My Life with Hurley Story
My Hidradenitis Suppurativa Story
l believe the best way to start is with a description of the disease - and this is my description of the disease, based mostly on my experiences, but also drawing from the hundreds of medical articles, forums, and discussions I've had the pleasure of reading over the past decade in my attempts to understand and manage my disease better. Hidradenitis Suppurativa (HS) is a chronic skin disease, in which pus and blood-filled abscesses form under the skin in the groin area, inner thighs, armpits and under the breasts. These abscesses can range from the size of a pea to as large as baseballs. They grow in size until they are close enough to the surface of the skin, and may break open. When they do, they either do not heal at all, or take a very long time to heal... I'm talking years. As open wounds, they constantly leak blood and pus. There is nothing more horrid than the smell of an HS wound, trust me. They are extremely painful, if you can imagine. Large abscesses can often restrict your ability to move your arms, if they are located in the armpit, or restrict your ability to walk and make it vert uncomfortable to sit, if they are in the groin or inner thigh area. With all that being said, you can imagine the shame and embarrassment such a condition can bring to a person. An individual with this disease can be extremely self-conscious and depression is very likely as well. There are some points I'd like to stress before I move on to my personal experience with the disease.
HS is NOT contagious.
It is NOT the individuals fault.
No one knows why this happens.
HS has NOTHING to do with a person's hygiene.
HS has NO cure!
My HS started out as small pus-filled bumps on my groin when I was around 15 years old. These were easily popped open and were not painful. They would come and go. They were a nuisance, but were not totally alarming. I did not know I had a "disease" at this time. I did not seek medical care. I was about 20 when bumps started appearing around my breasts. These were larger and had to grow a few days before I was physically able to squeeze them out. The pus was generally very dry, like something that would come out of a pimple on your face. It would quickly shoot out and splatter onto the mirror or whatever I was in front of. I mention this only to illustrate the change in consistency of the pus over time. They would heal, but always come back. Same spot, same size. Seeking help was difficult. I didn't want anyone to see. I can remember going to a walk-in doctor who prescribed a topical cream to rub on them. That didn't help. Eventually, the pain was too much to bare and I was forced to go to the emergency room. I went in the middle of the night. I had an abscess about the size of a quarter on my chest, between my breasts. It was so painful, I couldn't sleep. I had my first I&D (incision & drainage) that night with a very nice doctor. After he had cut it, he told me a nurse would come in to "pack" the wound and that I would be set up with home care. I didn't know what "packing" meant at that time, so when the nurse came in and simply covered the wound with gauze and tape, I thought I was good to go. That specific wound came and went over the years but it would easily break open after a week or so, and the pus and blood would pour out, like syrup, messing up my bra and clothes.
I went to a walk-in maybe a year or so later who I could tell really sympathized with me, but truly didn't know what to do. She referred me to a dermatologist. I waited months to see her. When I finally did, she was cold towards me. I didn't feel like she cared as she told me there was no point in treating this externally (I was hoping she would cut one or two open to give me some relief). She told me the only way to get rid of this was to do it from the inside. She prescribed me some pills (probably an antibiotic). I asked her if it had worked for others, and she nodded yes and she scooted me out. The pills she prescribed did wonders for the acne on my face but absolutely nothing for my HS. I was told to come back and see her in three months, but I never did. She didn't care enough.
For a long time, I just waited for the lesions to grow large and break open on their own. There's one that I actually tried opening with a needle (DO NOT DO THIS), and of course I just made it worse and probably make it stick around a lot longer than it would have had I just gone to a doctor. I had started working full time when I began getting abscesses on my upper leg, extremely close to my groin and bottom. This was extremely painful. I had to find creative ways to sit on my chair without drawing too much attention to myself. There were many days I wouldn't even sit. I would just do type on the computer standing up, pretending like I was only checking something out on the computer and would have to leave in a second to do something else. The days in which I did sit, I learned I needed to sit on my jacket or sweater, in order to not stain the chair with the drainage coming out of my open wounds, seeping through my pants and onto the furniture. I often walked funny, trying to avoid feeling the wounds rubbing against my pants. If anyone asked why, I just told them I had a problem in my leg.
