem falls into the "experimental" category, but it's probably not FDA-approved yet for six weeks of treatment in HS (only relevant if this woman resides in the US). therefore, her insurance company could balk at paying for it.
Also, please let her know about the following patient resource organization (on the off-chance that she doesn't already know about them) --
Hidradenitis Suppurativa Foundation, Inc 15511 Woods Valley Road Valley Center, CA 92082 (No telephone) e-mail: info@hs-foundation.org Home Page: http://www.hs-foundation.org
I've just been in touch with the group's President, Michelle Barlowe. She suggested that this woman contact her at the email noted above for this organization.
As an aside, there are clinical trials going on as I write this, and they are recruiting patients. If this woman is interested, she can call the NIH Department of Clinical Trials (Bethesda, Maryland is where she's calling) -- 1-800-411-1222. She'll start out in a voice message tree but will ultimately end up speaking with a human! They can advise her about clinical trials for HS around the country (or around the world) for which she might be eligible.
Last -- if this woman wants to call me or email me directly, she should feel free to do so. We've got a vast database at NORD, including financial aid resources that may also be helpful in her situation.
(I wish I didn't need to refer to her as "this woman" but it's all I've got!)
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Replies
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Science is so cool. Thank you for posting this!0
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I really expected more comments. This is potentially game changing, guys. If you're in phase 3 and can give up 6 weeks, I think it might seriously be worth it!0
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I have a stage 2/3 breakout going on right now under my right breast... I can't put a bra on so I've called in sick to work the past two days waiting for it to be LESS painful so that I can at least dress it and be dressed to go to work.
I called my dermatologist (Hershey Medical) to make an appointment - hoping I could get it drained or get a cortizone shot which seems to help bring it down quick -- yeah right! HIs NEXT AVAILABLE appointment is July 6th. That's almost a month away folks.
I made the appointment even though it won't help with this particular breakout because Dr. Adams is one of the specialists in HS. He routinely goes to meetings /conferences about this and he is the first doctor that actually knows his stuff (and when I say this, I mean, knows more than I do about it!). He talked of trials and that if there were any he'd put my name on a list (this was 2 years ago almost)... so I'm going to take this information to him - see where he stands on this.
I have been truly lucky (as much as you can be with HS) because I don't get it in Stage 3 very often. Also, I get it on my thighs, my breasts & under my arms, sometimes, but rarely on my jawline. I don't get it in some more hurtful places and usually where I have it I can see it so I can better aid in the closure of that particular breakout.
I hope that there are some of you that will reach out for this. I'm trying to be drug free as much as possible -- but if this turns out to hamper the progress, I think I'd give that up... currently waiting through menopausal symptoms before trying my next "food" possible trigger for HS.0 -
Please do! Let me know what he says, I think that if you're going into stage 3 at all, you should try to get into the trials. I've been lucky (as lucky as you can be with HS, right?) and have never missed any work due to my HS. I have had to skip workouts though. I've never had to get a doctor to drain one either. I've always been able to coax it into draining through the use of warm water and patience. It's painful, but it's sort of like a good pain, an odd satisfaction.
I live in the DC area. I know there are only a few HS specialists in the country, but I wonder how far away the closest one is. I haven't put too much energy into looking because I feel like I don't need one until this gets worse.0 -
I'm taking the leap and scheduling a surgical consult this week. I'm not sure how long I'll have to wait for an appointment. I'm SO nervous about this!0
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I'm taking the leap and scheduling a surgical consult this week. I'm not sure how long I'll have to wait for an appointment. I'm SO nervous about this!
What kind of surgery are you considering? Excision? Skin graft? Please keep us posted with your recovery and story!0 -
SJane - please consider surgery strongly before you go through it. I have heard (and know for a fact myself) that a removed lesion is not the end of it in that area.
I had one removed from my leg right where my underwear hits - and the scar is there and so is a new growth - only I can't work this one out - I can't help it along in any way because of the surgery scar.
