Friday, September 17, 2010

NEW Med's/Clinic Review

Think I have a trend going on now of  "reviewing" events in my life.   We had our clinic appointment yesterday.  Aunt Amy and Uncle Ray drove all the way to the hospital to be with us during our appointment.  We met a new fellow, which is a new doctor to rheumatology.  I looked at our nurse checking us in and said raising one eyebrow with a wicked smile, "Really,  do send him in.  I will get him broken in."  The other nurse mouth to me, "fresh meat".   He was younger, and very nice.  I really don't want to tear them apart.  I had let them know about the mistaken "flu diagnosis" that was discussed.  I told him not to apologize.  I was use to it.  Gary was very uncooperative as usual.  I did mention that I am become concerned about Gary's psychological profile.  I wasn't kidding about that in my last post.  I like to joke about things or make light of them to cope but this one keeps tapping me on my shoulder.  He needs help dealing with this.  He is getting older.  He isn't a baby anymore.  He is a little boy.  The fact that his growth and development will involve a large part of his treatment and disease needs to be addressed.  Well not a large part but at least effect his growth and development.  Dr. E came in and did a complete check over like she always does.  She was very careful to make sure she felt all the calcinosis.  I am sure to note any changes for the next appointment.  She wanted to see how deep and shallow they were.  His strength tested of good.  His cuticles looked good.  His labs holding.  But yet the process of the disease is still there.  So we are adding a new medicine.  Lucky you, you can help me decide which one.    One is called Etanercept and the other Tacrolimus.   Gary is doing good, but only because of drugs.  We have graduated from the traditional way of treating Juvenile Dermatomyositis is what the doctor said.  Do I get a T-shirt for that?  What about Gary?  Let's have a party.   I'll take a 13 mile run followed by a vanilla vodka coke and a soak in the hot tub I don't have. Snort weeeep.
 pills.jpg pillz image by bobpaclover7
So with no further delay, I present our choices.

Brand name Enbrel

Injection, so it will be a new shot in addition to methotrexate.
It's a TNF blocker, Tumor Necrosis Factor Blocking Agent which means blah blah blah blah and blah. LOL  sorry. ( I just finish up with Make A Wish foundation with the architect.  Geometry makes turns my brain OFF.)  Anyway, back to Etanercept.  Comes with all the fun warnings like lymphoma and other cancers.  Risk of serious infections. Ect. ect. ect.   Ummm.  It reduces inflammation.  Usually used for arthritis.   You can click on the link to see what you can make of the internet.


Brand name Prograf, protopic
Taken by mouth.
Immunosuppressant Agent, calcineurin Inhibitor.  Which means, you guessed it, blah blah blah blah and blllaaahhh.  Same warnings, risk of cancer, infections.  Warning says do not give to children under 2.   Gary is three but still.   It is used to prevent organ rejection after transplants.  Again, you can click on the word and it will link you to what the internet has to say about it.

At this point I am leaning towards the tacrolimus.  The other is geared toward arthritis.  Gary is not having trouble with that aspect of the dermatomyositis.  It's more the inflammation of his skin not his joints.  But then again its inflammation that is indeed the problem.  This one takes several weeks for see effects.  The other takes several months.

Which would you give your three year old?  This is in addition.  We are not replacing any.  One of these will be added.  The doctor took cyclosporine off the table because it messes with blood pressure.  We already have blood pressure issues.  She also does not want to give him pamidronate because he is to young.  It remodels the bones. Taking calcium from other places and putting it in the bones.   Blah.

So leave me comment, tell me what you think.  It is ultimately my decision so please do not be offended if I don't pick the one medicine you think I should give him or you know what I mean.


  1. Ericka,
    That is so wonderful that your sister and BIL traveled to be with ya'll at your appointment! I to have graduated into an unchartered territory with this disease like you said do we get a tshirt for that....Laugh snort tear....I read a quote the other day when life gives you lemons find someone that life is giving them vodka and have a party we totally need to find the person that life is giving them vodka LOL

    OK so I'll try to be serious now, Gary sounds lots like me in the DM department where the meds are trying to hold my disease but it still blazes....glad they are keeping an eye on the calcinosis! When I read this I had tears in my eyes this just breaks my heart!! I know he and I will get will, I just know it we are in it to win it!

    Hey I can give some in sight here guess what the hubs injects me with every friday night? Hmmmm no guesses well ENBREL....and I will tell you that it isn't bad in the side effect department, I do take it at night after Kelcee goes to sleep and it makes me a bit sleepy but I haven't really noticed many side effects with it! I will tell you my neighbor has a little girl with RA and she is 4 and she is on Enbrel and it has helped her so much!! So I would say go for the Enbrel but I am not familiar with the other drug!

    JHU called yesterday and Rituxan it is with me, I have no choice they are to scared with the IVIG and my joints are a mess and they said Rituxan it is and I asked if i could wait til after Kelcee's bday in October and they said yes....does it make you sick? tired?
    They said that my flare is getting so much worse and so out of control they need to do infusion soon so infusion it is...I am getting the nail bed crap again also blech...

    if you need to talk let me know

    Summer :)

  2. Me again miss me LOL ok anyways I forgot to say that Enbrel helped my skin ALOT that is why I am not red and inflammed all over anymore....I talked to my Dermatologist and he said it is also used in severe cases of I don't know if this helps ya any but hope it does