Hello, I am a 17 year old junior in high school who has recently been diagnosed with rheumatoid arthritis. My pediatric rheumatologist and parents have been battling insurance and finally got Humira approved so I am supposed to start on the med in about a week. However, after researching a bit, I am scared out of my mind as to how I am supposed to cope with the common side effects of this drug and still be a functioning, high-achieving, high school student. I have big dreams of being an orthodontist in the future and want to be successful in life. I work hard, have straight A’s and good SAT scores and I am so scared that this means it will take me longer to graduate, and will hinder me from life as a normal teen. I am having a hard enough time already with just trying to finish this semester because the arthritis makes me so fatigued and hinders me from spending much time on my computer to write essays because my fingers are crippling. Not to mention, my main activity outside of school is piano and I am no longer able to do that either. I am just so scared. So if anyone has some advice/experience with being on humira in high school and into college I would love to hear your story and tips. Thank you all. 
I can’t tell you about Humira because it wasn’t around when I was in college, but I was diagnosed with RA at age 19 and probably had it for about 2 years before that.
I question why the doctors want to start you on biologics. Can’t they start with the older (less expensive), tried options of things like naproxen, gold and methotrexate? I have had RA for 40 years and have not had to go on biologics yet. I was told at age 19 that I would be in a wheelchair by 25. It didn’t happen. I made it through college, though it did take an extra year because I was in so much pain and had so much fatigue before I was diagnosed that I couldn’t go to college. I graduated in 4 years instead of my planned three. I still made it through law school and have had a career as a trial attorney for over 30 years. I have 5 children. I flare every 5 years or so at this point for about 6 months.
I suggest that you get a voice to text program, apply for accommodations that can be used when you are flaring (such as being able to dictate your tests or use a voice to text program, with extra time). I have no suggestions about piano specifically, but I have noticed that using your joints helps. When my hands were really bad, I had splints made for use when I was sleeping and I had PT, some of which involved using paraffin (a wax that melts in warm water) to squeeze and release. One of those tension balls that are squishy can help, too. Simply doing hand exercises can help retain mobility.
When I flare, I avoid tomatoes and other nightshade family products. I hate mushrooms, so that one is easy, but tomato stuff is tough. It does help, though. You should consult a nutritionist for advice. I found that very helpful.
Good luck to you. I know that this seems like a death sentence - it did to me when I was diagnosed. It isn’t - there is so much that can be done now.
Wow thank you for your story! That is so, so, so awesome (what an achievement!) that you made it through school and to an amazing career for that long. Yes, I wondered that too about the biologic question. My dr. said the “since it had already moved from one joint to at least 10 in just over a month, we needed to not mess around and just start out with the drug I think will work best for you.” Thank you for all of the advice about school and nutrition, I will definitely look into that. I appreciate your detailed response and good luck to you too.
I’m a PhD student with RA and lupus. I’m on orencia which is extremely similar to humira.
I wasn’t diagnosed until I was 25 but I’ve had symptoms for years.
I’ll type out more later but are you doing self injections or infusions? I’ve done both. Do the infections if you have the option. Infusions are such a time consuming PITA.
Dragon voice to text will be your best friend in college.
I was prescribed the self injections.
I completely understand your fears and anxiety about living with RA. I’m very sorry that you are going through this. My eldest was diagnosed with RA first then UC when he was a HS sophomore. It was a shock to all us and took some time to process and to figure out how to manage everything related to the diseases. He is also on Humira and has been on it for about 2 years. Like you, he excelled in HS academics, sports, and involved in ECs. He took the news fairly calmly and decided not to let the diseases prevent him from achieving his goals and living his life. He continued to perform at his very best in everything and was accepted to many colleges and is attending a college now with full merit tuition scholarship. His first semester was stellar!
First, Humira will help; however, it took a few months before the affects kicked in with my son. He was on Enbril for RA initially which worked much quicker, but due to the UC diagnose, he had to switch to Humira. I’m not going to sugar coat it, the Humira self-injection is going to sting more than you think, but it’s easy and quick. My son heavily ice his injection site to numb the area. He has done it himself from the beginning.
