New meds for my grandaughter and new information

Just though I'd share this as it may be of interest to some of you about to start Biologics. My Granddaughters 3 mos appointment was today. It turned out pretty cool because Peggy Schlesinger was there and came into introduce herself before camp next week. (I talked about her in another thread) anyway Tana's doc apologized to her for having had to wait this long to start a biologic ( 3 mos long?????) but the good thing is she would have to take the MTX anyway but 3 mos from now if things are GREAT they can start backing her off the MTX SLOWLY. They have learned it should be weaned over a few weeks or a major flare can ensue EVEN if the drug seems ineffective. They are publishing soon.

After they both got done gushing over the baby quilt Tana brought for the docs new baby (she just adopted) they got to the biologic. Peggy Schlesinger made the comment that it won't be much longer that PsA patients should NOT have to wait to get started on a biologic as the evidence is clear that the regular DMARDs are great supplemental medications and add to the biologics for reasons they don't understand but generally don't work as a stand alone.

Then the conversation took a wierd turn. Melody pulled out three syringes and two auto clicks and told Tana she would have to decide between Humira and Enbrel. (I wanted Enbrel because I have a few boxes and that stuff is costly) What Melody told Tana is what caught me off guard (and Peggy Schlesinger was confirming) is that if the shots were bothering Tana (they weren't until Tana figured out she was taking two shots a week no instead of one) is that the AUTO-Click pens hurt the most (we know that) and have the most site reactions because they have the most preservative and hurt the most because of the amount of preservative.

Humira the worst in both prefilled and auto click. Enbrel had the least site reaction and the least sting. Peggy Schlesinger said she usually recommended the self draw Enbrel for the kiddos because it virtually had no sting.

She also recommened that PsA patients NOT use the sure-click because with already sensitive skin there is a a minor Koebner effect from the spring action and it has put off some from using the biomeds. The only time she recommended the sure click was if people freaked out from seeing the needle.

Tana chose the prefilled Enbrel because he Grandpa was too old to see how much medicine he was getting and she wanted the right amount.

This is really validating, isnt it? It’s so nice to know that we were right all along. :slight_smile:

What a wonderfully informative consult you had. Thanks so much for sharing it with us, Lamb! As Grumpy says, it’s nice to know that the suspicions that we have as a result of the shared experiences of many, many good people here, were right all along.

I hope the stepped-up treatment for your Tana goes really well. And I hope that boot camp is wonderful for you!

By giving Tana some say in her biologic, I hope she'll buy into the treatment plan more wholeheartedly. I haven't known kids with our disease but I have seen diabetic teens rebel against treatment to their great detriment. Anything that helps a child or teen stay with the program is to the good.

Interesting about the meth. Fits with my experience. Unfortunately, I had to go off it immediately for surgery. Typical- seems like folks usually do go off it with no taper because of surgery, illness, funky liver enzymes, etc. Let us know when their paper publishes and what their recommendations are.

I use the sureclick injectors for my Enbrel and don't have a problem. Yes, they do sting a bit but in around 20 shots I've only had about 4 site reactions ( a pink blotch). I always inject in my front upper thighs,

Great info lamb on quite a few fronts, thanks. My P is starting to flare just 5 days after not taking my MTX dose this weekend! So weaning off it makes sense to me. Come to think of it 1 knuckle has begun to ache for the last couple of days too.