Tag Archives: orencia infusion

Chronicles of the Orencia Infusion: January

28 Tuesday Jan 2014

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My December infusion turned into a January one. The speciality pharmacy I have to work with did not send out the medications on time so I had to re-schedule…again.

 

We placed the IV in my right arm. It did not hurt and I did not even notice the liquid entering my bloodstream. If you read my account of the November infusion, linked here, you might remember I had an extremely poor experience. I was ecstatic that for the first time in months, the IV did not affect me!

 

But wait, it gets better!

I was still functioning that same day. Since I switched to the IV formulation, I always had to take the day off from work because it took so much out of me. This month I was able to run all my errands and I only took a two-hour nap! However, I will continue to request the day off just in case because there is no telling how these medications will affect me on any given day. I was kind of hoping this would not happen, given everything else had gone so well.

 

Unfortunately…

I sat with the IV one week late. I am still “new” to this formulation and it is still building up in my body so I cannot really afford to reschedule a dose.  The week following the IV my energy levels tanked, I flared up and had difficulty with normal, everyday tasks. I knew this would happen  because this particular week was the one where last month’s infusion wore off and the new one had yet to kick in.

 

I know I cannot keep taking my medications late like this, especially the most important immuno-suppresant but what can I do if my pharmacy is making me jump through hoops? My doctor’s office and I have had this problem for the last three months! Not right. From now on, after I am done with the IV, the doctor’s assistant will call the specialty pharmacy with me there, have me approve the following month’s shipment and she  will schedule delivery right then and there. Phew!

 

Hopefully there will be no hiccups in February!

 

Hi, my name is Monica and I have RA.

The Orencia Infusion Chronicles: The Sinus Infection

17 Tuesday Dec 2013

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I thought joint pain was bad. I thought flares were bad. I totally forgot how crippling sinus infections were. My head feels like exploding and I cannot tilt my head backwards a quarter of an inch without my head pounding out a tune.

 

Throughout junior high and high school I suffered from intense sinusitis (made worse by the sweltering humidity of the East Coast climate). I was on steroids and antibiotics regularly, as often as once a month! I developed allergies to cats and dogs (ironic, right?) and wore a mask to work. I missed days from school.

As the years passed, mainly junior and senior year of high school, my sinuses stopped draining on their own and there was constant fluid and blood build up. Steam no longer helped and I took higher doses of steroids to counter inflammation. 

I found relief from my sinus problems when I moved to Colorado, for school. Any time I got a cold it turned into a sinus infection, but they were few and far between. However, when I returned to DC, my ENT doctor said it was time for surgery.

The surgery enlarged the sinus canals and ballooned the cavities open. The recovery sucked but I felt awesome! It was summer and I could breathe! I did not live life in a foggy haze! My nose stopped running continuously. The surgery worked. 

 

Then I was diagnosed with RA and started Orencia.

 

Orencia, in particular, suppresses the part of the immune system that fights sinus infections. Whoops. It is rather unfortunate this is the only biological medicine that works for me. 

 

I have to stop the methotrexate injections while I am on antibiotics because my immune system has to work at it’s “best” but hopefully in a couple of days I should feel better. 

 

Oh, Orencia. It is amazing how wonderfully these medications work, but how awful the side-effects? are.

 

Hi, my name is Monica and I have RA.

The Chronicles of the Infusion: November Orencia

27 Wednesday Nov 2013

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I decided to write about the infusion each month because apparently I do not have any clear idea of how I will react.

 

Last month, I was extremely weak. I slept for five hours straight and did not have the energy to take care of my pets the same evening.

This month, except for the sensitivity during the infusion, I felt okay. If I had work this evening, I could have managed!

I slept for about three hours. My arm was relatively weak, and in general, I felt a little tired but otherwise, functional.

 

Definitely a lot better than last month!

The Infusion, Part Three

27 Wednesday Nov 2013

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I should re-name this to the Chronicles of the Infusion or something of the sort.

 

I finally managed to sit for my infusion and was it horrendous! The tech very nicely increased the drip so it finished in 20 minutes vs. the usual 40.

This month we put the IV in my left elbow. We switch the IV between arms because of scarring. The scarring makes me more sensitive to the prick and makes it harder for the tech to find the vein. My left arm has more scarring than my right because of the added blood draws.

 

This month, I was feeling nervous and in turn, faint. My blood pressure was lower than usual and the needle prick was super painful. The tech could not touch my arm at all because of how sensitive I was. Within minutes my arm turned bright red and I formed a rash.

 

I think it was mostly psychological. I completely psyched myself out (which would explain the extremely low blood pressure) but it sucks that my left arm is so much more difficult than my right.

 

Hi, my name is Monica and I have RA.

The Infusion, Part Two

22 Friday Nov 2013

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Apologies on the hiatus, I flared up from playing with my dog and I felt too tired and uninspired to write let alone paint my nails.

Speaking of which, I am sitting late for my infusion this month…again!

 

I love Orencia. While I do not feel 100% at any given point of time, I feel close most days. However, I am very sensitive to medications and being pumped full of 500mg of immuno-suppresant takes it out of me.

I am more or less down for a day or two.

 

Last month, when I got home, my dogs came running to see me – tails wagging, eyes bright, jumping up and down…

Within 5 seconds, their ears went flat against their heads, tails went in between their legs, and their head and shoulders went low.

I was nervous. I did not feel too bad. A little tired but that was all.

 

Saachi and Affie crawled into bed with me and slept on top of me. The cats joined us five minutes later and added themselves to the pile.

We looked like a family of ferrets.

 

Animals are extremely intuitive. They catch on to emotions and feelings we may not know about ourselves.

But even during a bad flare my pets never act this way.

 

Honestly, I was afraid to go to sleep.

Were they acting like this because I had a reaction I did not even know about? Was it safe to close my eyes?

I held out as long as I could but eventually I was too tired to care. I wanted to sleep.

Needless to say, I did wake up…five hours later…

And none of my pets had moved.

 

Hi, my name is Monica and I have RA.

The Infusion

15 Friday Nov 2013

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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.