Second, developing a relationship with your rheumatologist and your pediatrician or internist and their nurses will be helpful. Nurses are godsend! My son communicates directly with his docs when things just come up and when it’s hard to know especially in the early years how to handle them. Getting a virus, cold, the flu really affects my son harder and his autoimmune symptoms flare up, sometimes his joints or sometimes his UC issues. Also he’s definitely more susceptible to viruses and colds bc his immune system is suppressed due to Humira. Learn to know how your body feels so you know when things aren’t just right. When my son’s joints hurt more than usual, he knows a cold is imminent. When his flare up last longer than usual he contacts his docs immediately and get things checked out. Sometimes presidone is required when flare ups occur so the system can calm down when your immune system is confused and fighting everything.
Third, like @techmom99, avoiding certain food may be helpful and developing a healthy diet. I tried to provide healthy and whole meals to my family, especially to my eldest son. He has learned to avoid too much gluten when he can bc he noticed correlation with too much gluten and UC flare up. It doesn’t mean he doesn’t sneak in pizza here and there, but he tries. Controlling his diet was much easier when he lived at home; it’s much harder at college bc food choices aren’t too great and he sometimes just want to eat what easily available. I’m hoping he’ll have a healthier diet when he doesn’t have be on a meal plan.
Fourth, don’t be surprised if your moods change over time. I indicated earlier that my son was calm initially. He did have a down period about 10 months after the initial diagnose bc he was angry that he felt like he could’t have a carefree life of a teenager like his friends and peers. Luckily we had many talks together about how he felt and he talked to his docs about it too. They were all very supportive and helped him through his feelings. He’s living enjoying his life and does not believe in living in a bubble.
Fifth, read about living with RA, but don’t do so much research that it’s terrifying. Talk with your parents and medical team. They will support you.
First, talk/have your parents talk to your Guidance Counselor about you going on this drug. That way they know some issues may occur in the future. Figure out are common side effects and what accomodations there may be.
So like you said, if there is an issue typing, can you get a dictation program.
If you have to write during a test, is there a way for you to do that? Have someone write for you? use a computer ina different room?
Once you go through this in Hs, you will figure out what you need in college.
As you may need more support from your family, consider how far away from home you will go.
Ok I’m back.
A few things:
-Do NOT look up side effects. if things start to come up after you start taking the medicine, let your doctor know. I have had virtually zero side effects from the orencia. I have friends on Humira, remicade, and embrel- very few side effects for any of us. The worst I can think of off the top of my head is some feel a burning sensation when they inject.
-Are they putting you on prednisone? If so, it is critical that you watch your diet and exercise. I put on 100 lb when they put me on prednisone (though my doc said he’s never seen anything like that).
-Swimming is a great support for people with joint problems.
For school:
-Do you have fatigue? For me, that was the killer, even more than the pain. I was sleeping 20 hours a day before I got a correct dx.
-Get your GC and teachers on board. There is a good chance you will have to explain to them what JRA actually is. Too many people hear “arthritis” and think of the thing that their grandma has in her hands.
-Dragon dictation. Just trust me. It’s worth the money. It is absolutely worth the money.
I promise, it will be OK and it will get better. I’m not going to lie, it took me a few years and I’m still not where I want to be. But I’ve finally gotten to a point where I can balance teaching, research, etc just like non-sick students (though I still require a little extra time for things).
It has only been a few years since I was diagnosed so I’m happy to answer any questions you might have.
My DS has chronic disorder that can cause arthritis like symptoms – first semester at a competitive college he became fatigued and lost use of his hands for writing and typing. Like you, he plays piano, which he had to curtail.
It was very upsetting, but he was able to get by with his laptop’s and phone’s text-to-speak programs, and managed to make high honors/Dean’s list. Now he can occasionally play piano, but he has to take slow.
