Where We Have Been….


I knew we would be here again… but I am sad nonetheless. Caitlin’s flare refuses
to be knocked back after three pulses of prednisone. Her knees are grapefruits,
and her hands and wrists are so swollen that holding a pencil is out of the
question. Her ankles look like half tennis balls, and her neck joined in the
fun today as well. We were fortunate enough to get into the rheumy today when
somebody else canceled an appointment (ours was scheduled for two weeks from


So, we rushed over to the hospital yesterday afternoon to pick up the lab slip and
go to the blood draw. The phlebotomist asked if she was prepping for surgery,
because there were so many vials to fill. Uh…. No. This is the usual for her,
unfortunately. And off the tubes went to test SED, CRP, fibrinogen, ferritin,
CBC, etc. All her inflammation markers are elevated, and she is anemic (very

Over the past several days, I’ve been thinking of all the medications Caitlin has
tried (and failed). There is an entire journey wrapped in each attempt – each
was a difficult decision, worrying about potential side effects, not only in
the short term, but also the long term risks of increased cancer potential.
This was followed by insurance approval, scheduling, a build-up of
anticipation. Then the drug itself….Side effects, waiting… hope waning. After a
time, doubt growing… then resignation that another option had failed. And back
to the drawing board.

With a quick disclaimer to the good sponsors and drug makers, as well as to all of
the people who have success with any of these medications (they work for a lot
of people) – this is just US.

This is a quick recap of where we have been:

Methotrexate – both injectable and oral. Luckily, we’ve never had any problems with this med and she’s been on it for almost nine years. I actually credit it for preventing more damage than she already has….naturally, she takes Leucovorin (folinic acid) 24 hrs
after her methotexate.

Naprosyn – again, we’ve been lucky. Though we usually have paired this with some type of stomach protecting medicine (pepcid,prevacid), this NSAID has only seemed to
cause a pre-ulcer for Caitlin on one or two occasions. We took additional
medication (Carafate) to heal her stomach lining. But I know many
children have much greater stomach problems with this one…..

Enbrel- Twice weekly injections. This was her first biologic. She was on it before it was approved for children. I watched a video and practiced in the doctor’s office on an
orange. I became the one to give the shots, pretty much. I wish so much that it
had worked. We stuck with it almost a year.

Humira– Weekly injection for her – and it’s a burner. She used to run and hide in her closet on shot days while my younger son crawled under the kitchen table to wait until shot time was over. We gave it 8 months.

Remicade – Infusion every 2-3 weeks. – not a bad process at all, but she suffered mild allergic reaction, as do many, because it is murine (made with mouse protein). Heavy duty Benadryl took care of the side effects and knocked her out for most of the infusion. We
were really hoping, but no.

Kineret– Daily injection – also a real burner. We were very hopeful, as this is an IL-1 blocker as opposed to the other 3 biologics, which are TNF blocker / modifiers. This was not a good period of time. Lots of anxiety. It would start hours before she knew the
shot was coming… and nothing seemed to help. Not ice. Not emla cream. Not
princess bandaids. I can remember her begging me to skip this shot on Christmas

Cytoxan– Another DMARD which unfortunately requires lots of water ingestion – cytoxan can build up in the bladder and lead to bladder cancer. We had to force fluids and monitor quite a bit. It had no positive impact and I was happy to get rid of it.

Cyclosporine – Another DMARD which had the unfortunate side effect of increased hair growth. She was five, so most kids left her alone – but she had a soft downy fur on her arms, back and face. It also did not improve her arthitis markedly.

Thaildomide– This drug which once caused terrible birth defects in babies whose mothers took the drug as an anti-nausea med during pregnancy, has resurfaced with some success in treating other diseases. In particular, it has been used in treating systemic JIA. We had to complete a phone survey every month, including a sexual history for my
8-9 year old due to the heavy precautions to prevent misuse. The package had a
picture of a baby with no arms on the side as a warning. Caitlin developed the
side effect of peripheral neuropathy – tingling and loss of sensation in the
limbs. We discontinued and the side effect went away.

IVIG– This is an infusion of immunoglobulin. The process took about 10 hours… it was
an extremely slow infusion about once a month. It had the most difficult side
effects of nausea, vomiting and encephalitis (swelling of her brain). She would
have excruciating headaches about 24 hours after infusion and nothing seemed to
be able to touch it. It worked the first few times, and then seemed to work
less and less, which is common. We did this for six months. Unfortunately, she
remembers this.

Vicodin- Mostly for the hip pain in the months leading up to the surgery. Fortunately, it’s fairly rare that she needs this. Luckily, she does not have any nausea from this med….

There have also been two clinical trials. One was an oral gamma-globulin in a
giant horse pill. Nothing gained, nothing lost. The other was an injection –
weekly – for a new IL-1 blocker (rilonacept). The injection burned, and
it never seemed to really bring relief.

None of the medications, or combinations of meds, was able to control Caitlin’s
arthritis for any length of time. Over and over again, we have gone back to prednisone
to make her functional and relieve the pain.

It’s been two years since we took the last big medication. Her controlled state in
the interim has been unexplainable. We don’t know why the switch was off…. But
now it appears to be on again. Several new medications have come to market.
It’s quite a relief, because we were nearly out of options.

Now, we have more choices to make….


This entry was posted in Anxiety, Biologics - Enbrel, Flares, Humira, Kineret, Medications, Methotrexate, Prednisone, Remicade, Remission. Bookmark the permalink.

One Response to Where We Have Been….

  1. kali says:

    I came across this post, I realize its from 2010. My daughter daughter was dx with jra/jia almost a yr ago. So I understand the your journey. We also tried the embrel, humira (burning) and were just about to start remicaid. Its awful to watch ur kids suffer, and feel helpless. We tried naturopaths too. I hope ur daughter is well and she went in remission. Or that you found a drug that worked for her. I wld be interested in knowing what rx she stayed with… Good luck and godd bless

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