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I felt the same way. After years of not knowing why my body was attacking itself, it was nice to finally be able to put a name to all the strange symptoms I'd been having.#livethebestlifepossible #LTBLP #chronicillness #chronicdisease #chronicpain #diagnosis #Behcets #BehcetsDisease #BehcetsSyndrome
Hey y'all, it looks like I may be getting diagnosed with Behcet's Disease along side my other autoimmune disorders. Does anyone have any experience with this disease? I'm in the middle of a flare up and it's been... very unpleasant.
Silently Suffering
Mom and dad are fighting and we’re stuck in the middle. As chronic pain warriors, we rely on a collaborative effort between healthcare providers, including pharmacists and physicians. In 2019, patients suffering from pain are falling through the cracks of the system. Chronic pain patients are pushed aside, herded from one physician to the next, scrutinized, judged, and shamed. Doctors are bullied by insurance companies and government guidelines are being misinterpreted. Fear mongering is forcing our doctors to surrender their right to prescribe narcotics and turning chronic pain patients away.
I’ve been waiting for over two months to have a nerve block done for severe sciatica. My neurosurgeon has recommended a diagnostic procedure called a functional anesthetic discogram. This procedure will enable my doctors to isolate exactly which disc is causing me pain. It’s possible that it’s not just my discs causing me pain, but also the cyst that showed up in my recent lumbar MRI. In order to have the procedure done, I need to be in pain so that I can tell the doctors if the anesthetic they inject into each level reduces my pain at all. As a result, I can’t get my nerve block until I have the discogram done. My pain management doctor prescribed me a low dose of pain meds last month to help me with my pain while I wait for the nerve block. I filled my prescription last month at my neighborhood Rite Aid (where I’ve gone for the past 3 years). Over a month later, I needed a refill because I was still waiting for the nerve block to be done (don’t get me started on insurance bureaucracy). My doctor called in the refill last Wednesday and I called my pharmacy to make sure they received the order. I spoke to someone who told me to call back when the manager was in because there was “some kind of note” on file. I called back around 2:30pm and asked to speak to the manager. A woman got on the phone and I asked if the refill had been received and she said, “Yea, I don’t feel comfortable filling that for you.” I hesitated for a second in disbelief and replied, “Okay, is there a reason why you can’t fill my prescription?” The woman repeated that she just wasn’t comfortable filling my prescription. I was in shock. I asked why again and she then told me that it seems I’ve been to many different doctors and that she just does not want to fill my prescription. I responded by saying, “Yes, I’ve been hospitalized about 6 times in the past year and when I’m discharged, there are different hospitalists on call and so I can see why it would appear that I’ve seen many different doctors. However, all of my doctors are a part of Cedars-Sinai hospital and they all work on the same team and discuss my case with each other. I only use this Rite Aid to fill my prescriptions and I only go to Cedars-Sinai for my medical treatment.” The woman on the phone then said, “Actually, you filled your medication at a CVS once and also you’ve filled prescriptions at Cedars-Sinai hospital.” I replied, “Yes, I forgot that one time I was discharged very late at night and needed to fill my medication at the CVS by the hospital because they were open 24/7. Regarding filling my prescriptions at Cedars-Sinai – yes, I fill my medications at the hospital when I’m discharged because that’s where the doctors send it and it’s easiest to have my medications with me before I am discharged home. I don’t really see that as strange behavior.” The woman on the phone said, “Well, I’m new here and I just don’t feel comfortable filling this prescription. You also are prescribed Klonopin and so I am not filling this medication for you.” I told her that I was prescribed a very low dose of Klonopin, and I have been for the past few years, never increasing my dosage and that I would not apologize for taking care of my mental health. I also said I didn’t know what to do because I’m waiting for a procedure to be done and was prescribed the same medication over a month ago (indicating that I took even less medication than prescribed) and my medications have not changed since the last time I filled this prescription. The pharmacist then repeated that she just does not feel comfortable filling the prescription. I was at a loss as to what to do or how to fill my prescription so I asked the pharmacist, “Since you’re new and you’re not familiar with my case or who I am, is