The most important components to being successful were having accommodations and a positive attitude. Accommodations include extra time on tests, extra time on assignments with a lot of writing, use of dictation software for exams. You should also look into accommodations in college for a single room and use of a kitchen – diet is extremely important to keep up health, and a single room is better for getting the sleep you will need. Finally you may want to look into supplemental vitamins.
I would counter those people who say don’t look up side effects. You should most definitely know the side effects of the meds you are taking, so that you can stop using a medicine at the initial symptoms. For example, prednisone can cause severe psychiatric symptoms. It is good to know that is a possibility. One medicine I took caused muscle constriction (dystonia) – it presented as very severe – I couldn’t talk, walk or dial a phone. If I had realized that I was experiencing a side effect when I took the first pill – initial symptoms were subtle – it would have saved me an ambulance trip and a few scary days in pain. So do read the warning labels, but just realize that side effects to any particular medicine are quite rare.
Lots of people get through college with chronic disabilities. You can do it as well. Just don’t be afraid to rely on your parents and friends when you need them. Best of luck.
Ask your doctor about side effects. Don’t look them up on websites.
Side effects of biologics on their sites include things like cancer. You’re not going to get cancer. Ask your doctor what things people actually get.
You are fortunate to live in a time when there are laptops and things like Dragon. In the ancient days when I was in school, I had to take notes no matter how much my hands hurt. Take advantage of the resources available to you. Like @romanigypsyeyes, my major symptom was sheer exhaustion.
I still really think that you should discuss with your parents and carefully research if you can be managed on non-biologics. I know what you said your doctor said and I understand it, but the old medications can still work well and be effective. I don’t think I could ever give myself an injection…
@techmom99 for what it’s worth, I didn’t either. It’s been super easy. I was amazed. There are pens so you never even see the needle if you want/need them 
This really cannot be stressed enough. Take advantage of EVERYTHING even if you don’t think you need it. You will likely at one point.
@cag60093 Congrats to your son and I am so thankful to hear a success story! They are hard to find when buried by all of the awful things on the internet. Thank you for the icing recommendation…I will do that.
That is interesting that you said that about your son having a flare when he was getting a cold, because that very thing just happened to me and I thought I was crazy. Day after Christmas my joints started aching very badly and I could hardly pull myself up out of bed bc I was just so exhausted….next day I ended up with a cold but was so run down that it felt like the flu. How does your son avoid getting sick all the time though? Because I am at school, where everyone is sick all the time, I usually get sick with a cold 4-5 times per school year WITHOUT being on humira.
I am currently trying a dairy free and processed food free diet so we’ll see how that goes.
@romanigypsyeyes Yes haha about the researching….I am currently regretting reading the awful reviews of humira! However, I am very glad that you and the people you know haven’t had any severe side effects from it. Gives me hope!
Haven’t heard anything from my dr. about prednisone yet, so I don’t think so. But I do empathize with you about the weight gain because I was on prednisone (to reduce the size of a tumor) from birth till I was 2, and boy was I a chubyyyyy baby (to say the least lol).
As for fatigue…OH YES! For the longest time I thought I was just a run down teenager who was trying too hard to get perfect grades in school and sleeping too little. Then I realized that I really was just totally unable to get things done the way my friends were. Every day I get home from school, the first thing I do is nap. The scary part for me is realizing that I am hardly getting by in high school as is, and I just don’t know how I will be able to function normally at a rigorous college. Looking forward to functioning as a normal teen again, but I read (i know, shame on me) that Humira makes you even MORE fatigued??!?!?! Have you had that issue?
Thank you for the pep talk too btw
@psycholing Yay I am so glad to hear a positive outcome of a studious student with arthritis!
Thank you for your recommendation about the single room with a kitchen in college. Very good thought and I am glad you said that.
@techmom99 I will definitely look into Dragon. Sounds helpful for sure.
Haha I am not planning on giving myself an injection bc I too don’t think I could do it. Thank God for my parents and soon to be friends in college lol! But yes, I have an appointment with my dr. on Wednesday to discuss all of my and my parents concerns before starting humira so I will definitely ask that question of whether we have an alternative for humira.
