Welcome! I am so sorry to hear of your battles. I am new also, been dealing with this for more than a year. You will learn everyone's RA symotors are a little different so some meds work well for one person but not another. All of the meds for RA come with serious sideeffects. When I first started this journey I swore I would not take any of them, but as the pain got worse I was begging for the meds. Remember that your goal is to prevent permanent damage. If your Rheumatologist is not listening to you, move on to the next. It is imperative that you have a working relationship with this person. What I have found though is that the Rheumatologist are overworked so you need to be well prepared with questions.

I am the same way. I hate taking medications for anything. I typically will not take any unless I absolutely NEED to. So I was devastated to learn that this is something that will require medication for the rest of my life. Especially since as you said they all have very serious side effects. I am considering making an appointment with my regular doctor to see if she can change my referral. I used to work in a doctor's office so I understand how pressed for time they are. I always have all of my questions written down in a notebook and pen in hand to take notes on what they say. And he isn't the first rheumatologist I've seen as I was diagnosed with fibromyalgia when I was 18. Which is why my RA went so long without being noticed. He just doesn't take the time to communicate with me which is unfortunate. And I've heard some of his other patients have the same problem. It's a very small town and I'm not even sure if there is another one in the area but I will have to wait and find out. I am completely lost on other things to do besides taking the medication. But the only response I've gotten is to do some research and come back with any questions. And then the next appointment is the same response and so on. It's very frustrating and leaves me feeling alone. That's why I decided to join this group. I am slowly learning that this is something you don't really understand unless you go through it, much like fibromyalgia is.

Welcome to the group. Sorry you are having to deal with this diagnosis (even more confusing when on top of fibromyalgia) at such a young age.

Continue to keep your questions and concerns written down since we always forget our questions when we get to the doctor's office. And keep a diary of your symptoms - which joints hurt, how long you have joint stiffness, etc.
Understand that the medications can take a long time to work, and sometimes you have to try a few before you find the right mix for you. Steroids (prednisone) are usually pretty quick to make a difference, but it does depend on how high a dose you are given. And steroids just help the pain get better and do not treat the disease. All those other meds you will hear about are necessary to help control the inflammation and reduce the chance of permanent deformity and damage as well as other possible complications of RA outside the joints. A lot of people here can share stories of delayed treatment and the damage they have suffered because of that.
Stay as active as you can. Figure out who your support system is and hopefully help educate them so they will understand better what you are going through (it's not just joint pain).
And ask this group questions as you go along. There are a lot of helpful people in here.

Shout out from another younger person with autoimmune arthritis. I'm 24, and have been dealing with this for 10+ years. Don't have experience with leflunomide (Arava is the brand name, for those who may not be familiar), but can say that finding the right DMARD has greatly improved my life. Something I would share with anyone who is newly diagnosed is the RA Warrior website. The author posts a lot of recent research on RA, broken down in an understandable way. She is a patient herself, and does a lot of advocacy work. http://rawarrior.com/

Yes. It is difficult to discern what symptoms are from fibromyalgia and what is RA since they are similar in a lot of ways. My rheumatologist is hoping I was misdiagnosed but it's unlikely since I was tested for RA before being diagnosed with fibromyalgia. But we have to wait until we get my RA under better control and see how my symptoms are then. Keeping a journal is a great idea! It never even crossed my mind. And it will probably help a lot in determining whether or not I have both conditions or just one. I will have to start one. I have been trying to explain to those who are close to me what has been going on but it's difficult since I don't fully understand it myself yet.
I have looked at that website you mentioned and you're right it is great. There is a lot of good information on there. I keep reading little by little and I hope in time I can understand more about this disease. I'm finding it to be a very slow drawn out process but hopefully I can keep my spirits high. I'm grateful I found this site with lots of people who know EXACTLY what I'm dealing with. And it's comforting to know that I am not the only young person on here. Although I cannot imagine having to deal with this as a teenager. You truly are an inspiration. Thank you everyone for your support. Just knowing that I am not alone is uplifting.

I tried Arava, briefly, and had some unpleasant side effects, but stopped because it was a trial "compliment" to single med therapy (rituximab) and did nothing to help. But that was my situation. It could be fine for you, and trust me, there are far scarier sounding drugs. If you can, try not to have a predisposition toward these meds, but DO keep notes. Good luck.

The feeling of being overwhelmed is a perfectly natural part of this process that every one of us has been through. You are not alone. This is a life-change, whether your symptoms are mild or severe.

The meds are absolutely kind of scary, but no one person ever has all those side effects, and in fact many of us find a protocol that is without side effects at all. If you're like a lot of people here, maybe you haven't been taking meds regularly for anything at all until now. A pharmacist pointed out to me that all the meds she dispenses come with warnings and potential side effects; this isn't specific to RA.

And the thing is.....NOT taking the meds is actually more scary. So, like many things in life, it's a question of which choice sucks less. When you weigh the potential for side effects (and remember, you'll be monitored closely, with regular blood work) against permanent disfigurement and loss of abilities, then the decision is clear, at least.

It is unfortunately a slow process from the time you're diagnosed to the time you find the protocol that works for you, but it can be done.