there another pharmacist there that I could talk to?” The pharmacist said that there wasn’t. I then asked who had been filling my prescriptions over the past few years and she said she didn’t know, but that I could call back the next day to speak to a different pharmacist. I said okay and asked what her name was and she said, “I’m not telling you that.” Again, in shock, I said, “Well, I think I have a right to know who is denying my medication refill, just like you have a right to not fill my prescription.” The woman then said she felt like I was interrogating her and eventually said her name was Stephanie and hung up the phone. During this conversation, Stephanie lectured me on what medications I should and should not take, despite knowing nothing of my medical condition. She refused to call my doctor to collaborate with him and instead said, “Oh, I’ll call your doctor. I’ll call him to let him know I am not filling this prescription.” I asked Stephanie if she had ever been in pain before, to which she replied, “Nope.” *Eye roll*
I called my doctor’s office and explained the situation and sadly, they said they encounter this all the time. They transferred my prescription to CVS and it was filled 8 days later. It’s taken me a couple weeks to even write this blog because I’ve been in a lot of pain and not really in the mood to write. I called Rite Aid headquarters and spoke to the regional manager, who called me the very next day from the Rite Aid store and apologized profusely for the way in which I was treated. She said Stephanie wasn’t in that day, but that the techs and pharmacists who were in overheard the conversation yesterday and were appalled at the way Stephanie spoke to me. The pharmacists said they had no problem filling my medication (too bad I already transferred it to CVS and had to wait 8 days for it to be filled). I also filed a complaint with the California Board of Pharmacy, which the regional manager encouraged me to do. Below is my written complaint.
“Stephanie is new and is not familiar with me as a patient. As a result, she refused to fill my medication. I asked her to please speak to my doctor so she can familiarize herself with my case and she refused. She also refused to give me her name until I kept asking and she eventually told me it was Stephanie, but accused me of interrogating her because I was asking for her name. Stephanie treated me like a drug addict, refused to collaborate with my doctor (who works at a very reputable hospital) and refused to give me other options on how to fill my medication. She shamed me and spoke about other medications I was taking out loud and other pharmacy techs overheard (Marleny the tech overheard the conversation). I spoke to the regional manager for Rite Aid, whose name is Raluca. Raluca went to the pharmacy today when Stephanie wasn't there and apologized profusely for the way in which I was treated yesterday. Stephanie also advised me on what medications I should and should not take, which is actually illegal because that is giving medical advice and practicing medicine without a license. Pharmacists are supposed to protect the patient, which not only includes making sure we don't abuse medication, but also making sure we have access to medication that is ethical and prescribed to us by a licensed healthcare professional. Shaming a patient and refusing to contact/collaborate with the doctor and not informing me of my rights, as a patient, in my opinion is unethical. Furthermore, Article 10.5, section 733 (unprofessional conduct) states "a licentiate shall not obstruct a patient in obtaining a prescription drug or device that has been legally prescribed or ordered for that patient. A violation of this section constitutes unprofessional conduct by the licentiate and shall subject the licentiate to disciplinary or administrative action by his or her licensing agency." Based on the fact that this prescription was previously filled for me at the same pharmacy by a different pharmacist and I have always been a responsible patient (never requested an early refill, take even less than prescribed since the last time this medication was filled was over a month ago, never claimed to have "lost" my medication, etc.) in my opinion constitutes legitimate usage and Stephanie was practicing beyond the scope of her licensure. Denying medication based on illegitimate concerns is unethical. The regional manager, Raluca, will be speaking to her tomorrow, but encouraged me to file a complaint as well.”
Keep fighting, my chronic pain warriors!
Xoxo
EN News: February, 2017
What erythema nodosum research was published this month?
It has been a busy year so far in erythema nodosum research. January brought us some interesting insights into EN and IgA deficiency. In February, researchers saw EN in several studies about other illnesses, found a successful treatment for EN and idiopathic mastitis, and asked some interesting questions about granulomas.