Please, please, please, read other people's stories before planning this for sure.0 -
Kat - I don't generally go to the doctor to have mine drained either -- I made the appointment mostly because I was being harrassed by my supervisor because of using my sick days down to the wire... and then having to use my vacation time if I needed to call in sick again. I work for the PA Judiciary and we earn .84 sick days per month, which comes out to 10 sick days per year. Because of dental issues this year, I had used up my "cache" (so to speak) and now I am at the point where I basically have 1 sick day until the end of the month and then I have 0 until the next month... So I went mostly to get a "note" for HR.
I was lucky for quite a few years as well, where I could wear jeans & t-shirts to work so I didn't have to worry too much about dress clothes getting "icky" from drainage and where I could wear a sports bra or some other sort of "barely there" bra that gave me enough support but because it was hidden behind loose, casual clothing, it didn't matter. Now it is necesssary for me to dress up on a day-to-day basis and that is a game changer for me with as active as I this is right now.
I did have my appointment yesterday... so there is nothing really new. The doctor I made my appointment with (the HS specialist? kinda/sorta) was not there and one of the other attendings saw to me (Penn State Hershey Dermatology). Of course, my regular doc is the one who is currently running a drug trial... so I have the number to call to see if I can get in to a trial... but I'm less inclined to get into a trial with "drugs" - I am trying to be as natural as possible these days. Putting a chemical into my body that "may or may not" work doesn't really sit well with me. If I knew for sure it would work, I'd sign on immediately (I've dealt with this for 30 years!) - but for a trial - hmm... I've got to think this one through. Do I want to put my overall health in jeopardy for my skin? Maybe yes. Yes, it has been a horrible experience... and yes, I'm depressed over it many days... and yes, I don't have a man in my life mainly due to this... and yes, it does stop me from doing some of the things I'd like to do... but, what if... what if the drug we take to get rid of this causes some other issue... like your hair falls out... or causes breast cancer... or causes diabetes... or MS .... or something even worse than the HS....????????? I'm thinking "better the devil I know". I'm still debating this in my head of course.
The worse part of this is the humiliation that I have to go through explaining myself to various supervisors... why I'm sick... I mean really, I don't have to tell them but if I don't explain Something... then I'm made to feel as if they believe I'm LYING about being sick.
Folks here in the US - if you work for a big enough company and you have FMLA, get the paperwork from your HR representative and get it filled out by your physician. FLMA has a section for long-term disability issues... where there are flare ups that cannot be predicted. If you have this paperwork on file with your employer then you can NOT be harassed by your supervisor for calling in sick when necessary. Not that they ought to harrass you anyway, but I happen to work for a B!tch that thinks she is Queen!0 -
Charlie,
I didn't even think about getting this all laid out with HR and FMLA. Thankfully mine isn't too bad at the moment, but you never know how things can turn. I should definitely do that. I hear you on the dental thing too. I've used my dental so much this year that I've officially run out of services. They can't do anything to my teeth now unless I pay full price, out of pocket. Luckily I get a few more sick days than you though, and my boss is pretty accommodating when it comes to making up missed hours. If I need to save my sick time, he'll let me come in early or stay late so I don't use up all my leave. Plus, it works out for him because he doesn't miss out on any work from me.
I guess the reason I'm more hopeful about the new treatment and less concerned about side effects is because it's not a new drug, it's just a new application. It's an antibiotic, but it attacks anaerobic bacteria instead of just aerobic. I'm also less concerned because they have done successful trials in Europe. If it was an entirely new medication, though, I'd be right there with you. No one wants to fix one thing just to break another!0 -
Kat
I also highly reccommend against surgery. I had surgery 12 years ago and I still live with this. And it was probably one of the most painful experiences I've had and I've had a baby via c-section.
When I had my surgery they talked about removing all the hair follicles but they ended up not doing that. I honestly dont remember why. They ended up just clearing out a bunch of tissue, stitching my up funky and sent me home calling me cured. As I said that was not the case.
