In April 2020, I noticed that there was a patch of skin that was dry and scaly. I saw a dermatologist and he prescribed a steroid cream and I used it twice a day, added on Vaseline at night and it still didn’t go away. There were days where it would look better because it wasn’t as scaly or it wasn’t as red but it never really got better.
I saw the dermatologist again and this time he prescribed a much stronger steroid cream that I had to use twice a day (3 weeks on, 1 week off). That was exactly what I expected from the appointment. What I didn’t expect was a biopsy. Yes, suddenly I was lying on a bed, waiting for the tools to be brought in while my foot was being prepped. The worst part was the needle he had to insert into my foot to freeze it. There’s very little fat on your foot so let’s just say… I screamed. I would normally hold back but I just couldn’t. Then he did the biopsy and removed a sample and then he stitched me up. He stitched me up!!! I went there for cream and I ended up getting stitches…that I had to get removed 10 days later. When I left the office, I felt traumatized. The doctor did nothing wrong and he was kind but I’m the type of person that likes to mentally prepare myself for stuff. I’m actually not really great with sudden changes to plans. I’m getting better at it because having an autoimmune disease kind of forces me to but nothing really prepared me for that. The biopsy pointed to Psoriasiform dermatitis. What is that? What does that mean?
Psoriasiform dermatitis refers to a group of disorders which mimic psoriasis. My dermatologist told me that my Remicade is causing this patch of psoriasis. I couldn’t believe what he was saying. I’m thinking that I’m going to have to find a new biologic and he tells me that it’s more complicated than that. Any biologic will cause this response. I’m apparently lucky that it’s only on my foot. It could be on my head, my face, my body. I’m so sorry if any of you have it spreading all over. It’s painful and feels like it’s burning or ripping. The flakes don’t stop and there are days when it hurts to wear shoes.
I shared what my dermatologist said with my rheumatologist (always keep all of your docs in the loop). My rheumatologist is also very concerned about taking me off my Remicade. She prescribed a cream for me to add on to the steroid cream that my dermatologist prescribed. I’ve been using it for three days and I am seeing some improvement so I am hopeful. I had no idea that this could happen from my biologic. I have been on Remicade for many years now. Maybe it’s my body saying it has run its course. I always worried that the Remicade would stop working for me. Maybe this is the beginning of that. Only time will tell. I will keep you posted and if the cream works, I will share its name.
Here is a study from a medical journal in 2012 that sounds a lot like my case. It gets into the science behind it all if you find that sort of thing interesting. It’s not as uncommon as I thought.
This is one of the most passive aggressive things someone has ever said to me. It’s a question that always made me very uncomfortable especially since it’s formulated to be more of a statement question, you don’t look sick? So, is the person trying to say that I’m actually not sick because I don’t look it. In the beginning stages of my disease and even now when I’m having a good day, I often didn’t look on the outside how I felt on the inside. I was diagnosed at twenty, when you’re just starting to date seriously and plan for your future. An autoimmune disease happens when the body’s natural defense system can’t tell the difference between your own cells and foreign cells, causing the body to mistakenly attack normal cells. This type of overactivity can surely account for one of the major symptoms of an autoimmune disease, fatigue. “You don’t look sick” was something I heard a lot when I was young because many of the symptoms were things I could mask. Yes I was tired, but I could just drink a lot of tea (coffee would’ve been better but I can’t stomach the stuff). Yes my joints hurt, but at a young age my medication was really working for me so I could mask that too. But, there were times when I just couldn’t mask it internally. The symptoms would be sudden and severe and I would out of nowhere feel the need to sit down, leave, hide. “You don’t look sick” was something I tried to pride myself on. It was an invisible disease and I tried really hard to live a normal life and to talk about IT as little as possible. I was afraid to tell any potential boyfriend that I had a disease. Would he run? Why would he want to be with someone who is at risk of getting really sick? Who would want to be with me? All of those negative thoughts were for nothing. The person that ended up being important enough to confide in didn’t care one bit about my Ankylosing Spondylitis in the best way possible and we have been happily married for over 10 years now.
When my disease took a turn for the worse shortly after giving birth to my son, I had many “you don’t look sick” moments. One moment that really stands out to me was when I was a new mom. I was very sick, in a complete flare, bloodwork was a mess and I had to go to many of my appointments alone with baby because even though my husband wanted to be there, one of us had to work, and he worked hard to keep us afloat. I unfortunately had so many appointments because they didn’t know what was wrong with me. Life was hard. My son would start crying in his car seat and I would always start by trying to rock him with my foot. My ribs were on fire, my spine was stiff so picking him up and bouncing him around was a last resort for me. The looks of disdain I would get and the silent echo of “pick him up” that I would hear in my head was heart-breaking. No one understood that I felt like I was being stabbed in my spine because I didn’t look sick.