These articles were all indexed by Google Scholar in the month of February and have publication dates in January, February, or March. Most of these articles are behind a paywall, but if you are interested in one of them, I can help you find somewhere to read it.
Studies:
Coexistence of idiopathic granulomatous mastitis and erythema nodosum: successful treatment with corticosteroids Eleven patients who had both erythema nodosum and idiopathic granulomatous mastitis (IGM) were treated with methylprednisolone. The erythema nodosum was completely gone from all of the patients within two weeks of starting the medicine. Within twelve weeks, the IGM symptoms were also gone from all of the patients. The researchers kept up with all of the patient for sixty months: neither condition came back.
HTLV-1 seroprevalance in sarcoidosis. A clinical and laboratory study in northeast of Iran 125 sarcoidosis patients in northeast Iran were tested for a virus that is known to dysregulate the immune system. 76 of those patients had erythema nodosum (63.2%). If I am reading their tables correctly, only two of those patients were positive for the virus. In the end, the study did not see the virus more in sarcoidosis patients than was normal for the area.
New insights on tuberculous aortitis Tuberculosis infections in the aorta are very rare. This study compared eleven patients with tuberculosis aoritis, three of whom had erythema nodosum.
The effect of vitamin D on clinical manifestations and activity of Behçet’s disease In this study, 68 patients with Behçet’s disease had their vitamin D levels tested. The authors wanted to know if treating Behçet’s patients with vitamin D would help with their symptoms. The vitamin D didn’t seem to help. Four of the 68 patients had erythema nodosum. Their vitamin D levels were lower than in Behçet’s patients without EN, but there were not enough patients to determine anything.
Association between rheumatic diseases and cancer: results from a clinical practice cohort study 1750 patient records from an Italian rheumatology clinic were analyzed for a connection between autoimmune diseases and cancer. Erythema nodosum was not studied on its own, but instead was part of a group called “isolated immunologic manifestations.” This group was not discussed much in the article; out of the 112 patients in the “IMM” group, only 3 got cancer within two years. The article does not mention specifically how many EN cases were included.
Evaluation of asymptomatic venous disease by Doppler ultrasonography in Behçet’s disease patients 22 patients with Behçet’s disease and 22 controls were tested for vein disease. Eleven (50%) of the BD patients had EN.
Individual Cases:
A granulomatous conundrum: Concurrent necrobiosis lipoidica, cutaneous sarcoidosis and erythema nodosum in a nondiabetic patient This very interesting case from Australia describes a woman with three different skin conditions on her shins at the same time: necrobiosis lipidica, cutaneous sarcoidosis, and EN. All three appeared at different times and responded differently to treatments, but the authors wonder if they were all related since all three were granulomatous. (Granulomas are collections of immune cells; they are basically your body’s way of trying to wall off foreign substances.) There is still a lot we don’t know about the way granulomatous disorders work, and as far as the authors (or I) can tell, this is the first time all three of these conditions have happened concurrently.
Pulmonary Sarcoidosis in Behçet's Disease Treated with Adalimumab In this case, a man had Behçet’s disease that wasn’t responding to treatment. His doctors put him on adalimumab, an anti-TNF agent which suppresses the immune system, and he quickly got better. Six months later, he went back to the doctor because of night fevers, muscle pain, and joint swelling. A few days later his chest started to hurt, and he had erythema nodosum on both legs, among other symptoms. He tested positive for the Legionella pneumophila bacteria, and he was diagnosed with Legionnaire’s disease. But, after treatment for the Legionnaire’s, they discovered that he also had sarcoidosis of the lungs. Both Legionnaire’s and the sarcoidosis are potential side effects of anti-TNF drugs, and they both are associated with erythema nodosum, although sarcoidosis is much more common.
Image challenge: Painful leg lesions in a young woman This “pop quiz” style case study has a photo of an unusual presentation of hormone-related EN. The spots are around both of the patient’s knees and a large, dark red patch is around her left ankle. The skin appears to be splitting around the ankle as well, although it’s hard to tell from the photo.