It was a Sunday night when I decided I needed to see a doctor to drain one lesion on my inner buttocks. My mother took me to the emergency room. When the doctor had seen how large the abscess was, and the others that surrounded it, he called for a surgeon to come and take a look. The surgeon told me that I needed surgery, but because I had eaten dinner that night, and she and her team had already had a long day, I agreed to come back in on Wednesday for surgery. On that day, while the surgeon was briefing me on the surgery, I asked her if she didn't mind also draining a lesion under my arm. When I showed it to her, she couldn't refuse. When I awoke from surgery, she mentioned that she had arranged for a Infectious Disease doctor in the morning and also told me that I may want to consider plastic surgery, a suggestion I wish I had taken at that time. I was released from the hospital the following day and set up with home health care.
The Infectious Disease doctor examined me and prescribed me two antibiotics to take over a period of three months. Whether theses helped my case or not, I'm not sure. It's possible I could have been worse off if I hadn't taken them, but I wasn't getting better. I went on living my life just waiting for my abscesses to open and draining them myself - or going to the emergency room if I thought it was getting too large with no signs that it was going to resolve on its own. Going to the ER always meant that I was going to be set up with home health care, or what they call CCAC (Community Care Access Centre). Nurses could either come to your home to change your dressings and check on the progress of your wound, or, as they preferred, you could go into a near-by clinic every day or every other day for the same service. This may be common knowledge, but there are great nurses, and there are terrible nurses. I could write a book about my bad experiences with CCAC, but I won't elaborate. The point is, more often than not, CCAC nurses made my life more difficult than pleasant.
My sister had told me about a dermatologist that would see patients without a referral. This sounded great to me because having to explain to doctor after doctor (or anyone, for that matter) about your disease and the things you've already tried to manage it is exhausting. I called and made myself an appointment for a few months later. When I met with Dr. A, I felt like he sympathized me and I had hope. He knew my disease. He had patients with my disease. He had touched my wounds and wiped away pus. He sampled the pus for testing. These are things the first dermatologist I had seen never did. He had a son who worked in clinical trials and had just finished a study on my disease with an expensive treatment called Humira. He called his son right there in the patient room to ask him if he knew of any upcoming studies so that I could possibly get medication for free, but unfortunately the answer was no. He had also treated patients with HS with Accutane, but this too was expensive. With the knowledge that I didn't have any drug coverage, Dr. A prescribed me two strong antibiotics to take over a course of three months. Those antibiotics did help some. When I revisited Dr. A after the three months had passed, he prescribed me another run of the antibiotics.
HS controls my life in every way. There's not a moment I'm not thinking about it. There's not a minute I am not uncomfortable or not in pain. There is not a decision I make without considering my disease. I have to think about my HS before doing the smallest tasks. There are times I put off going to the bathroom just because getting up, changing positions, can cause so much pain and discomfort, and I'm literally mentally preparing myself for what I'm about to experience. Needless to say, there are many activities I just cannot participate in. Simply getting into the car can be difficult. I dread going shopping - too much walking, which means wounds rubbing against my clothes. I'm often caught off guard when someone asks me why I'm walking funny, or holding my arm awkwardly, because I think I'm hiding it so well. HS also controls what I can wear. As much as I love form-fitting clothes, its just not comfortable to be in them. I don't wear anything white - my wounds will stain it. I don't wear anything sleeveless - my underarms are full of wounds I don't want anyone to see, not to mention the drainage that will have no place to hide. I try to wear my clothing as loosely as possible, but I'm fighting to keep my pride, despite this disease and I hate to look shabby. Depression is all over my face. I try to act happy as best I can, to not bring any attention to myself. I look back at old pictures, and miss how happy I was and how beautiful it was to not be in pain; to just feel nothing. I cry all the time. The tears often start because of the physical pain - but they quickly grow into a bawl just thinking about everything I've already been through, how much the disease controls my life, and how I don't have any idea how to make this better. HS affects my sleep, because it's not easy to fall asleep while you're in pain or you're too busy scratching or squeezing a nuisance of a wound. It's frustrating just knowing that I can't just tell someone, 'I have HS' and have them just know what it is and have a small idea what I'm going through - as I could have if I had something like arthritis or psoriasis. No one knows what this is. No one has heard of it. No one can ever understand - and so I don't try to explain it. I've tried before, and it only leads to individuals thinking they know how to take care of it. I've been told just to scrub it, just to take the pain and squeeze it out and it'll go away and never come back. I've been told to just use natural soaps; that my skin just can't handle the harsh chemicals. I've even been told that it's because I don't pray hard enough. Everybody thinks know, but nobody really knows. It hurts to know that people don't believe me when I say this is an actual disease! It cannot be healed by something as simple as washing it away. If it were that easy, I would have rid myself of this a long time ago, believe me. Would you tell a cancer patient to just wash it off? I didn't think so. My loved ones, who know my condition still don't know what I truly live with because I try so hard to be normal, act like it doesn't bother me, around them. Firstly, because I don't want their ideas on how to 'easily fix' the problem, and secondly, because I don't want to be pitied. I just want to be free.
