To see the accompanying nail art click here.
This post is way overdue but I guess it works out better since I can talk about how well my new medication works.
For a year I was on weekly Orencia subcutaneous (under-skin) self-injections. I thought they were great. Until they were not anymore and stopped working. I tried Xeljanx for a month with absolutely no results. It was like I was on no medication whatsoever. So, I went back to Orencia.
On the first round of Orencia, I felt 80%! That had to be the record so far. When I returned to it I never felt better than 50%. It was a huge bummer.
My rheumatologist and I decided to try the monthly Orencia IV (through the vein) infusion instead. What was the harm? I planned on living in the same place for at least 6-12 more months and it was best to start new medications in as controlled environment as possible. We knew I had success with the subq (abbreviation for subcutaneous) injections and I would be more receptive to the higher dosage extended over a month.
I am not going to lie. I was a little upset.
When starting the weekly subq injections, I had to sit with the IV to kick-start the process. Three days later, I was hiking, climbing, active!
I was expecting the same reaction. So when I still felt lousy, my spirits sank.
Two weeks later, like clockwork, I felt great..but, only for two weeks.
There was a mix up with my insurance and I sat for the infusion a week late. (Note: with all the changes in public healthcare, private companies are more calculated about which and from where they will cover biological medications.)
There was one disastrous week when the previous month wore off and the current dose settled.
Now we are careful to make sure I get the infusion on time every month.
I feel great. (For the most part.)
I am easing my way back into climbing.
The only caveat? If I really mess up and flare, I do not have as many quick-fix meds (like my weekly injections) to “put out the fire”. I can only rely on prednisone. Slow and steady wins the race. Rather, slow and steady is my only option to win the race 😉
Hi, my name is Monica and I have RA.
the Rite of Aging...early 
I’m glad to hear that you are feeling better!! YAY!!
Do you ever get stressed about the financial issues related to your illness? You mentioned insurance in your blog entry which made me curious … You haven’t really discussed the financial aspect of having R.A.
I know for me, being unable to work has cost me a lot!! It’s given a whole new meaning to the expression, “Save for a rainy day”. That rainy day is inevitable in my life. Instead of saving for travelling or holidays, I have to think about saving for those days when I really can’t work.
A little story, it’s ancient history at this point but I’ll never really forget because it left such a bad taste in my mouth – if you know what I mean. After taking two weeks off of work a few years ago, which was doctors orders … The people I worked with thought I had been on vacation. And when I said, “I was stuck in bed!!” They just didn’t really believe me. Because that is so far from the lives they lead. They can’t imagine going through what I have been through … Being in so much pain that you can’t hold a cup of coffee – how can anyone young relate to that? They relate to slacking off, taking a day off to hang out with friends – not to stay in bed and rest.
Having people think I didn’t care about my job or that I was just being lazy, that was really hurtful!!
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Thank you!
I am actually very lucky I am still under my father’s insurance and the coverage is really awesome. I do not have to pay for any of my medications. That being said, I am only blanketed for a couple more years so I am saving up for that “rainy day”. I have thought of a great blog post about this though which I will start working on because you are right! There is a huge financial aspect to auto-immunes that is not talked about!
I understand completely. I sometimes find people have a great amount of “disbelief” about how bad my condition actually is. I do not allow people to see me when I am feeling very lousy so, when they do see me they can’t wrap their head around how bad a flare can get. This sounds awful but sometimes I really feel like calling someone (or, having someone call for me) when I am stuck in bed, just so these people can really see what I am going through!
I have definitely been there with certain people. I almost wish sometimes people did not say anything in response because they cannot even fathom what it is like to have an active autoimmune.
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