Crossing the street was another one of these moments. I walked rather slowly one day because my spine was stiff and my right hip was inflamed. Did the driver waiting honk at me and tell me to hurry up? He sure did. I didn’t look sick. In his mind, I was being a diva and just taking my time. People will judge you on the street, at work, in your social circle, anywhere and everywhere. It took me a long time to stop caring about what others think about me. It took me too long to take off the mask. As much as an autoimmune disease doesn’t define who I am, it still does play an important role in why and how I am. It’s important to share your story with others. It’s important to let others in on your bad days so that you’re not alone and they don’t just say or think “you don’t look sick?”
Here is a link to the PDF version of the Spoon Theory explained by the one who came up with the concept, Christine Miserandino. I’ve also attached the YouTube video. Give it a chance, it gets better as you listen. I cried my first time because I related to her so much. It’s a great way to explain to others how you feel on a daily basis and what you have to go through for them to say “you don’t look sick”.
I recently participated in a webinar held by the Canadian Spondylitis Association. They are a really useful and informative organization if you’re newly diagnosed or want to stay informed about your disease. There’s even a link so that you can connect with a group near you. I am on their mailing list so that I don’t miss out on the latest webinars. They offer great advice and give you the opportunity to ask questions to some of the top doctors in the world.
Dr. Nigil Haroon began the webinar by speaking about Covid-19, what it is and how it infects our cells. What I was interested in hearing about was how the vaccine affects those of us with autoimmune disorders and those that are on immunosuppressants. I also wanted to know where those of us who are immune compromised fall in terms of the long lineup for the Covid-19 vaccine. In my province of Ontario, there are 3 stages. One for long-term care residents, one for those who are most vulnerable and one for the general population.
The first thing I learned about getting the flu shot or vaccine is that it’s important that your disease is controlled. If you are feeling off or in the middle of a flare up, it’s probably best to avoid getting it. I have comorbidities (Ankylosing Spondylitis and Primary Sclerosing Cholangitis) and Dr. Haroon stated that both diseases should be well controlled prior to any shot. I also learned that getting the the vaccine is much like getting the flu shot if you are taking Methotrexate like I am. It is recommended that you stop the Methotrexate two weeks prior to receiving the vaccine and two weeks after receiving it. I got my flu shot this year and I followed this to a tee and had zero issues. Apparently, stopping the Methotrexate in this way can help make the flu shot and vaccine more effective. If you are on Remicade or another biologic, as of now, it is recommended that you get the vaccine in the middle of your cycle. I get an infusion of Remicade every 6 weeks so I would get my vaccine on week 3. So far the experts aren’t suggesting that you stop the biologic, but things may change as more information comes out. As more essential health care workers receive their vaccines, some will be in the same boat as we are, and therefore more data will come out. Immune compromised people are purposely kept out of vaccine trials due to how fragile we are so there really isn’t much data about how the vaccine reacts with immune compromised people. Both the Pfizer and Moderna vaccines aren’t live ones so we don’t have to be worried about that. They are mRNA vaccines. To trigger an immune response, many vaccines put a weakened or inactivated germ into our bodies. Not mRNA vaccines. Instead, they teach our cells how to make a protein that triggers an immune response inside our bodies. That immune response, which produces antibodies, is what protects us from getting infected if the real virus enters our bodies. I was worried about it being a live vaccine and it was confirmed that they are not.
Lastly, I found out that even though many of us who have spondyloarthritis have compromised immune systems, in my province of Ontario at least, we do not fall under any special category for receiving the vaccine. We will all be eligible in stage 3 with the general public. I was disappointed by this because I’ve been living a very sheltered life since March 2020 because I’ve been deemed very high risk by my rheumatologist. I’ve had several infections which I will talk about in another post and am therefore considered vulnerable to catching this one. Dr. Haroon eluded to the fact that this is the case because there is no proof that we actually are more susceptible to catching Covid-19 just because we are immune compromised. I guess that’s a good thing because the last thing I would want to hear is that there is a high percentage of people on Remicade who are testing positive. The problem is, I’m not comforted by that and as a mom, I worry about what could happen if I did contract the virus. The sooner I can roll up my sleeve, the better.
If you want to watch the webinar for yourself, here is the link: https://www.spondylitis.ca/spa-covid-19-vaccine/
Cannabis has helped me tremendously in managing my illnesses. There are different forms of cannabis that can be used in conjunction with one another so it’s a myth if you think that you have to smoke in order to consume cannabis . Cannabis has come a long way which is why it has earned its reputation as a medicine. There are edibles which is something that I honestly don’t use for managing my symptoms because I haven’t found the right way to cook with it and when consumed through food, there is a time period that needs to take place in order to digest it and feel the effects (60-180 minutes). Also, I’ve only consumed it through desserts and weight gain is a big no no for Ankylosing Spondylitis and Primary Sclerosing Cholangitis patients.