After two three-month courses of antibiotics, I was over it. I was over putting these pills into my body just to get little to no results. I stopped seeing Dr. A and went back to just dealing with it - drug free. This meant frequent visits to the emergency room and urgent care centres, and of course just waiting for some to burst on their own. I remember crying to a doctor at an urgent care, telling her how tired I was and asking her to I&D an abscess under my armpit. She told me there was no way to cure this and I was just going to have to live with it. How rude! I mean, so far I haven't found what she said to be untrue, but she could have been a little more comforting and optimistic. Can you believe she didn't even cut the abscess? She told me to take some antibiotics and wait for it to break open on its own. With this disease, I've learned that you're going to have to kiss many frogs to find your prince - kisses being doctor appointments, frogs being doctors, and the prince being a doctor who doesn't necessarily have all the answers, but just cares enough to try, and then try again. That night, I was in so much pain and a doctor refused to help me. Physically and mentally, I was fed up. I actually quit my job that next morning and applied for Employment Insurance. Getting up and ready in the morning was too hard and my supervisor was beginning to give me a hard time for the times I showed up a few minutes late after giving too much attention to a wound in the morning. I was physically and emotionally tired, and I truly just needed a break. So I quit.
I must have had enough of 'just dealing with it on my own' again, because I decided to go see a doctor one more time. I went to see a family doctor, who prescribed me some antibiotics but also referred me to a lovely dermatologist, Dr. Nisha Mistry. Oh, Dr. Mistry, what can I say about you? On my first visit, she presented me with print-outs and spoke to me on what HS is, what the different causes might be and different treatments. Now, I had already read most of this online while doing my own research, but it truly meant a lot to me that she had taken the time out to read up on my disease prior to my visit. After I told her I had already tried antibiotics - maybe too many times, she told me about Humira.
Humira defined by www.drugs.com:
"Humira (adalimumab) reduces the effects of a substance in the body that can cause inflammation. Humira is used to treat rheumatoid arthritis, juvenile idiopathic arthritis, psoriatic arthritis, ankylosing spondylitis, plaque psoriasis, and and a chronic skin condition called hidradenitis suppurativa."
Don't you just love how HS is the only disease they had to briefly define? She explained that she would only recommend this in extremely severe cases, because of the possible side effects. She had me change into a gown, and after taking a look at my wounds, she agreed I had a severe case. Unfortunately, like Dr. A had told me over a year prior, Humira is very expensive, and I didn't not have any drug coverage. She too, like Dr. A, knew of some clinical trials in which I could get the drug for free, but the trials had just ended before my meeting with her. That's when she told me about a program called compassionate care - where the Canadian government actually pays for your medicine because your doctor feels so terribly for you. That's my definition of compassionate care, anyway. She didn't make me any promises at that time, but told me she would put in an application for me. I was approved! There were a few tests and things I needed to do before I could officially start, but I eventually began my Humira treatment a few months later. I also started working again around the start of my Humira treatment, about four months after I had quit my last job.