It will not make it go away. I have awful scarring and lumps in my skin where they didnt stitch it straight. They recommended plastic surgery if I wanted to make it "pretty" again. Yeah right. I used to hate how my skin looked (when it was outbreak free) but now I just accept it and it doesnt bother me anymore.
Examine all your options. I know its really hard and we are desperate for a quick fix that modern medicine should be able to provide. But surgery isnt the answer and the "recovery" process can be worse than anything imagined.0 -
I think you might have aimed that reply at the wrong person. Did you mean to send that towards SJane?
I have absolutely no intentions of getting surgery. This new treatment is non-surgical, it's an IV drip of antibiotics, and at the moment seems to be pretty promising. I'm not looking for any quick fixes.0 -
Check out this new study: I am going to be a part of this through Hershey Med - Dermalogic Associates. http://www.drugstorenews.com/article/abbott-study-use-humira-patients-hidradenitis-suppurativa
I go for my first meeting on October 5, 2012.0 -
OK - so I'm vacillating back and forth on this drug trial. On the one hand, I could lighten my HS symptoms and lessen the breakouts... but... really, how often do I get them...? Not too often that I can't "deal" with it. Yes, it is horrible but this drug is NOT GOING TO CURE it.
On the other hand, I am trying to not put chemicals and drugs into my body. I'm not 100% on this because it is so very hard in today's day and in my rush-rush life... I do very well in making most of my foods, but I do end up getting bread at the store - which needs to be frozen because it has no preservatives - and I only go through about 1 loaf every 2 months or so. I do buy protein powder which is definitely NOT 100% natural. It is quite natural, but still has been processed quite a bit. I also use Hemp Protein powder but again, that needs to be processed..
But, I am generally against taking in something that will only "partially" "possibly" (not even sure) help to lessen the load of my disease.
I think I just talked myself out of it... (not to mention the shots in the stomach every week) - I will allow others to take the trial and see how it goes for them... the side effects of this drug make me too nervous. It doesn't seem like it will change the quality of my life enough to make a difference. If that can be proved differently, I'm bound to change my mind... but right now I'd best just leave it alone.
Other folks should look into this if it is something they can do for themselves.0 -
I guess the reason I'm more hopeful about the new treatment and less concerned about side effects is because it's not a new drug, it's just a new application. It's an antibiotic, but it attacks anaerobic bacteria instead of just aerobic. I'm also less concerned because they have done successful trials in Europe. If it was an entirely new medication, though, I'd be right there with you. No one wants to fix one thing just to break another!
katatak, thank you so much for posting this. I stumbled over it on my own just before Christmas while Googling for HS breakthroughs, and trying to find out more about it brought me here where I've decided to join because there seem to be lifeforms present who are intelligent as well as caring and sympathetic.
Offhand, I'm not optimistic that this treatment is within the realm of things my doctor currently can or will do for me, for a number of possible reasons. I'm also not optimisitic that the specific treatment is doable for me since ertapenem is an IV antibiotic and doesn't come in oral form. I'm badly squeamish about needles and won't be giving myself shots at home, and I'm going to faint with surprise if anyone's going to pay for me to be in care, or even for me to show up at the clinic to have a daily shot, for the duration of treatment. I should check on all that before I'm too sure, but I'm already on disability, and my limited coverage apparently rules out a good many of things including the dermatologist I've so desperately needed to see for years and haven't been able to afford or get referred to, even when my condition perplexes my general practioner. (In fact, even my partner's medical coverage doesn't provide for a dermatologist, to the best of my knowledge).
What makes me hopeful about this is, as the authors of the study seemed to say in so many words, is that having put down some cases of HS hard with a single antibiotic treatment as they reported doing, should perhaps make some of us reconsider the role that microorganisms might play in HS. I know that might sound strange, since a variety of antibiotics continue to be recommended and prescribed for HS, but HS seems to be kind of this corner unto itself where things get swept off to. It's hard to explain, but maybe I can illustrate this from experience:
For the first 5 1/2 years of the 10 years I've had the lastest crop of HS, my doctor and anyone else who got a description,of the suspect responded to it as some kind of infection, recommending antibiotics and antifungals (none of which succeeded, and typically Lotrimin quickly began to cause flare-ups instead of soothe them). 4 1/2 years ago, my partner tried Googling for some kind of hope and came across the description of HS which we took to the doctor who confirmed the suspicion.