Fever and arthralgia after ‘volcano boarding’ in Nicaragua A man and a woman both contracted histoplasmosis after a trip to Nicaragua; the woman developed erythema nodosum. The authors of the article blame “volcano boarding,” despite not finding the fungus that causes histoplasmosis in a sand sample.
Adverse reactions to fluoroquinolones in the Nigerian population: an audit of reports submitted to the National Pharmacovigilance Centre from 2004 to 2016 A Nigerian patient taking Levofloxacin developed erythema nodosum, likely as a drug reaction. This reminded me of a case from 2012 when a kidney transplant patient was treated for pneumonia.
A randomized, double-blind trial of abatacept (CTLA4-ig) for the treatment of takayasu's arteritis One patient in this double-blind trial of a drug for takayasu’s arteritis had erythema nodosum during a relapse of their disease. Takayasu’s arteritis is a rare disease that damages the arteries around the heart.
Books and Review Articles:
Dermatopathology 101: Part 1 – Inflammatory skin diseases Three German doctors published an article about diagnosing different inflammatory skin diseases under a microscope and included a section about erythema nodosum. The biopsy slides they included are clear, straightforward examples of the microscopic features of EN.
Misdiagnoses and Mimics:
A clinicoepidemiologicalstudy of cutaneous tuberculosis in a tertiary care teaching hospital in Andhra Pradesh, India In this article, a case of erythema induratum was originally diagnosed as erythema nodosum.
I am interested in reading this article, but I don’t have access to it:
Lee, Jonathan J. (02/01/2017). "Cutaneous Reactions to Targeted Therapy". The American journal of dermatopathology (0193-1091), 39 (2), p. 67.
This post was an experiment. Would you like to see monthly research round-ups on this blog? Let me know!
Functional Anesthetic Discogram ✔️
I hate this picture. I'm puffy and tired from my flare-up. My surgical scars on my neck are showing. Yet, I still want to post this because it's so important to show people all sides of yourself. If I only post my "best self" on social media, I'll constantly be trying to live up to something that is unattainable.
People have often asked me (with good intentions), "Are you better yet?" and are surprised when I say no. Chronic illness is chronic; there is no cure. That doesn't mean I will be sick forever, but as of now, there is no cure for my disease and limited treatments available. There are treatments for my symptoms though, which is why I got this diagnostic procedure done.
I want to say I was brave and smiling, but when you know you're about to have needles stuck into your discs in your spine, no matter how many surgeries you've had, it's hard to be calm. On top of that, of course, I could only find patient experiences for provocative discograms online, which weren't very encouraging. Thankfully, I had great doctors and nurses, and they helped me feel really comfortable. Since my procedure was one that most residents don't get to see very often, I had a LOT of people in the procedure room. The first level they injected did not help with my pain (which is a good thing because now we know not to do anything surgically to that level). The second level did help with a lot of my pain, which is helpful information for my neurosurgeon. I'm still having a flare, so now it's just rest, rest and more rest!
Sick vs. Sick
I've been inspired by other #chronicillness warriors lately. I've held onto this side-by-side for about 2 weeks, too embarrassed to post it. Reconnecting with my inner advocate and shouting to the world that not all illnesses are visible. Pictured on the left is me during a flare (105ºF fever, swollen lymph nodes, rash, severe pain) and right is me ALSO during a flare in Lisbon (my right eye was seeing double and I had a fever of 101ºF).
Be kind to others because everyone is fighting their own battle or supporting someone else's battle. Sending love and pain free vibes to everyone all around the world. 💞
About two months ago I started dating my boyfriend, who has never been close to anyone with a serious health issue. Everyone in his family is fairly healthy and he hardly goes to the doctor’s because he doesn’t need to.
Since we’ve been dating, I’ve had several doctor’s appointments and medication changes and been in moderate amounts of pain while hardly sleeping more than 4 hours a night, no matter how hard I try and how tired I am. Yesterday was a bit worse of a day than I have been having due to lack of sleep, on-and-off low grade fevers, and generalized muscle and joint pain. We work together and I had texted him something about how I thought I had a fever and wished I could just take a nap and sleep it off (oh the irony - as if I could sleep).