I have to believe Humira helped me. It did not cure me, but I feel like my case got better. It's hard to say for sure because every time I would meet with Dr. Mistry for a check up, she would say it didn't look any better. But I felt better. My range of motion improved and I feel I was able to do more things a little more comfortably. I was still making visits to the emergency room, however. After one particular visit where I ended up staying the night, the hospital notified Dr. Mistry. She called me in a panic about a week later demanding that I come and see her right away. The hospital had totally exaggerated my symptoms. Apparently I had a fever when I was admitted, but they told her I came in shivering! They even told her I had been there for 3 days when it had really just been one night. I explained to her that it wasn't as serious as they made it seem, but she was still very concerned. She suggested I stop taking Humira immediately. At that time, I begged her to let me continue, but she pointed out that after eight months of treatment, I was not seeing sufficient results, and with the side effects of Humira, it may have been causing more harm than good. I agreed to stop, and after discussing with her some of the symptoms I was experiencing, she referred me to a gastroenterologist to check for Chron's disease, an internal medicine specialist, to just check me in general, and a general surgeon to actually operate on the HS manifestations.
Dr. Mistry had suggested I see the gastroenterologist for of some of the symptoms I was experiencing. I had a consult with the gastroenterologist to explain my medical history and my recent symptoms. At that time, he said if it was Chron's, the Humira should have helped with that - but he proceeded to schedule me for a colonoscopy anyway. I was cleared for Chron's - which I was happy about - but that doctor never really addressed the reasons I may have been experiencing the symptoms Dr. Mistry was worried about. Sigh. Doctors. Dr. Mistry had wanted me to see an internal medicine doctor because I was experiencing many fevers and she just wanted to make sure my body chemistry was alright. Somehow that appointment never happened. I was, however, scheduled to meet with general surgeon Dr. K for a consultation, rather quickly, I might add. She was lovely. Before examining me, she explained that she was only a general surgeon, and if my case would require something called a 'flap', then she would have to refer me to a plastic surgeon. A quick glance at my skin would confirm that I, of course, was more of a plastic surgery candidate. My heart sank. Luckily, she knew of an excellent plastic surgeon, she said, and would be able to get me an appointment with him a lot sooner than it would typically take. She was very sympathetic and encouraging and I really wished she could be my surgeon. At that time, I had recently been to the hospital for an I&D and was visiting the CCAC nurses every night. Getting the wound packed was very painful because the incision had been made so small. Dr. K was nice enough to widen it for me. As her nurse was dressing the wound, she assured me that the plastic surgeon I was being referred to was very good, told me I was very brave and that she was impressed with how high my spirits were. If only she knew I was fighting back the tears that would burst out of me as soon as I entered my car.
It felt like forever before I got a chance to see the plastic surgeon, Dr. T. If Dr. K had in fact expedited my appointment, I feel really sorry for those who don't have that privilege. My parents came with me to this appointment. After I had told them about what happened at my appointment with Dr. K, my dad told me to let him know of any future appointments. It means a lot to me that he didn't want me going alone. I'm guessing Dr. T had just finished reading a Wikipedia page or something on HS when he walked into my room because he was basically telling me all the things I would have read had I quickly did a google search on the disease. He basically told me at that time that surgery was not a good idea because of complications and scarring. This was before he even looked at my skin. After examining me, he tells me that he would prefer I go and see Dr. S, an expert in HS, and he would only perform the surgery if Dr. S recommended it. He told me that he would put in the referral, but not to worry because his office scheduled appointments quickly. In the mean time, he told me to focus on losing weight because HS was often made worse by heaviness. I am not a skinny girl, but I am not huge either. Weight may be a factor in other peoples HS, but not mine. I know this because I had actually lost quite a bit due to stress (of the disease) and my symptoms did not change. I didn't take it personally though. I knew he was just spewing out whatever he had just read on the internet. I was devastated, still. I had really high hopes about him because Dr. K and her nurse had praised him so much. I had even warned a supervisor at work that I may have to take time off shorty in order to recover from surgery. So of course, my heart was crushed. Another appointment that had caused me to go home and cry.
