Sister-sister...a family affair.

By LauraMM Tuesday, January 19, 2010

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I was diagnosed with RA 6 months ago. Last week and for the 3 weeks prior I was on vacation trying to enjoy the warm sun of the Caribbean with my husbands and daughter over Christmas and New Years. Over the holidays I found out that on Christmas eve my sister was also diagnosed with RA. This past week has been whirl-wind.

The day before vacation my RA flared and I'm in pain from head-to-toe. I spent a lot of my 4-week vacation sleeping. Everything is difficult. But now I'm a mess with extra emotions. It was difficult on my own because I'm only 27 and I have a daughter who just turned 3. My sister is only 28 and now I cry because she is my best friend I would never wish this on anyone. Part of me is glad I have someone who understands what I am going through and we are both going through extra testing and being put on the same drugs at the same time. But the other part of me would rather be mis-understood and considered lazy than to have her go through this too.

I was on Naprosin and Plaquenil but the Plaquenil is no longer working. My RA factor is 247 and my anti-CCP is well over 200. My sister's RA factor is 191. My sister is now seeing my specialist and he is going to put us both on Humira. I'm scared. The thought of taking an anti-TFN is terrifying! We're both scared, we hate needles but moer than that I hate this pain. He would like us to take methotrexate at the same time but seeing as we are 27 and 28, she is a newly-wed and I have a young family...we both want to plan to have a child. I'm also going to a fertility specialist and I'm not sure if some of my problems are due to to the RA or the Plaquenil.

These next few weeks are going to be intense as we prepare to take the leap from pain to pain management with lowered immune systems. How does one mentally prepare for such a huge leap??!

Comments (4) | Add comment

andrew

1/20/10 5:23pm

I'm so sorry to hear about the impact of RA on you and your sister. I hate that genetic link. Many RAers have been in the same spot...wondering if biologicals are the way to go. While they are not effective on all patients, many find that they get their life back from the impact of biologicals. And, there are new biologicals to treat those for who anti-TNF meds don't work. Re. side effects, the warnings do sound scary. But remember, those only affect a very small percentage of people. There are more positive stories about people getting their lives back from RA. I see the needles as a small pain for much gain.

You are correct in carefully considering all options including biologicals. Read a lot (but be careful of internet material) and talk to your family and doctor.

Andrew

http://lumpe.wordpress.com/

LauraMM

1/21/10 9:05am

Thanks Andrew. Our rheumy is going to start us both on Humira in a couple of weeks. We've both had out first TB test and chest x-ray so now we both happen to go in for our 2nd TB test the same day. It's kind of funny since we share one of my parents' cars for appointments so we're going to carpool and go in together! Talk about support...

Lene Andersen, Health Guide

1/22/10 11:44am

When I first started on the immunosuppressants, I was pretty scared, too. At the time, however, I was in a really bad place, merely getting through each day in a lot of pain from a bad flare and I refrained. Asked myself how much my life was worth, how much I was willing to risk to get back to being able to live my life, to be there for my family, to work, to focus on something other than just getting through each day. And I realized that when you put it like that, it was a no-brainer. I wrote a post about the process of switching to the "bigger meds", whether they be the bigger painkillers or the Biologics - it might give you a few ideas. And for me - and lots of other people - the Biologics have miracle medications. I started on Enbrel, switched to Humira three years ago and it has given me my life back and more. From this end, where I sit having been on Biologics for five years, they have been a gift, a miracle and I'm grateful every day.

For most people, managing the immunosuppressants aspect of it is fairly easy - carry a bottle of hand sanitizer, wash your hands often, when you can, find different ways of touching public things like doorknobs, elevator buttons, etc. (use your elbow, the side of your hand, press buttons with your keys), and help your family and friends to understand that when they are sick, they need to stay away from you. Side effects are usually fairly tolerable and dealing with them quickly becomes second nature - see my post from last year about managing side effects.

I hope you and your sister will do as well on Humira as so many other have. It truly sucks that the two of you both have it, yet having a built-in support group like that where you can see each other through means some good is growing there.

Lene Andersen, Health Guide

1/22/10 12:44pm

Another user just posted about their experience with Humira.

Sister-sister...a family affair.

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