It's been a while since I did the last update on Miss T and her Juvenile Idiopathic Arthritis. I feel it is important to keep a record of her treatment and progress as she may have to face this with her own children or they may be others out there with a similar diagnosis who find it useful.
We visited Great Ormond Street a few weeks ago as they had asked us to go back if there was still swelling in her left foot over the summer.
They've decided to increase her weekly MTX injection dose to 12.5mg from the 10mg that she was on. They also wanted to do a steroid injection into her foot. This has come up locally at short notice so she is going into hospital next week to have it done. It's classed as an operation as they have to do it under general anasthetic and although there are some risks, they are hopeful that it will be successful.
So it is hoped that the increased dose of MTX and the steroid injection will help reduce the swelling in that left foot and reduce the pain so that she can walk more and rely on her wheelchair less.
I am still so happy with how she is doing as to see her play with her friends and play at the park is just brilliant and a far cry from what I was able to do when I was first struck by Juvenile arthritis when I was 10.
She has had a very 'full' holiday and although there were probably one or two things that we couldn't do because of her JIA, we did lots and lots of things that we wanted to do and having a wheelchair with us was not going to stop us.
In addition to MTX she is still taking naproxen daily and needing omeprazole in conjunction with that, abidec and folic acid which is needed in conjunction with the MTX. She's still a very brave little thing and doesn't complain about her injections. We are using Metaject injections so they are brilliantly simple to use and it reduces the risks for her and means that we can administer them ourselves instead of the nurse coming out.
All areas should be moving to Metaject rather than the old style syringes but as we found out recently there can sometimes be a bit of a battle to get the local healthcare teams to prescribe the correct licensed drug instead of it's inferior and higher risk counterpart. Thankfully it got resolved and the doctor has continued to prescribe the MTX in Metaject form for Miss T.
Blood tests are tough on her as they always seem to struggle to find her veins and her blood doesn't seem to flow very easily once they do. But she still doesn't complain even though we can tell it is painful for her.
She is so fortunate to have had relatively few side effects from MTX. We just need to hope and pray that the higher dose combined with the steroid injection is sufficient for her to make enough progress to not need the next level of drugs which can have far worse side-effects.
I'm going to link all the arthritis related posts I have written below so I have a record of them for ease of reference:
Pain - 8th August 2015
Arthritis Sucks - 10th June 2015
Finding shoes / boots that fit her swollen foot - March 2015
Even two year olds can get arthritis - 19th March 2015
The last thing I expected to hear - on the verge of a formal diagnosis - 12th February 2015
When we thought it was a broken foot originally - 30th January 2015
My GOPO update at week 12 - 7th September 2014
My 10 week update - 14th August 2014
My 8 week update - 26th July 2014
My 4 week update - 30th June 2014