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 (in no specific order):
Methotrexate – DMARD (injectable and oral). This was one of the first medications that we ever tried. It started oral, but right out of the injectable vile… it is an un-natural yellow/orange color and tasted horrible. The oral didn’t seem to do the trick so onto injectable – Sadie could always taste the medication even when given to her by injection. To this day the discussion of methotrexate gives Sadie a recall of the taste. She has been on methotraxate on/off (mostly on) for the entire time she has been treated for JRA.
Naproxen - NSAID (oral) this NSAID was the first tried and lasted a few years. Actually, it lasted close to 6 years. She came off this medication in 2005 and went back to it in 2008 for a short time.
Enbrel – Biologic TNF-a (Twice weekly injections). This was her first biologic. She was on it before it was approved for children. I became the one to give the shots, pretty much. I wish so much that it had worked (as it has been the key for me). She was on this medication for 7 months.
Humira - Biologic TNF-a (Weekly injection) – and it’s a burner. She cannot stand this medication and the injections have always been difficult. She was only able to go from weekly to bi-weekly (as suggested by the manufacture) for one dose. We were hopeful it would start doing it’s thing and we could go to every 10 days; that never happened. This lasted 6.5 months.
Remicade – Biologic TNF-a (Infusion every 4 weeks) – this medication started for Sadie in early 2006 and was stopped in November of 2009. I think this was the best medication she has used so far; the reason that we stopped this medication is during the process of her treatment with Remi (as I call it) she had 2 synovecomys and both showed active arthritic inflammation. It was decided that maybe she was building a tolerance and needed to try something else.
Ultram – Analgesic (oral). Was prescribed to be given when needed; I resisted, but in the last few months she is taking anywhere from 1 to 4 a day. This was primarily to help with ankle pain, but in the recent weeks she has been using this for the increased knee pain.
Ornicia - Biologic Tcell (infusion) – another medication given before the FDA approval for kids. She stopped this very shortly after starting as she was under a trail and in order to add any additional medications she could not continue this treatment; however it was not proving very effective as her neck which was not involved at the start of treatment started having issues.
Methoprednisone – Corticosteroids (infusion) – this is usually given in conjunction with Remicade in a smaller dose in case of allergic reaction. However, it can be given in the form of a “pulse” which is one big hit of the medication that can sometime give an immediate relief of pain and allow the primary medication to start to be effective. Commonly Sadie received the “normal” dose, but we did attempt the “pulse” on two different occasions. The first was just a small increase over normal and we didn’t have any huge issues other than it does affect her mood and ability to sleep. The second attempt was a higher dose and created horrible nightmares, tremors, sweating, jitters, anxiety and generally horrible mood swings. That was the LAST of the pulse and we will not be attempting that again.
Prednisone - Corticosteroids (infusion/injectable/oral) – usually given at a low dose or started at a higher dose and tapered out. She has done both. Anytime the higher dose is given she responds amazingly well. This is why her spring/summer last year was so amazing. However, once the taper comes, the issues return. She has been on a low dose for over 1 year and a small increase was given a little over a month ago, no results. Another way to dose this medication is by injection into the affected site “joint injections” – Sadie had several in her right ankle and one in her left wrist (very early on) and it was proposed to do an injection in her left knee recently; we are opting away from this for now, but if the pain continues this way we just aren’t sure.
Immuran – DMARD (oral) – this was the first medication tried after she ended Methotrexate. After first dose she developed an allergic reaction.
Avara - DMARD (oral) – replaced Immuran. She was this for a little over a year and then moved back to Methotrexate.
Meloxicam - NSAID (oral) – replaced Naproxen. Has been on this medication since early 2009.
Zithromax – Antibiotic (oral) – treatment for possible Lyme(s); this is its own post, but there was a period of 4 months where Sadie was being treated based on a possibly positive Lyme test; her response to treatment resulted in no immediate changes other than her liver not taking the high dose of zithromax and multiple other treatments very well. She never did have a true positive result, but one that was questionable. My notes specifically state this in my notebook: 9/07 – not Lyme positive, but still suspect. Ultimately we made the decisions without a firm conclusion to lymes and the fact her liver was not responding well at all; we stopped the Lyme’s treatment.
Acyclovir – Antiviral (IV/oral) – Sadie started Acyclovir as in patient confined to isolation at Children’s due to an outbreak of shingles in Oct 08’. She was treated with a 7 day IV high dose anti-viral. This was done as her immune system was not strong enough on its own to fight the shingles and there can be serious side effects for patience with immune suppressant medications. After discharge she has been consistently on this medication orally as there is a higher change of her getting shingles again.
Cellcept – DMARD (oral) – This replaced methotraxate in late 2009 and just recently had an increase in dose.
Oxycodone – Analgesic (oral) – This medication has been used several times after surgery.
In addition to the prescription medications she has also been on tons of supplements over the years and continues - including calcium, vitamin D, multi-vitamins, melatonin (for sleep issues), pro-biotic, glutamine, fish oil (liquid and gel tabs) and this list goes on and on….