At this point, I'm waiting for an appointment from Dr. S, but not really, because for one, I had already seen a GREAT dermatologist in Dr. Mistry, and she had already recommended surgery, and two, I no longer trusted Dr. T. It didn't seem like he was eager to help me, and so I didn't want him to. I went back to 'just dealing with it', until I got a call from Dr. Mistry's office asking me to come in to talk about renewing my Humira prescription. I thought this was odd, seeing that I had stopped taking Humira, and Dr. Mistry knew of this. I went in to see her, anyway. I told her about my experiences with Dr. Kapala and Dr. T. She told me that she actually worked for Dr. Sibbald (who still hadn't called me for an appointment, by the way), on his team in his office on Fridays, and she knew for sure he would recommend surgery. This made me even more upset at Dr. T. She offered to refer me to another surgeon. I explained to her how frustrated and exhausted I was at all the appointments and disappointments - and that I needed a break from it. She understood completely, and let me know I could call her whenever I was ready to try again.
I got another odd call from Dr. Mistry's office a couple months later telling me that Dr. Mistry wanted me to call her to discuss my test results. It was odd because I hadn't taken any tests. I called anyway. She explained that she had been in contact with a Humira spokesperson who had asked her about my Humira experience. After she had told him that I didn't really benefit from it, he told her of a plastic surgeon who would love to help, as a 'special favor'. She said she knows I had opted to take a break from surgery consultations, but she didn't want to let the opportunity pass without offering it to me. I accepted. I wanted to at least talk to this surgeon. I was still in pain, and maybe this was my luck finally turning around.
I met with Dr. CT on Monday, November 21st, 2016. She asked about my Humira experience and about the surgeons I had seen before her. After I told her that Dr. T had basically told me he didn't want to do it, she told me that nobody wants to do it. She explained it was an extremely messy surgery that would require a skin graft and two separate surgery weeks apart, and after all of that, my body may reject it. When briefly describing what surgery on my lower body would be like, she mentioned that I would have to urinate in a bag temporarily. As you can imagine, this is where the tears starting filling my eyes. As she was working really hard to turn me off this surgery, I'm sitting there wondering why I was even invited to this appointment. I was told that there was a surgeon who wanted to help me as a special favor and when I met her, I felt like I was just being kicked in the gut. I told Dr. Mistry I needed a break from the heartbreak of surgeons telling me they can't help me, and she sent me to a surgeon that would reject me again. The surgery did sound awful, I have to admit. Her goal was clearly to make me change my mind about desperately wanting the surgery, and she did so well that I even forgave Dr. T for rejecting me. After seeing the tears run down my face and the disappointment in my eyes, Dr. CT offered to refer me to a plastic surgeon at St. Mikes Hospital who had done more complicated HS surgeries. I declined. I was so over it. Instead of surgery, Dr. CT suggested that I should go back on Humira. She stressed that it is a very new drug and it will get better and work. Whatever. I was on Humira for eight months and it barely helped me. I'm convinced I was just injecting cancer into myself and not seeing any immediate benefits with my HS. I refuse to go back on Humira. Something has got to give.
Dr. CT called me herself the next evening at 7:00PM to tell me she had spoken to the Humira representative, and he was doing to be in touch with Dr. Mistry in recommending some other dermatologists that have a little more experience with HS. She also said that she would contact Dr. Melinda Musgrave, the plastics surgeon at St. Mikes, and ask about any new approaches she has come across and can suggest. She explained St. Mikes is trying to develop a clinic of some sort where they can talk to HS patients about lifestyle changes, such as diet, that may minimize the effects of HS. She stressed that even though she didn't think surgery was a solution to HS, she didn't want me to believe that there was no hope, and that there were hopefully a couple things we could try before taking that route. The call meant everything for me. It lifted my spirits. It just felt like there was another doctor out there, in addition to Dr. Mistry, who was in my corner - who saw my pain and truly wanted to help.