From that very moment on, the most respected advice says it's all just a big pimple - now I had some kind of "inverted acne," I'm "too hairy" and my hair is blocking my pores - and the obvious thing to do is to take a 5-alpha-reductase inhibitor, namely spironolactone. Aside from doxycycline purely for its mild anti-inflammatory properties, no one has talked about antibiotics ever since the HS diagnosis. Not that I fault my doctor because the situation would come from higher up the ladder I'm sure, but it's as if the HS diagnosis just changed the subject of antibiotics and infections completely, and nothing has been done about the HS ever since I decided to stop the spironolactone because of some alarming events that may have been side effects of it.
The downside of having a perfectly respectable caregiver who is not even going to think about anything that isn't documented to death became apparent when when I Googled the class of agent and discovered that I might already be taking as many as a half-dozen herbal 5-alpha-reductase inhibitors, because the doctor just scoffed that any even existed instead of helping me screen for possible herb/drug conflicts, or understand how the whole class of agent might fail to help me. Even though I didn't use them intentionally for that purpose, I took them for long enough in what would otherwise be significant doses. I've also taken a great many antioxidants as responsibly as possible the past few years, and whatever they might have done for me, improving the HS beyond the normal chronic state of discomfort wasn't one of them.
I also tried zinc gluconate after seeing it in free preview pages from a specialist work on HS that's impossibly priced even on Kindle. I didn't know of a study prior to the Dutch study that had tried less than the 90 mg / day of the 100 mg / day considered safe that that's used in the Dutch study, so I tried 30-50 mg daily. I could try again and do exactly as they did, but larger doses make me feel ill. According to authors of the study, though, zinc is also a 5-alpha-reductase inhibitor. In the past several years I've also tried turmeric and also the extracted ingredient, curcumin . Dusted on topically, there was some relief in irritation deeper below the surface, but the surface tissue got more inflammed and painful, and weepier. Internally turmeric give me stomach discomfort and curcumin quickly gave me symptoms of internal bleeding and the tendency to wake up with a roaring nosebleed every morning. Each of these side effects stopped as soon as the treatments did...
But that is yet another maddening aspect of HS, that everything can take six months to see real results... or lack of them, and no one wants to cloud the waters by trying 6 new treatments at once and then trying to guess which helped and which made it worse... so just trying two new remedies that fail means yet another year is of life gone and HS still isn't.
Maybe the work with ertapenem can help change the subject back to antibiotics and infections, because if that's really what needs to be addressed, I guess the lack of results for many people in the meantime isn't that surprising.
I'm mainly new to most HS resources and would be happy to be pointed anywhere that unburdening myself about it might help motivate reseach - I'm sure I can go into more extensive detail about how much fun even my normally relatively pleasant case of HS hasn't been. I'm a little afraid that around here I am just preaching to the choir, but I wonder if anyone who doesn't suffer from it really understands half of how debilitating even a minor outbreak can often be.
I'm still strugging to understand exactly what it might even mean if it were true that HS should be thought of as microbial in nature, if I'm not getting ahead of myself there. Would it be a bigger research priority if the fact were that anyone might get it?
On the other hand, maybe I should take it as a silver lining, because if that is indeed the nature of HS that needs to be addressed with treatment, the organisms involved are already getting some attention, because they're causing plenty of other illness already? I'm seeing where they're even looking at non-antibiotic means of dealing with some of these increasingly resistant disease causing organisms, and also ways that simple natural products can help conventional antibiotic treaments - apparently there is something in tea for example that might be helpful with some supervision. The only way that a lot of it could get much more exciting is for someone qualified to come along break it down into practical instructions for HS patients now.
