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 8 week update - 26th July 2014
Brave little girl, nice to see her out and about enjoying herself x
ReplyDeletethanks Rachael x
DeleteSounds like you are all getting used to the new 'normal' (ha to that word!) but it must be unbelievably tough at times. She is a star but I can imagine how much extra strain this is putting on you too :( best of luck for the GA, hope all goes well xx
ReplyDeletethanks Steph. She has been brilliant taking it all in her stride so that has made it so much easier for us - it's just tough when the pain strikes though. x
DeleteIt all must be so tough on you all, but still the little lady smiles. I hope the steroid injection helps xx
ReplyDeletethanks Anne. I keep remembering how brave you and your daughter had to be last year and it keeps us feeling strong. x
DeleteIt's so frustrating when local medical teams change the goalposts without fully understanding everything you're dealing with. She is lucky she has you on her side - it looks like you're both doing brilliantly with a very challenging condition. Really hope things go well with the next procedure and she continues to flourish x
ReplyDeleteShe did really well today - it was her steroid injection under general anasthetic and all went as well as it could. x
DeleteGee this is hard for you all, but so glad you managed to have a good summer. Interesting that you had it as a child. Have you written a post comparing your symptoms, and your treatment? Be interesting to see the difference bet having this in 1970s/80s and now, and also how you moved on and learnt to live with it. How are you finding it as a carer? Maybe you've already written this, but if you haven't, that would be good to know too (although if this is a record for Miss T for the future, I can understand your reticence to be fully honest....) Sx
ReplyDeleteI think it really is interesting to compare as i spent months in hospital immobilised which they now know is awful for arthritis! Also drugs used nowadays like MTX and Enteracept either didn;t exist for JIA before or less used as i don't think it was ever considered for me. It would make an interesting blogpost - will add it to the ever growing list of things i would one-day like to get round to blogging about. x
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