Living with RA

Hi, my name is Penny. After 7 years of struggling with swollen knuckles and having to cut off my wedding band, I was finally diagnosed with RA (1 year ago this month). My previous doctors (I switched PCPs several times) would look at my fingers and say it was osteoarthritis. No tests were offered until late fall 2014. Then only a blood test, no hand x-rays. The test came back negative. I was too "busy" to research it further. To top it off, we have a family history of autoimmune disease. I still didn't make the connection, until the diagnosis punched me in the gut. Then I cried because I was angry that not one healthcare professional had made the effort to find out the true cause of the inflammation. So it goes.

After about a 1 year on Methotrexate and 5 months on Humira, I'm ok. The swelling in my fingers at least is not getting worse, and is slightly better. I'm not incapacitated by any means (my husband still has to open the jar lids, however). I can't grip the golf club as tight, which is not a bad thing. I work in the yard, which is under construction, so I'm digging dirt, building walls and etc (I do rest more often). I am taking a more serious look at my diet. Chocolate is my downfall!

My problem with the current RA doctor is the rush to get me to infusion therapy. He started me on Methotrexate and Prednisone, which helped. Then jumped right to Humira, and is now hell bent on infusion drugs. A little too aggressive in my opinion, so I've slowed it down. After suffering from two injection site reactions, I ready to take a step back. I am just not sure what that involves. Any suggestions?

BTW - RA doctors in Tucson are in severe shortage. It is not easy to change doctors. Your case has to be "accepted" by the doctor.

6 Replies

oldestnewest
  • Hi Penny,

    I hope today is better than yesterday for you. I was on Humira and Methotrexate which worked maybe "ok", and now I'm on Enbrel and Methotrexate and doing the best in years!!!! Amen to that. Just a thought if you haven't tried Enbrel. I'm not fond of infusions either. Keep looking up. Blessings, Brian

    PS. A little dark chocolate is supposed to be good for you :)

  • Interesting about Enbrel. Per the RA guy, they're all equal, which I figured was not quite true. Taking something every week vs every 2 weeks has its drawbacks, which is why I chose Humira (I had a choice). Any injection site reactions?

    Only dark chocolate!

  • Ha, not sure on the dark chocolate thing???

    I did have very small injection site reaction with the Enbrel which went away after the 3rd injection, never with the Humira. I'm told that the only difference between Enbrel and Humira is that the Humira is derived from humans and the Enbrel is derived from animals, other than that I'm told they are the same. I'm thinking the reason two weeks with the Humira for shots, is probably because after studies they determined the benefits weren't good enough warranting a shot every week per risk and that every two weeks was sufficient. Blessings once again!!!!

  • I am on methotrexate now 6 pills per week with folic and doing well. I watch my eating habits and formed a better diet so far so good. I went from 47 to 11 which is pretty good. My issues are in my knees and shoulders

  • Hi Penny,

    I'm in a similar situation in that I've been on MTX and Humira since diagnosis in Dec 2015 and feeling ok but my Rheumy wants me to switch to infusions of either Remicade or Rituximab and I'm not sure what I want to do. I've only been on meds for 6 months....

    My symptoms were dismissed several years as sports injuries by 4 doctors, two were specialist and one was actually a Rheumatologist. I was an elite endurance athlete competing in Ironman triathlons and then later in week long cycling stage races. I even mentioned RA to one of the doctors and he said there was no way I could have RA and be able to do long distance races for days on end...yeah, right. He didn't bother administering a blood test but reassured me that if I took a few weeks off training all would be fine.

    18 months later I woke up and couldn't make a fist, brush my hair or hold a cup of coffee.----

    I went to a new Rheumatologist and had lab work done. I was negative for RF but had a high positive anti CCP. MRI and X-rays showed early bone erosions. I was pretty angry that I spent the better part of three years seeing countless doctors and specialist and not one of them suspected or tested for RA.

    What I've come to learn is that this disease is insidious and comes in many forms. There are several subtypes and finding out which type you have is key to figuring out which treatment direction you wish to take. If you are told that you have a pretty aggressive form of the disease and have blood markers to indicate a poor prognosis then the doctors will strongly suggest treating it as aggressively and as quickly as possible. If you have a milder form of non erosive RA they may suggest a less aggressive treatment. I don't think any doctor would push strong treatment without a good reason. In fact, many people with RA can't get their hands on biologics due to cost. That's not to say that your RA can't be treated well on less aggressive double or triple DMARD therapy or even on diet and lifestyle changes but I would suggest talking over all possible routes with your doctor.

    I'm sure you already asked what type of RA you have and why he/she wants you to switch to infusions but if you feel like the reply wasn't adequate then ask for other treatment options. For me knowing that my RA went undiagnosed long enough to cause bone erosions is enough for me to at least give the more aggressive meds a try. I don't get injection site reactions with Humira but you can bet I'm a little scared with infusions.

    My biggest dilemma is not knowing if this is as good as it gets. I can still ride my bike (although a lot less than before) and do some yard work but I can't run and I still have swelling in my thumb and ankle. My doctor seems to think we can do more and I'm grateful he wants to try to get it under control as quickly as possible before it becomes a complete train wreck and then later if I feel stable we can try to reduce the meds.

    I'm not sure if I was any help at all but I do hope you get it all sorted out soon!

  • This is very helpful!

    My blood work is negative. It was the combination of the negative blood work and hand xrays showing inflammation that convinced the rhuemy to take my case. My case is "unusual" in his words. If I recall correctly, and will certainly ask again to confirm, there is no joint erosion which he also considered unusual.

    I have more questions to ask! Thank you!

You may also like...