His response to me was that I should take the rest of the day off and relax in his apartment (which is across the street from our university/work). I told him I felt weird being in his apartment by myself (plus his roommate could come home whenever and see me there just chillin - even though we’re friends it’s still weird) and he said he would take the day with me, if it means I’ll relax and maybe get some rest.
I was shocked at his response. I told him I’d be fine to make it to the end of the day since we weren’t doing much and that I’d rather be here to continue to make money even if it means I’m uncomfortable. Plus I don’t want him to not make money just to sit with me because I’m not feeling well. He told me “it’s just money.” I ended up talking him (and my sister who happens to be my boss) down enough that I could stay the rest of the day at work.
This boy. He was going to willingly leave work for half the day to sit with me in his apartment so I could get some rest. Not understanding that this is nothing compared to what I went through just a few months ago.
When I first told him I wasn’t feeling well, he told me that I should have just stayed home like he told me to on Sunday. Eventually, I explained to him that since I’m always in pain, I like to try to go to the things I need to and understand that I can always leave early if it’s too much. And since I’m constantly in pain, it’s hard to pick and choose what days I would stay home and what days I would go out, as most times there’s hardly and difference in the pain level when I wake up.
He was in shock at how much thought I had put into this. My response was simply that this is my life, and I don’t have a choice but to put this much thought into it.
We’re both excited for a future together (I know, it’s only been two months, but we spend so much time together), but I feel like it’s going to be a while before he fully understands what it means to be dating someone with a chronic illness.
Health Deterioration Part 10000
I’ve been having troubles with my stomach since the year started. In January/February I stayed home a lot due to excessive nausea and the fact that my stomach felt like it was eating itself.
I found temporary relief with a medication that’s supposed to help with acid reflux but eventually that stopped too. So onwards to another specialist I went. This doctor also had no real idea what Behcet’s Disease was, but seems to be willing to work harder in order to help me. She listened to all of my concerns and ordered a test that she didn’t think would be very useful just because I was concerned about something.
She thought it would be good idea to get an endoscopy done so that we could actually look at my GI tract and take biopsies to make sure there wasn’t anything catastrophically wrong. I was glad she was ordering the test, but not happy about actually having to get it done. In order to actually do an endoscopy, they have to put you to sleep through IV anesthesia. The past two times I had an IV put in, it was terribly painful and took several sticks. Needless to say, I was very worried and anxious about it. It did end up being painful, but not as bad as the previous time when I was in the hospital. I was even able to get my heart rate from 150 down to 117 during it.
Let me tell you, that anesthesia was amazing. I was worried about waking up in excruciating pain because I wouldn’t have enough time to compartmentalize my pain like I normally do, but it was the best sleep I’ve had in a VERY long time. I remember asking my mom if they could give us that in pill form. Unfortunately, nothing as nice as that can last forever.
For over a week after the endoscopy, I had ridiculous chest pain that was made worse by breathing and swallowing. 4-5 days after the endoscopy, I called my doctor and asked if it was normal, considering they dilated by esophagus since I’ve been have trouble swallowing. After playing phone tag for an entire morning, they told me they had no answers and that it was someone else’s problem.
With a new medication, things seemed to be getting better, until they weren’t. I started eating less and less due to extreme nausea and stomach pain. I was just going to deal with it until my follow up but it started interrupting my already little amount of sleep. So back to the doctor I went. She changed my medication and ordered yet ANOTHER test to be done the first week of July.
One aspect of this that I am wrestling is the fact that due to all of these stomach problems, I’ve lost 10 pounds. Prior to this I was trying to lost weight, but stopped trying hard when the stomach problems worsened, instead saying I was going to eat what I could in order to continue functioning. But now I’m starting to wrestle with how exactly I’m losing this weight. Since February, I’ve lost over 20 pounds, but I just don’t feel like I have. I’m still seeing myself as 20 pounds heavier even though so many of my clothes are way too big. I think I need to start working on changing my mindset on how I view my body, but I just don’t know where to start.