The most common form of consuming cannabis is by smoking it. You can roll it in a joint, use a vaporizer, a bong or a pipe. In my opinion, a vaporizer is the best way to consume cannabis . It eliminates the problem with smell, you don’t have to consume as much and it creates a purer smoke. With cannabis , you want to get the right strain for the purpose it’s being used for. Sativa is generally used during the day because it can provide energy and motivation to accomplish day to day tasks. The sativa strain that you choose is a personal preference. There are different flavors and different quality levels but the overall effects are all quite similar.
Indica is a strain that is used for pain, when needing to relax and for a better sleep. There are hybrid strains that have 50/50 sativa/indica which work to relax you but do not necessarily make you sleepy. Just like with sativa, the indica strain that you choose is a personal preference. Most indica provides you with similar overall effects. How much you smoke depends on your tolerance and your pain level. The higher the CBD content in the strain, the better it will work for pain. A low level of THC and high level of CBD will not give you the effect of being high which is a great option for anyone that strictly wants to use it for pain management or for someone that is new to it. Smoking cannabis is the method of consumption that is least recommended because of the side effects that it can have on your lungs so that’s definitely something to consider.
If you really don’t want to smoke it, and even if you do, oils are also very effective and can be used on their own or alongside smoking it. CBD oil is a very effective oil for pain and is often prescribed by doctor’s for all kinds of pain from arthritis to fibromyalgia to migraines. I’m currently taking a prescription with a proper dosing schedule and I’m already seeing some progress. I simply measure it with the dropper and I keep the CBD oil under my tongue for 30 seconds before swallowing it. It’s that easy and if it’s high CBD, low THC, you won’t get high. If you do want to calm your mind as well as your body, you can also find oils that are more balanced, 50% CBD and 50% THC or even a higher THC content. I will be talking about this journey in another post but I truly believe that anyone with arthritis should consider taking CBD oil for pain management.
Cannabis has been a lifesaver on my health journey and it’s one of the most versatile options for patients with arthritis. I will never understand why someone feels comfortable taking the pills they are prescribed while turning a blind eye to a more natural option that can be used as a support when your medication just isn’t enough. It has since become legal here in Canada but there is still an unfortunate stigma that surrounds cannabis even though its effectiveness has been proven time and time again. Please don’t allow the judgement of others or your own preconceived notions about cannabis stop you from exploring it as a viable pain management option. It may seem overwhelming at first, but I will walk you through purchasing on the OSC (Ontario Cannabis Store) website (for those of you in Ontario) in more detail in a future post.
I’m passionate about using cannabis as a pain management option and I want others to feel comfortable embracing it as an option for themselves too. It could be life changing. My AS can get so bad that anything is worth a try at this point. Cannabis can provide that boost of energy when fatigue is overwhelming. It can provide pain relief for those days when every body part is stiff and getting ready for the day seems like an insurmountable task. As I mentioned above, a regular dose of CBD oil can help manage symptoms and keep the pain more under control. Cannabis can help with sleep on those nights when nothing feels comfortable. Many of us who suffer with arthritis have minds that race with anxiety. The never ending cycle. What if it gets worse? I am feeling worse. What if I’m completely stiff when I wake up tomorrow? What if I can’t get ready for work? What if I’m nauseous from the methotrexate? All of these thoughts can make it difficult to sleep. Meditation and cannabis can have a positive impact on your sleep.
Cannabis offers an alternative to pills. I’m unfortunately at my limit in terms of how often I can get my infusion. I get it every 6 weeks and most people get it every 6-8 weeks. My rheumatologist offers me Celebrex to take when I have a flare up or start suffering weeks before my next infusion. I completely understand this and have used Celebrex and it has helped me but I have comorbidities. I have Primary Sclerosing Cholangitis. I have a liver disease. In order to protect my liver, cannabis is a great option. So for someone like me who already takes Remicade and Methotrexate, replacing a pill with cannabis makes complete sense and it was actually supported by one of the top rheumatologists in the field.
If you are new or even if you’re not new to cannabis, consult your doctor. Getting the proper dosage is so important and they can help guide you through it. Try a more targeted approach and use the right plant for the right symptoms. Also, cannabis use is not recommended for anyone under the age of 25 and it’s also not recommended for seniors. I hope that sharing my experiences might spark some of you to talk to a doctor, talk to someone you trust. There’s nothing to be ashamed of.
I will never forget my first infusion of Remicade. I was so nervous the day I found out I was going to have to start a treatment plan and I was very nervous the night before my first one. Not too much has changed since COVID but there are some key differences worth mentioning.