I had reached out to a naturopath, Dr. S. The appointment was booked for a few days after I got the call from Dr. Mistry about Dr. CT, and I almost cancelled it thinking that I wouldn't need him anymore because Dr. Mistry found me someone that would help, but I didn't. During my first appointment with him, I just spent the hour telling him about my disease and how it affected me daily. He asked questions, I would answer them. He ended the appointment by telling me that he "really, really, really wanted to help" me, and gave me a few of his ideas. He prescribed me Effer C, a supplement to help me go to the bathroom more often and Vitamin D, and we booked an appointment for about 3 weeks later. By the next appointment, he had a very detailed plan written up that predicted to have me pretty much healed in six months. The plan included a couple supplements, something called colonics, and a strict diet of no dairy, sugar, gluten or wheat. As you can imagine, sticking to that diet proved to be difficult, but I did try. I saw little to no results, but to be fair - I was not completely committed. I went to a few subsequent appointments, but naturooathy is not covered by OHIP, and although my work insurance covered a lot of the cost, it was becoming expensive to keep seeing him, and during the appointments, he was mostly just making other suggestions of changes I could make to my diet. I felt like I could handle that on my own.
What's it like to feel nothing? I miss feeling nothing. No discomfort, no pain, no sting. I used to take feeling nothing for granted, and now I know how precious it is. I miss being able to sit down on a chair, a bed, the floor, without feeling anything. I miss being able to get into a car without feeling anything. I miss being able to drive without feeling anything. I miss walking and feeling nothing. Oh, I miss going up and down stairs without feeling anything! I miss putting on my panties, my pants, my bra, my shirt, my coat, without feeling anything. What's it like to get in and out of bed without feeling anything? To take a shower and feel nothing?
After that meeting in November 2016 with Dr. CT, I hadn't really been to any doctors, with the exception of the few additional visits with the naturopath. I gained a little relief by changing my diet - but no major improvements. In April 2018, the drainage coming from my arms was uncontrollable. My shirts were soaking wet within a few minutes of changing into them. I didn't know what else to do except to plea with a surgeon to operate on me. I chose Dr. CT. I met with her on June 6th 2018. Again, she illustrated a nasty surgery that might not even be successful. I told her I didn't care, I needed to do something. She offered to send me down to St. Michael's Hopsital to see plastic surgeon Dr. Melinda Musgrave or her colleague Dr. Karen Cross, who do a lot more work with HS. I agreed to a referral, just because I could tell how badly she did not want to operate on me. If you'll recall, she had mentioned referring me to these doctors before, but nothing ever came of it.
This time, I got a surgery consultation with plastics surgeon Dr. Karen Cross, scheduled originally for November 2018, but moved up to September 2018. It was simply and honestly the best consult I've ever had. She specializes in HS surgeries and really can't imagine why I hadn't been referred to her before. She told me I was an excellent candidate for surgery, but she agreed that my disease was so active that it probably wouldn't be effective. She requested that I see a dermatologist of her choice, follow their suggested treatment for about three months, and after the disease had calmed down, she would operate. I loved speaking with her because she just got it. She knew exactly how I was feeling as a person living with HS without me having to tell her. She knew and answered all my questions before I even had a chance to ask. It was obvious she had spent real time with other HS patients because she truly just got it. She was so hopeful and encouraging. She let me know that it would be a long journey to recovery, but that we would be on that journey together - and that I should always let her know where my head is at and how I'm truly feeling not only physically, but emotionally. I had never met a surgeon like her and even if I don't end up getting a surgery, I'm so glad that my path lead me to her - just to know doctors like her exist.