Should I be more patient with doctors instead of tearing my hair out, seeing what a kind of a mess of critters this may actually be, stuff that can keep changing the rules through new acquired antibiotic resistances, things that might have been for years thrown out of cultures that came back "clean" because nobody realized they were pathogens, helping to future confuse their possible role in HS?
Could it be part of why everyone's experiences with treatment can be so frustratingly different, is because the microbial populations of their condition might not be exactly alike, and could even change over time in an individual? I have one popular remedy for HS after another either work the opposite of how it worked on someone else, or one after another than works the opposite on me one week than it did the week before. Witch hazel, for example, used to soothe this - then one day it suddenly became an irritant ever since. Same with talcum, benzoyl peroxide, etc. etc. I'm mostly afraid to try anything anymore because if it doesn't help, it probably cause a flareup that will take the usual 30 days to return to the normal state of minor misery while I do absolutely nothing for fear of irritating it further. I seem to remember getting antibiotics that seemed to help bring down serious swellings, but I never had an antibiotic that has ever decreased that 30 day recovery time from a flare-up, it's always the same with or without antibiotics.
Could this "model" of HS eventually explain most of the seemingly random and unconnected and unexplainable things we go often go through, or lead to more accurate and effective use of antibiotics for HS?
...Or should I just be thoroughly ticked off that doctors have a let a staph/strep infection rage on my tender parts for 10 years now right in front of them, and almost seem to be happier to do so now that it's considered HS? I'm beginning to believe that I may be having other consequences of HS going on including circulatory problems and now arthritis, and possibly others, that might be linked to the infectious presence. (This provides new challenges - the doctor insists regular excercise is vital because of the circulatory issues, and has no idea about how easily the fear of chafing setting off a new uncontainable outbreak overnight can cancel a walk in the park on the most gorgeous day, and now the knees have been feeling like the exercise may be doing more harm than good lately on top of that).
That brings me to the next thing, which is that although I fervently hope that this research will be a game-changer, is that so far I haven't been able to find any follow-up on it. One study, I think, where researchers got out some stored samples and tried to inventory the microbes present with many of them being the same species as those in the study by the researchers who worked with ertapenem, but I really haven't found where anyone is standing in line yet to set aside the pimple concept, so to speak. (Honestly, it bears some unpleasant resemblance to about the most ignorant thing that could be said to someone with HS, "Quit your whining, it's just a pimple"). I'm also tempted to disagree with the pimple concept because I have late onset HS, such that my testosterone was already waning noticably when the HS appeared and began raging (my last lab tests at last confirmed the low testosterone levels, which were the only abnormality detected).
Oh, and one thing where I probably could use some support because this is driving me crazy, lol - I'm a long-time smoker, and as everyone knows, my doctor, my partner, anyone, just ask them - my HS is all my fault because I smoke... or at least it has been, since the HS diagnosis. Before that, back when it was a mysterious infection of some kind, that wasn't my fault because those can happen to anyone regardless of whether they smoke, but the minute I'm officially a HS sufferer, everything is (again) somehow very different, as if now being ill is some kind of lifestyle choice that I made, as if I'm enjoying having HS or something.
I'm about to kick the next person in the shins who tells me I should kick the habit as if somehow they are the very first person and not the 10,000th to tell me this as if tobacco doesn't have warning labels, and not once in 10,000 times has this ever been appendaged with "- and here's how you can do it" or anything else the least bit constructive. I haven't found it constructive either to be beaten about the head with the "Q word," quit, quit, quit... Not until I came unglued in the doctors office after being a basket case from trying to quit, did I ever hear anyone actually use the "D word," decrease, even though that would obviously have been a good start the whole time.