I have been to several different infusion clinics. From my experience, they are located in a medical building and are attached to a doctor’s office. The doctor is supposed to be present just in case there are any adverse reactions. Your infusions will be scheduled weeks apart. I get my Remicade infusion every 6 weeks. Some people go every 7 or 8. It just depends on the activity of the disease and what amount is required to keep it under control. If you are in a lot of pain a couple of weeks before your next infusion, tell your rheumatologist. Your medication should last until your next dose. Maybe you need to increase the frequency. There are limits though. Me being at 6 weeks means it is as often as I can go. So if I’m stiff before the next infusion, I have to deal with it or if it’s not tolerable, look for other options. My rheumatologist prescribes Celebrex for when I’m having a flare up or worse pain than usual. I often use cannabis when I’m having a flare up because I have a liver disease and prefer to limit my usage of pills if possible.
It’s best to arrive to the appointment hydrated. I make sure to drink water the night before and the morning of. That way the nurse can easily find your vein for when he/she hooks up the iv. I have small veins that like to run away so I will do anything to make the nurse’s job easier. Pre-Covid, I would’ve brought my tea with me and maybe even a snack but nowadays you have to wear a mask and can’t bring anything in to eat or drink. I recommend wearing loose clothing and a sleeve that is easily rolled up or a t-shirt so your arm is easily accessible. My go to clothing for an infusion are lululemon pants, a black shirt and my roots cabin long sweater that I sort of wrap over top of me and my iv. Otherwise you can also bring a blanket. For whatever reason, I find it cold during my infusions and a blanket can be very comforting, If it’s your first infusion, you will be there for over 3 hours as they have to observe you and they also set it to drip at a slower rate. Don’t worry, this will get better. I get my Remicade infusions in an hour and am in and out in 1h30. I also wear my moccasins or a pair of slides. You have to weigh yourself when you’re there and I like to remove as much weight as possible before stepping on that scale. Good for you if you just hop on that scale with your shoes on but I’m not that brave. You will sit in a recliner as well so you may just want to kick off your shoes and relax. You won’t be alone. There will be from 2-3 other people in the room with you receiving the same infusion or something else. I’m sure there are clinics that have more people than that but I’ve had at most 4 other people with me. Most clinics will ask you the following questions:
1) When did you last see your rheumatologist?
2) When will you see your rheumatologist next?
3) If you don’t do blood work with them, they will ask you when you last had blood work done. I get my regular bloodwork that is usually required from patients on Remicade at the time of my infusion. The iv is already in and why not take advantage. If your doctor can arrange this, do it! One less appointment to worry about.
Next, the nurse will prep your arm to hook up the iv. Don’t let him/her go into your hand unless he/she really can’t find a vein in your arm. It’s also a really good idea to alternate arms in between infusions. It shouldn’t take them multiple tries. Does it happen, yes, but it really shouldn’t. I’ve gone home before with my arm extremely bruised not realizing what the nurse had done because I tend to look away when the needle is being put in. Don’t be afraid to self advocate if you do end up bruised or you want someone else to try. It’s your body and you need to take control. Many of us are too afraid to say something and I’m here to tell you, say something. I’ve even requested a specific nurse for my infusions because she seems to just get my veins. Getting an infusion can be stressful enough. Do whatever you need to do to make yourself comfortable. Also, make sure when they clean your arm with alcohol, the next thing that should go in is the needle. Don’t let them touch your arm with their latex gloves again and find the vein. If they do that, kindly ask that they clean your arm again. Why am I telling you this? I ended up with a septic hip in 2018. They aren’t sure where I got sepsis from but the only place that made sense was my infusion. My infectious disease doctor told me to do exactly what I just told you. Can it be uncomfortable to tell someone how to do their job? Yes. Sepsis is uncomfortable too. Trust me.
Once the infusion is done, you may be able to leave (not on your first time) by signing a paper that states that you preferred not to stay for observation. Before Covid, some people would bring a loved one with them who would sit with them throughout the infusion. We are no longer allowed anyone with us. Maybe you’re wondering if you will need someone to drive you home? I personally drive myself but I have been on Remicade for years. I would have someone drive you to and from the appointment if it’s your first infusion because you don’t know how it will affect you. I start to feel tired a few hours after my appointment and I’m usually out of commission that evening and for the next day to 2 days. I feel very tired. My legs feel heavy. I may feel nauseous. When I was working full-time, I would take the next day off to recover. If you’re able to do that, I highly recommend it. You won’t want to cook so either plan ahead of the infusion, don’t be afraid to ask for help, or spoil yourself and order in.
Don’t worry. I know my post may be a lot to take in but your infusions will become routine. Everything will become predictable and you will develop a level of comfort with your treatment plan. The hardest thing for me during my health journey has always been the unknown. Hopefully you have some more insight into what your infusion may look like and you can take some comfort in that.
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