Rheumatoid Arthritis Remission

I dearly love this photo. If anyone lays down for a snooze or to read on our sofa, Max Kitty is almost immediately there ready for a snuggle. He loves to be wrapped up in a fleece blanket on a lap for sometimes hours if you can stay on the sofa that long. Munchkin #2 was playing games on the Husband's iPad which made for the perfect Max snuggle opportunity.

Other days, Max would snuggle in with my Munchkin #2 while we had her joints packed with ice because of sore arthritis knees or wrists. Thankfully, we have not had to do that for a while.

The rheumatologist here in the States that we go to is talking 'remission' with regards to Munchkin #2's rheumatoid.  I know that the terminology has changed a bit, but I am still most comfortable and knowledgeable using the term 'rheumatoid'.  When we both first heard this from the rheumy, you can imagine the shock. The initial reaction was actually fear.  My kid, almost in tears, begged the rheumy not to take her meds away from her.  Now, however, Munchkin #2 is hoping to get away from having to take the weekly methotrexate injections.

I have tremendous fear about all this because of all we went through to get those meds. For my daughter, that vile nasty injectable danger was a actually miracle in a bottle. For us, it wasn't this horrid thing to be afraid of, but a medicine to be embraced. The effects were amazing in a good way.

So now that we are looking at walking away from this drug, it is of vital importance that my daughter and I feel VERY comfortable with our rheumy. And, unfortunately, neither of us really does. We're both really scared about the whole thing. My daughter is at the point where she feels it is worthless to talk with the rheumy at all. Not good.

So...being the way that I am, I decided to do some digging on the internet about RA remission. It is not a cut and dry kind of issue. First, give this a read.

http://www.arthritisselfmanagement.com/condition/rheumatoid/remission-a-goal-of-ra-treatment/?page=all

Remission is a definite goal, but one of the things we both worry about is having a flare when my daughter just doesn't have time to mess with flares. Flares disrupt daily living. They can make simple things like changing classes via stairways with a backpack very difficult. In the middle of a flare, sports and PE are usually off the menu - a almost horrifying thought to a child who loves her sports. My daughter gave up competitive gymnastics because of this disease, and she can't run track because it hurts her knees (a child who wants to run should be able to run!). Just regular PE class can cause knee pain even when she is not in a flare. By going off meds, we are greatly increasing the risk of a flare.

When my munchkin was first diagnosed, she used to have to fill out forms about how she was feeling and how her daily life was. I was reminded of this by this article:
http://www.npr.org/blogs/health/2013/11/17/242366259/why-a-patient-s-story-matters-more-than-a-computer-checklist?ft=1&f=1001

We once visited a clinic where I mailed almost 70 pages of medical records weeks ahead of  time that the rheumy demanded access to. We got to the office, and he hadn't read ANY of them. When we tried to explain her symptoms, her pain levels were not believed. He felt joints but she looked 'ok'. MRI's were done showing bits of fluid in joints here and there, but she was proclaimed 'normal' yet we knew she had active RA. Her RA was so active that another rheumy in a different city (country actually) put her on injectable methotrexate changing her life.

The forms that tend to be standard in so many clinics, we have not filled out once since starting with the current pediatric rheumy here in the States. For bits on these forms, have a read:
http://www.sf-36.org/demos/SF-36.html

And....  http://www.ncbi.nlm.nih.gov/pubmed/16273780 

It gets frustrating when all the rheumy cares about is what they can see and feel in the patient. In the case of my daughter, she only had severe morning stiffness at her total rock bottom of 'bad flare'. As a mom, I am terrified of the rheumy who doesn't listen to my daughter taking her miracle med away and not letting her have it back until she is at rock bottom bad flare again.

We have an appointment with the rheumy the first week of December. We have tried changing to a different rheumy within the practice, but they won't let us. Hideously frustrating.

Here is hoping and praying that the remission is real and that communication with the rheumy is better. Otherwise, I am ready to drive to another city to find a doctor whom we both feel we can trust will not let rock bottom bad flare happen ever again.

Peace.