I have made efforts - the doctors assured me if I would have surgery on the pilonidal cyst that raged for 20 years, the HS would disappear because the extensive sinus tracts appeared as if they might be linked to it; the surgery had complications (including unexpected and dangerous infection despite taking the prescribed antibiotics religiously) but I endured it in hopes it would help. It certainly helped the pilonidal cyst, but for the HS, no improvement. I haven't worn a pair of jeans in 10 years, all light cottony baggy well ventilated and poorly insulated clothes, because they said it would help, but no improvement. HS is linked again and again to obesity - oh yeah, I forgot, HS is also all my fault because I like cookies - so four years ago I waged an insane battle to get my weight under control for the first time in my life purely through excercise and calorie restriction, and aside from a little too much flab and too little muscle, I finally won - and more amazingly, for the very first time I ate less junk without smoking more as a direct result - but no improvement in the HS.
Let me guess, if I quit smoking, would there really be any improvement in the HS, and haven't I been promised improvement thrice too often already? (In fact the Internet seems to be brimming with people who want to make me promises about HS that any HS sufferer should probably be skeptical of, typically in return for $).
(Oh, and guess how happy a camper I was to Google the side-effects that seemed to come with the spironolactone, and in the process accidentally discover a support group with a huge thread of spironolactone users who seemed to be unanimous that an even lesser known side effect was that it made them put on 20-30 pounds and made out, every last one of them, as if it wasn't coming off - right after I'd just fought so hard to take off 50 pounds that I still afraid I'll gain right back and have zero experience with keeping off).
I don't want to say to anyone anywhere to ever go ahead and smoke, I'm at the point where I'm ashamed to smoke in front of kids for fear that a one of them might ever imitate that, it's such a horrible habit. I'm not determined to continue, but I haven't been able to quit, or even cut down consistently. I've been the one to bring up all kinds of cessation methods with the doctor over the years although none really seemed like a good fit and the doctor was the one to veto most of them. I did make an effort to cut in half overnight, I was so determined to do anything to improve my HS. That effort blew up in my face after a six week parade of nicotine withdrawal symptoms starting with three days of diarrhea (now I've shared too much, sorry). I've ended up convinced that something is going on in my body that is badly exaggerating the nicotine addiction. Even after that six weeks of getting used to all kinds of discomfort, there was zero chance of me going cold turkey at that point. I tried anyway and day one got so horrible that I haven't been in a hurry to try again since.
That really isn't the point, though... Shouldn't doctors feel just a little silly if they've preaching to me about smoking until I could scream, while they've letting known virulent pathogens have a party in my tender parts? I'm not sure anymore that smoking, as bad as it is, is really the thing I should be most worried about, ever since this article woke me up from beating my head against the wall wondering why spironolactone-like agents might be failing me one after another, and alerted me to what I should have known before I knew I have HS - that I may have a whole arsenal of toxic and destructive enzymes aimed at me by little "guests" that IIRC could do a person in far faster than cigs.
Not to freak anyone that suddenly their HS has become contagious, because it sounds as if it's stuff that lives everywhere already that a person could contract from every object in creation as easily as from a HS sufferer, and I can testify that my partner has never contracted anything resembling HS it 10 years of close contact with me and my usually weepy mess, but I want to emphasize that very important question - given the right conditions, such as maybe a compromised immune system and some type of minor injury, isn't HS something that could technically happen to anyone, that more people should therefore be concerned about? Maybe in some very real sense, HS isn't a "rare" disease at all?
Well, there's half my life story plus a few of my stupid questions, both of which I never intended to write here...
If I've posted anything ignorant or misleading or in appropriate here (or all of the above), please don't let me get away with it. It's bound too happen because I'm having to get my head around too much too fast lately, but I need to get all the facts straight that I can. Somehow it's not right I or any other HS patient should have to become a molecular biologist or infectious diseases specialist (these are things I know nothing about) just so I can ever wear a pair of Levi's again, but, er... um... who else have I got in my corner at this point except the horribly unqualified Dr. Me?
Anyway, If ertapenem can eventually be used to help treat that funny thing that seems to happen to doctors when they find out you have HS, truly it is a miracle drug. :-) Thanks again for posting this! It deserves far more than just the sound of crickets in reply.0 -
would like to know if this treatment is available in canada yet, i have stage 2 and get flare ups daily running out of ideas0
