The Young and the RA

Click Cathy Jesse for interview

TRANSCRIPT OF INTERVIEW WITH CATHY JESSE, 42-YEAR-OLD MOTHER OF THREE:

SP: When were you first diagnosed with RA?

CJ: In June of 2003

SP: What medications have you tried so far?

CJ: I’ve tried methotrexate, Enbrel, Humira, Remicade, Plaquenil, Celebrex, Arava and a list of others for other ailments that went along with rheumatoid arthritis.

SP: And what reactions have you had to these medications. Have any of them even worked?

CJ: Well, most of them have not worked. But I had an anaphylactic reaction to Remicade, I had blood red hives on my neck, chest and face for about nine days and was in a stupor right after the infusion. Methotrexate makes me nauseated and just sick to my stomach. Humira agreed with me*, Plaquenil gave me a bad headache, and I felt like I had the flu, and Arava made me sick to my stomach. Not had a good experience.

SP: What reactions were the hardest to deal with?

CJ: The Remicade reaction was the hardest. I thought that I was going to die, and it really scared me. I have to deal with the reaction of methotrexate weekly, so I struggle with that now.

SP: And what medications are you currently on then?

CJ: Right now I’m only on methotrexate for my rheumatoid arthritis. I’m taking other medications to deal with the effects of methotrexate as well.

SP: Ok.  And what other ones are you taking to help deal with that?

CJ: Protonix.

SP: And what does that help with? Does that help your stomach or…

CP: Yeah, I have really bad gastro-esophageal reflex from the methotrexate weekly, so I take this every day, twice a day.

SP: And then how has having RA affected your life?

CJ: RA has changed the person I am. I am no longer able to do the activities I use to do. I can’t work. The bone erosion in my hand is very bad, so it’s made me unable to do a lot of basic tasks with my hands, which is very frustrating. And I spend a lot of time in the house now, which I never did before.

*NOTE: Despite working for her, Jesse is no longer on Humira due to the high cost of the drug and an increase in medication co-pay, which has made the drug cost about $300 a month. Paying for the newer but more expensive biologic drugs has become a huge problem for many people with RA.  

I thought I would talk about something more personal in today’s post. As I mentioned in my earlier post about my diagnosis, I have had problems with my left middle finger since the very beginning. I lost movement in it about four months after being diagnosed with RA. I am now, four years later, looking at having surgery to fix the problem.

I went in about a week ago to a hand surgeon to see what my options were. From there I was sent to have an ultrasound done of my hand. (I know! An ultrasound of my hand! I didn’t even know they could do that.) The procedure took over an hour to do, but it was amazing everything it showed. (I am hoping I can get pictures of it to put up on the site. When I see the hand surgeon for my follow-up appointment, I’ll ask. I think you will find them very interesting.)

According to the ultrasound technician, my finger and hand showed signs of tenosynovitis, inflammation of the lining of the sheath that surrounds the tendons in my finger and hand.

The good news is that the tenosynovitis is not active and thus not causing erosion, and also the surgery to get rid of tenosynovitis is a lot less invasive than if I had a snapped tendon. If my tendon had been snapped or gone completely, they would have to take a tendon from my wrist to replace it, and then I’d have to have eight or so weeks of physical therapy. All in all, a lot of time and energy.

But, according to the surgeon, if it is tenosynovitis, they just go in and remove the inflammation, and I can be up and moving it in the same day! (Or practically the same day.) A lot less invasive, right?

I have to go back and see the surgeon to hear the final word on what kind of surgery will be done, but the results of the ultrasound were promising! I’ll keep you in the loop.

I also found it interesting to learn that there are other reasons a person can get tenosynovitis. One blog I found mention “texting” as a cause, which I found amusing.

Until next time,

S.P. 

Another complication of RA I recently read about is Felty’s syndrome:

“Symptoms of Felty’s syndrome include severe rheumatoid arthritis that is present for at least ten years, enlarged spleen, low white blood cell count, fatigue, loss of appetite, weight loss, eye burning and discharge, paleness, ulcers on legs, skin discoloration, anemia, vasculitis and a general feeling of discomfort.”

Complications of Felty’s syndrome include splenic rupture, life-threatening infection and liver involvement. Those with Felty’s syndrome also have an increased risk of developing cancer” (Informative Post).

It is a bit scary to have another thing to worry about on top of already having RA. I mean, a spleen rupture? That is just too much to take. Fortunately, it only affects less than one percent of those with RA and may be decreasing due to the better RA treatment currently available. Just another reason to see a rheumatologist and get on some good medications. I just thought it was an interesting topic. So take a look at is. Make sure to talk to a doctor right away if you experience any of the symptoms mentioned above.

Until next time,

S.P.