Dr. Cross referred me to dermatologist Dr. Afsaneh Alavi, also specializing in HS. She enrolled me into a clinical research study for a potential new "antibody therapy". Without going into much detail, I was required to go into a clinic every two weeks for intravenous infusion and complete a small questionnaire on a phone-like device nightly. I officially began getting dosed in October of 2018. A lot like my experience with Humira, I couldn't see any changes in the way the disease physically presented itself, but I can say the day to day pain dropped considerably and my quality of life increased. However, in mid-December, I developed a large abscess on my upper thigh. It had been growing in size and pain for about a week before my next scheduled infusion and meeting with Dr. Alavi. After examining the abscess, she decided immediately to take me off the study and arranged for me to have it drained that morning. She prescribed Ertapenem, an antibiotic infused intravenously daily, for four weeks.
Ertapenem is an antibiotic administered intravenously. I was taught how to run the IV on my own at home. It took about 30-45 minutes and then I would wrap up the IV site with gauze until I was ready to do it again the next day. While showering, I used a arm cast protector I found in a home health care store. It's basically a long plastic glove-bag that spans the entire arm, the way a cast would, and tightly seals before the shoulder. I couldn't use that arm to clean myself with, but the IV site was protected from the water. My IV site would have to be changed every 3-5 days. I would go to a CCAC clinic to have a nurse set up a basic IV line in my arm or hand. I have very difficult veins, and so nurses often had a hard time starting my IV. On every visit, I was poked multiple times before one was successful. There was a night when the nurses were not able to find a good vein, and I was sent to the emergency room for one of the nurses there to try. I waited four hours that night just to get an IV started. Initially, the plan was for me to have a procedure done to get a 'picc line', which is more secure than the regular IV and could remain in my arm for weeks without having to be moved, but that wasn't scheduled until week three of my four week course of the drug and it just didn't make sense at that point. All this to say, the treatment of Ertapenem caused some minor inconveniences, but overall I was pleased with the results.
Ertapenem was the best treatment I've received so far. I felt virtually no pain during the 4 weeks I was on the medication. My wounds pretty much dried up. Although you could still see them, there was no drainage coming from any of my wounds. My clothes remained dry throughout the day and through the night and I never worried about staining my seat. Proving this, my laundry loads we significantly smaller and my jeans/pants were clean enough to re-wear before washing.
CLINICAL TRIAL DRUG: IFX-1
Although an effective treatment for me, I could not remain on Ertapenem for very long. Antibiotics are not meant to be taken long-term. I was on the drug for about five weeks. With permission from the sponsors and executives of the clinical trial, Dr. Alavi allowed me to continue treatment with the clinical drug, IFX-1. During the first phase of the trial, I was either being given the active drug, or a placebo. Dr. Alavi wanted to give me a chance to enter the second phase of the trial, which guaranteed active drug administration.
Since beginning the second phase, I can confidently say I feel better. I have not experienced any large new abscesses, and the ones I already had are smaller and draining less. The most improved symptom is my ability to move; my range of motion. I am able to move my arms and legs in ways I wasn't able to do before. This alone has improved my mood and my quality of life. Dr. Alavi agrees, I will still need surgery to remove the skin that the HS has completely destroyed over the years, but if this drug makes it to the market, I believe it could help many of us keep the disease under control.
December 30th, 2019
Dr. Cross performed a 'left axilla extraction with flap' surgery on October 31st, 2019. She removed all of the affected skin from my armpit and pulled skin from my back to replace the missing skin. It was a day surgery that took about 3 hours. The wound was cared for by near by clinic nurses. It took a little over a month to fully close. The surgery went extremely well and I am please with the results. I will meet with Dr. Cross again in a few months to talk about my right arm. Dr. Alavi thinks I should return to Humira in the mean time, but at this point, I don't think I want to take that route. I know it's only been a couple months, but I believe surgery is the solution for me.
November 22nd, 2020
Dr. Cross performed the same surgery, this time on my right axilla on August 20th, 2020. Again, the surgery went well and I am pleased with the results. Now, I don’t have any inflammation or affected skin in my armpits and it’s truly changed my life. I can wear sleeveless tops and I don’t have to worry about drainage messing up tops with sleeves. I can finally wear white if I choose to. I do still have some HS on my lower body, but nothing that warrants the surgeries I needed for my arms. I will try to treat what’s left with diet changes - specifically the keto diet and will keep you updated.
The rest is still unwritten...