Good luck to you, and keep everyone here posted on your progress!

hey want to let you know that you have a LOT of 20 somethings on this list - so that you can hear the voices of those in the same age trajectory, as yourself. some in college or grad school, some working, some new moms. welcome. glad you are here.

depotblue

My primary was very accommodating in referring me to a second Rheum when the first did not work out. I live in a very small town, first Rheum was 45 min away. I am now traveling 3 hrs for current Rheum and it is worth it.

I have took arava for a year now. At first I had minor side effects but within two weeks they were gone. I love it & don't even notice I take it anymore. Methotrexate gives me horrid side effects so I'm about to be on orencia with the arava. I'm also in my 20's & my advice is to stick up for yourself & demand answers. It's your body you're putting these meds in! If they won't answer ask the same question until they do lol! Autoimmune disease is scary & good days aren't frequent for me but when I have them I love them to the fullest. On bad days I snuggle up with my kids & watch movies etc.

Yes. I've already made an appointment with my PCP to talk to her about it. She is very understanding and always takes the time to really listen so I'm hopeful she will allow me to change rheumatologists. And everyone is right about the meds being the better option. I know all medication has side effects and I'm prepared for that but that's why I normally don't take anything unless I absolutely have to. Even my inhaler. I will always try to control my breathing first and use it as a last resort. I have always been that way. I was sad when my doctor told me I will probably have to take at least one medication everyday for the rest of my life. But like everyone has said RA is life changing in a lot of ways. It's something I will have to adjust to.

Does anyone have any advice on how to ease the pain/stiffness? I have found it to be almost unbearable the past few weeks and I know it could be a while before the medication starts to make an improvement and could be potentially longer if this one doesn't work either. I am immune to ibuprofen so that one is out and I reserve Tylenol for when I have a fever or an unbearable headache so I don't build an immunity to that as well. But are they any other things I can try? Non medicated ways perhaps?

Movement is important when you have pain so you don't lose mobility, but you have to be thoughtful about it. I've found that managing the fatigue helps with pain too. It's not the time to push yourself to work longer or harder - just think about maintaining the flexibility that you already have when you're in a pain cycle.

Everyone seems to be different when it comes to pain control. You'll have to do some experimenting. Heat may work, or cold. Massage can be helpful. Yoga is beneficial for me, but not just doing the poses - I mean the real thing, where you're really focusing on breathing, maximum mindfulness would be one way to put it, lots of thinking about releasing tension and pain.

I think your attitude is really good. You're not happy about this - who is? - but you realize that you have to adjust to it. RA certainly won't adjust to you. This is our new reality, and we have to figure out how to live with it, and that can seem overwhelming. But it can be done.

i had to add hours to the already dark o morning routine in order to get ungelled when working. i liked those hours - the kids were still asleep - ungell at your own pace if you can find the time. i have wraps from amazon that have these thin little ice packs that go in them (or heat) - i have them for ankles and wrists. i have memory foam round thing cushions that i stash and take places in the house, in the car, and I had them at work.

sometimes my rheumatologist would offer a pred bridge or one of the 17 nsaids that are out there that are prescription as a bridge to whichever dmard i was going onto.

do your own research and don't take a poll once you have made up your brilliant mind about which way you are going to go. this is your disease for another 60 years. you are the admin of your body :). the doctor, if I had to guess, is not ruminative (just guessing). Meaning she needs specific questions (like what does the dmard target? or which avenue does the biologic block?, or which nsaid would help me as a bridge until the dmard kicks in? or yadda yadda yadda as opposed to - for example, will I ever feel like I used to? - which is something i asked in the beginning and it got me a blank stare. Try bringing a mentor best friend with you to nothing more than listen and observe and maybe hold your index card with the three target questions that you have isolated - next visit - if you think this resonates as something helpful. I did this for my best friend who has RA and that's where I learned that my buddy does NOT listen to the rheumatologist. I should have taped her. hang in there.

welcome
glad you are here.

Welcome to the forum, but not to RA!

I have been on Arava for over 1 1/2 years, with Orencia and mthx. I have not had big issues with Arava, athough it did raise my liver enzymes. I take it 2 out of 3 days, and that seems to be fine. I decided after I got on mthx, that I would see what happened when I cut out Arava. 5 days later, I had a massive flare in my left shoulder, and I had so little energy, I could not get out of bed.

Fortunately, I got back on quickly, and things settled down. I would not be afraid of Arava. It may or may not affect you. It may or may not work. But you have to keep on trying, because for me at least, there is nothing worse than flares and no meds>

I do hope Arava will work for you, make sure you let us know how you are doing!

Hi
I am new here too,not sure if I have RA we ll see the lab result.I am sure you know those but I may suggest you to read about Gut flora which is very important for our immune system. we can improve it by eating homemade pickles ,yogurt and kefir,kimchi basically fermented foods,last week I did a lot for my family... all kind of auto immune diseases are very low rate In Asian countries. D3 (try to use it with MK7)defiency is also important for these type of diseases.Omega3 (krill oil and kelp supplement ) also very important. You can look into Chinese medicine ,there are many many wonders ..lots of herbs herbal teas.. turmeric and ginger reduces pain .
I hope everybody gets well asap..