As those of you who follow the Facebook page know I started Otezla about a month ago. I'm not planning on this blog being about that so much as what to expect when we start a new immune suppression therapy whether it be DMARD or Biological.
We all have that dream of the magic medicine whether it be pill, shot or infusion, but the reality of advanced immuno medications is that they take time. There really is no secret formula for how or when it will start working. Not just between patients on the same medicine, but each individual patient will have a different time line and complications (and there will likely be a complication or two).
So what should we/I/you expect or watch for when we start a new medication. We all get the list of terrors when we get the prescription that can strike fear in the most fearless person, We hear the horror stories, which are generally the minority not the majority, but none the less they are generally the loudest voices. Those that are happily going on with their life with positive results and minimal or liveable side effects aren't yelling from the rooftops about their experience after the initial euphoria of significant improvement or remission settles in. It's very easy to step away from the misery that you know is lurking in your body to enjoy the fruits of a working therapy and YOU SHOULD! My point being that don't let the "War and Peace" length booklet on POTENTIAL side effects get into your head too much. Yes you need to be aware of what to watch for, but the majority of those side effects are a very small percentage of the population. And I say this as someone who has a very cantankerous immune system that comes up with side effects not even listed in the documentation. I am also one of the people who has tried nearly every pharmaceutical that has been approved by the FDA and am usually salivating at the news of a new release because I'm back to having failed everything before the newest and greatest next thing is released. I will still tempt the immune system gods, try it and pray for the best.
I guess the easiest way to approach this is to go through several common questions I hear on various support groups, from fellow patients, and friends who are newer in the process than I am. I will apologize because the only commonality is there is very little commonality to almost every question. That being said there are some ways to hopefully not get too discouraged or anxious while going through the process.
When will it start working?
The answer to this is there is no answer (I warned you). Whether it is Methotrexate, Enbrel, Remicade, Otezla, Arava or any others in any combination the unfortunate answer is there is no stead fast formula on when you will see results. My experience is that most specialists will want you on any one med for 4-5 MONTHS before declaring it a failure if you are having no response or continuing to decline. Now in that time they may decide to supplement with another medication, increase dose or frequency to try and increase efficiency, but as long as you are not having adverse reactions you're likely on it for the long haul. Now I know this is frustrating, but there is a method to the madness. We are dealing with a major body system. Some of us have been fighting this actively for decades and often for many many years it was lurking not diagnosed or unnoticed as well. These medications are suppressing production of parts of our immune system, but it can take time for a) that suppression to take place and b) the proteins that we have stored in our system to dissipate. It may also take some time to find the right dosage or combo that works best with your individual chemistry. My personal observation and experience has been that if a medication is going to have some impact you will usually start seeing or feeling some minor changes in the first 4-6 weeks. It might not be ground shaking, yell from the rooftops improvements, but you will likely be noticing some changes by then. It can be exciting and frustrating all in the same breath. I happen to be an itchy as well as an achy so for me I normally start noticing changes in my psoriasis first. It may not be significant to anyone else, but I notice it. I blogged about my Humira experience a few years ago and it was around week 2 or 3 I think that I noticed while on my porch having my morning coffee that the rather bad patch of Psoriasis on my big toe had a beautiful pink completely clear of scales spot right in the middle. If I could have danced a jig I would have. It was some glimmer of hope even if it was a minute one by most people's standards. With Otezla in the last 10 days or so(I'm about a month in) I have noticed that my Psoriasis isn't quite as thick as it has been and I'm getting that new skin pink on the edges and under some of the larger scales. I also have NO cracking which is HUGE for me especially since we are on the tail end of winter here (No peanut gallery comments about "winter" in Phoenix). In both cases it is not a guarantee that the medication is going to be enough, but it sure is a sign of life and enough to keep me going without losing complete hope. Other meds have not been so lucky to have that. On Simponi I went the full 5 months with not only no improvement, but I also developed Pustular Psoriasis so in my opinion it made me worse at least in the skin department. So the answer to the question is there really is no answer. There is what seems to be a point where the specialists accept defeat, and there are often small victories along the way before major change is seen, but there is no cookie cutter answer for when it will start working or how that process will take place.
What side effects can I expect?