Thank you all for your detailed responses and recommendations. I appreciate it and it is giving me some hope and motivation!
The reason your joints hurt more just prior to catching a cold and during is bc your body is already amping up to fight the virus. Unfortunately, that also means your immune systems also is attacking your healthy joint along with the virus bc it can’t distinguish just the bad. Fatigue is also a sign that your body is really tired of fighting and that you need to rest and sleep.
I’m not going to lie that my son was cold free his first semester. He caught a cold every 3rd week; he is just more susceptible to viruses bc of his suppressed immune system. His roommate never got sick this past semester. By his fourth cold, he was so sick of being sick and a bit angry about it, but it pushed him to make changes - be vigilant about washing hands regularly, use the bacterial wipes to wipe down surfaces and doorknobs, getting rest and sleeping, take vitamins and probiotics, etc. I told him these things throughout the semester when we spoke on the phone; I could just see his eye rolling at me nagging again, but by the 4th cold, I know he took it more seriously bc he was just tired of being sick. He was started using the humidifier and air purifier more regularly. He also finally made an appointment with an internist in town instead of going to the health center. I’ll explain more about this later.
I agree with @romanigypsyeyes about not researching online and talking to your doctors. There has been so many advances in treating RA; Humira is one of the reasons. Basically, Humira tells your immune system to stay calm and don’t attack everything. A friend of ours’ HS son has a really rare autoimmune disease where he is the 152nd kid in the world that has it (he’s the most case). His specialist did not start him on Humira, for over 2 years he was on a different meds, but he is on it now bc new research found that Humira works on that disease too. Self-injection is not hard and you never see the needle. Did you sign up for the Humira savings card? If not, “call 1.800.4HUMIRA (1.800.448.6472). You will also be assigned an Insurance Specialist or an Ambassador who will explain your HUMIRA coverage and tell you how to get a HUMIRA Complete Savings Card, which may help you get HUMIRA for as little as $5 a month,* every month.” Do you parents have good health insurance? It’ll help a lot. If so, I recommend staying on it when you go to college. Some students get university health insurance when they are in school. We didn’t want any disruption for medical coverage, so he’ll continue to stay on it as long as he can. Our insurance covers him while he’s at school even though it’s out of state.
As other posters suggested, you and your parents should ask for a 504 accommodations at your HS. Your GC is the point person who will get the ball rolling. The process is not quick, at least at our HS. You and your docs will have to document everything - the disease and what accommodations you will need. It’s also helpful to talk to your teachers one on one while that process is happening. Let them know on days your hands hurt too much and you can’t take notes, etc. Sometimes they can provide that for you. There is no shame in having RA.
@techmom99 's experience with prednisone is really unfortunate. I’m very sorry that you went through the ordeal. For my son. it’s a wonder drug when his body is really out of whack and he has never put on any weight. It is not prescribed often, maybe once a year, only when necessary. Also, it’s only prescribed for 5 days only at a fairly low dosage. Right before finals, he got really sick so his internist at his college locale, prescribed it. My son called me after taking it for one day that he felt great and that he forgot what it feels to feel good.
More later.
Did your dr put you on anything while waiting for the Humira? Have you been completely unmedicated during your initial flare/diagnosis? If so, I feel for you. You didn’t need to be left suffering without any treatment in the interim.
I have 2 kids who have serious autoimmune disorders (Lupus/Sjogren’s/RA). They were both put on prednisone immediately, plus methotrexate and plaquenil bc the RA was the immediate diagnosis while they waited for testing for Lupus (for lack of a better descriptor. This process took months.) Only when those drugs didn’t seem to reduce symptoms or diagnoses were morphing were biologics discussed.
FWIW, when you go to college, get your rheumatologist to write the disabilities office for accommodations. You should be approved for extra time for testing, laptop use, excused late arrivals to class, transportation between classes, etc. You might not need the accommodations at any given time, but they are good to have in place in case a flare occurs during the semester.