Wait for it.... It's a surprise! Yes there are some side effects that seem to be fairly common like with Methotrexate many people experience a level of nausea and some hair loss, but then there are many people who don't. As I said above there is the novel of horrors you receive with each new medication. The majority of these listed side effects are there for legal reasons because there was a small percentage of trial participants who experienced it or if the medication has been around a while a small percentage of patients have developed that side effect. This protects them from being listed in those class action law suit commercials from the ambulance chasers, or at least limits it. If you spend the time and fight the desire to pass out from boredom you can find actual percentages on most side effects. It is often listed in the hand out, but if it's not it is on line in most cases without too much deep research. The reality is if you found 100 people who were the same age with the same disease characteristics and asked them what side effects they experienced with any one medicine you are going to get 100 answers. Yes there is likely to be some overlap, but rarely will you find 2 people who have identical side effects or results let alone time line for either. The other quirky thing is that side effects can be sneaky. Some you may realize quite quickly. On Otezla, Methotrexate, Remicade, and Sulfasalazine I had nausea almost immediately. On Remicade and Sulfasalazine it eventually went away, and after some time I didn't even get it when I got my dose. So far with Otezla it's a near constant with it being much worse in the mornings (no I'm not pregnant). On Methotrexate it improved for the first few years and then suddenly returned with a vengeance. On Humira I had no impactful side effects for the first month or so.At around month two I had full body hives including inside my mouth and it felt like I was gargling glass shards. Cimzia I swelled up like a water ballon and gained almost 20 lbs in the first 2 weeks which was all fluid on my joints. At the month or so mark I had a site reaction and within 24 hours of my shot I had full body hives. So the presence, lack of, or even increase/decrease of any individual side effect is not a guarantee of anything. What it boils down to is be aware of your body. If something is off make a note of it. You are the only one who can decide if it is worth the price for the improvement you are experiencing or the potential for improvement. This is often when self advocating is important. Telling your dr you can't keep your breakfast down often is interpreted as "I have some mild nausea, but lets keep going". If morning nausea and vomiting is where you draw the line stand firm. You may be living with this side effect for a long time. If it is something you can tolerate for a while to see if it improves or the trade off of the positive is worth it than keep an eye on it and keep on keeping on. One example for me of an acceptable side effect was on Remicade I could pretty much guarantee that 24-48 hours after my infusion I would be exhausted. I would drive home from the doctor's office, stop somewhere for a large milkshake because that was about all I could tolerate, get home and crawl into the bed and get in the fetal position where I would stay except to crawl to the bathroom to pee. I was beyond miserable. That being said once that passed I had 4-6 weeks of feeling pretty close to normal. In my opinion giving up 1 day for 28-40 days of nearly normal life was an acceptable sacrifice. I scheduled my infusions for Thursday or Friday so I missed as little work as possible, made sure I had prepared meals for my family so I didn't need to worry about cooking, and my family knew that I was going to be useless for that time. They also knew that after that passed they had their old mom back at least until the next infusion.
Will I get sick more while on Immune Suppressing therapies?
Another solid answer of maybe. Yes these medications are meant to target certain parts of the immune system, and yes it may make you more susceptible to germs/illness, but then again it may not. Also keep in mind that similar targeting medicines may not have the same effect on your immune response to illness. An example is Enbrel, Humira, Remicade, Simponi, and Cimzia are all TNF-Alpha inhibitor targeting medications. On Enbrel I got pneumonia 3 times in 6 months. On Remicade I would get a sinus infection with allergy season, but I probably would have anyway. It was just pretty much a given the 5 years I was on it that it was going to be a zpack every 6 months or so. On Simponi I had no increase in illness. The others I wasn't on long enough to really say. Now knowing MY experience I can tell you I know people who run the gammit on any medication you want to ask about. Some find they catch every illness in a 1000 mile radius of them, Others could lick the side walk outside a port a potty and be fine(though I wouldn't recommend it). It is another one of those things you need to be aware of what is going on with your body and keep communication open with your specialist. If you are finding a particular medication is too much for your immune system do not discount another medication in the same class for that reason. Yes they target the same components, but if they were all the same we wouldn't have the options we do. Each medication has different components and ingredients to do that job so each one will have a different impact on your immune system. You do need to be practicing extra precautions while on any immune suppression therapy. Avoid sickies as much as possible. Be extra consistent with hand washing especially when being in public places and during illness cycles in your individual community. Let people you are close with know you are immune compromised and that as much as you enjoy their company if they are sick they need to not expose you to it if at all possible. Do not take live vaccines. Flu shots are not a live vaccine, but the nasal inhaler one is. So just be sure to ask before hand to be sure you are not putting yourself at risk. If in doubt call your specialist for confirmation before taking any vaccines. If you have children in the house teach them good hand washing and habits that minimize the spread of germs such as coughing into their elbow, proper food handling practices, and sneezing into a kleenex. Really all common sense things everyone should practice, but being immune suppressed you need to be extra aware of these things for yourself and those around you.
These are probably the most common questions I see and hear from fellow Psoriatics preparing to start a new immune therapy. The answer to all of them is there really is no answer. That being said you are the expert on your body. You need to be aware of what your body is telling you, self advocate if things are not going well, and be realistic in what to expect when doing your own cost/benefit analysis. Fear the disease not the medication. Though it may be a long road to finding your magic medication or combo no treatment is the only guarantee you have that you will not get better. You may never be what you once were, but improving your quality of life and keeping it longer is the goal. Hopefully some day there will be a cure. In the meantime the best we can do is do try for improvement and maybe remission through medication, lifestyle modification and self care. It may be frustrating and terrifying but you are not alone. Every single one of us who have taken a DMARD or biological has felt exactly how you feel at one time or another or we do now.