Annie - moving to fortnightly fusion

anniesmum

Hi everyone - I hope you are doing well. I havent been on for ages and I am sorry.
Annie has not been great at all. Poor thing - nothing has really controlled her arthritis as we reach her first year anniversary of this awful disease. She is now off her injections of mtx and embrel - yipee says Annie and I have to say I am so pleased not be going through the trauma of jabbing her three times a week. We have swopped to oral mtx which she can swollen - another skill my little 6 year old has learnt of Christmas. So we are moving to a very new treatment which is meant to have excellent results for Systemic JIA. So new in fact that it has a really difficult name which I cannot remember because I cannot pronounce it. Anyway it means she will go into the LGI every two weeks for a fusion of steroids and the unpronouncible meds. They are then hoping this will work and we can expand the time between treatments and drop the steroid infusion.
So hears hoping - does anyone else know what I am talking about - the meds starts with Tochi something.
Take care all.
Lucy

andylamb

Good luck Lucy. I'll be keeping everything crossed for Annie.

This disease is an absolute nightmare, but the drugs are getting better and better all the time.

Let us know how it goes,
Andy

dreamdaisy

Tocilizumab? I wish her well and I hope it works for her. DD

anniesmum

DD - oh you are a wise owl. Yes, do you know anything about it? I shall go google it now. L x

dreamdaisy

Not a thing, I am sorry to say. Google by all means but don't allow tinterweb to scare you (so much 'fact' on there is anything but). Her rheumatology team should be able to give you all the info you need, ring them. I wish you both well. DD

PS I completely forgot to ask - when do you hope she will start the infusions? Does the meth and enbrel have to clear her system first? I dimly recall that being the case with me when I switched anti TNFs, I suppose the same would apply, anyhoo, I hope she is keeping as well as she can. DD

radders

Hi Lucy, am sorry mtx and enbrel not worked out - but thank goodness for rheumo doctors who don't give up trying to make these little ones better.
Wishing you and Annie the best of everything
Kath and Betty

lare73

hi, so sorry to hear annie is having a hard time, its so difficult getting to grips with new medicines.
my fingers are tightly crossed that this works for her.

say hiya from tom and me xx

fayrose

Oh gosh, hard to read. This is an awful illness for adults, I can't imagine what the poor little kids go through.

Wishing you all the best Lucy and huge hugs for Annie, brave little girl she must be. xxx

anita01

Hi Lucy,

I have only just found this new forum, and wanted to say HI, as my daughter also has SOJIA too .Emma is now 8 1/2 yrs and has tried methotrexate with no success. We are also waiting to hear if Gt Ormond St will start her on Tox... or Infliximab infusion, depending on funding.

She is steroid dependant, having decreased a couple of times and flared. We have had alot of problems with co-operation with drugs and blood tests which hasn't helped. She has now started seeing a psycologist which i hope will be helpful.

How has JIA affected Annie? Emma has hypermobility, and seems to have as much muscle pain as joints, she hasn't ever had a huge swollen joint, just puffiness visible with a bit of heat,

Whereabouts in the country are you? We are in Essex, Have you been to any family info weekends? we went to the ccaa weekend last year which was really helpful, and arthritis care have a south of england family day on their website too.

Take care,
Anita, xx

anniesmum

Hi Anita,
It is really good to hear from you. I feel there are not many of us dealing with the Systemic version of arthritis but I am sorry to hear that your daughter, Emma has it How long has she had it? How are you coping? What is hypermobility?
Like Emma , Annie has muscle pain but also joint pain which seems to almost move around her body. So some day it effects her legs, then back, kneck then knees or a combo of any of them. She has had swollen hot joints in the past and has had steroid joint injections. She has had the rash and very high temperature spikes. She has looked pale, black bags and lacks any bounce. Like Emma mtx didn't work or Embrel and we have been relying on prednisolone to see her through.
We are now on the Tocilizumab fusions and had 3 (she has them every 2 weeks) - annie is the best she has been in over a year. She has loads more energy, colour in her cheeks and is alot happier. The temperature spikes and rashes have gone. We are now trying to get her off the pred and her aches and pains are now coming back which we are trying to control through nurofen.
I am fearful that we are going to struggle to get her to be steroid free at the moment which really upsets me. She hasn't really grown in the last year - her friends seem to be shooting up around her! And then when I think of the other side effects.......
I have now really gone on - sorry.
We live in Yorkshire and go to the Leeds General Infirmary who have been great and really supportive. We have been to one family workshop and I think they are planning more.
Hope you are taking care.
Lucy

dreamdaisy

Hi anniesmum, it's good to hear that the tocilizumab infusions are having such a positive effect - let's hope that lasts. I note that you are trying to get her off the steroids: I am devoting this whole year to doing just that. What dose is she on, how often do you reduce it and by how much? These drugs can be very hard to come off and I know it shouldn't be done too quickly. In the past I have reached a 5mg daily dose then things have all gone wrong and I have had to up it again. I don't want that to happen this time, hence the crawling speed of the reduction! I wish you both well. DD

anniesmum

Hi DD - Good to hear from you. Like you every time we get her to 5mg Arthur kicks in again. We have done it slowly twice and this time we have got to 5mg one day and 0 the next!!! This is fantastic as its the lowest dose since she stated steroids over a year ago but the pain is creeping back in. In the main we can control the pain with brufen but at least the toci infusion seems to be keeping the systemic symptoms at bay. The consultant would rather do more steroid joint injections than up the oral dose of pred if the pain continues - so we'll see how we go.....
I really wish you luck with your steroid reduction quest - not easy, I am sure, as just watching Annie for a year I know quite a high dose really has made differences to her pain and energy levels. Its such a shame they have such horrid side effects.

dreamdaisy

Blimey - five to zero then five again? Heck. Them's big differences! I have been on them for just on four years and I know my body has forgotten how to make its own, proper version of this lovely stuff hence my creeping reduction. I am currently on 12.5 daily, come Wednesday that will be reduced to 11.5 for three weeks, then 11 for three weeks then 10 for three weeks. After that I will probably alternate a .5mg drop with a 1 mg drop as I want to get off them once and for all. Apparently below 5 per day is the hardest - even if I end up alternating a 1mg dose with nothing for months then that is what I shall do. Perhaps it's different with the smaller humans, I don't know, but I really do wish her (and you) well with getting off the steroids. DD

(It's just a huge shame that they work so darned well - bloody typical, isn't it?)

anniesmum

DD - now that is different but I think it is because the consultant has high hopes for the effectiveness of tocilizimub because last time we did it all very gradually. Annie has been feeling sicky quite a bit which she hasn't done before and I know it is not associated with her oral mtx because it is at random times.....? Wondering if this is coming off the steroids. What do you think?
We had some excellent blood test results this week which is now the second time so I am allowing myself to relax a little into positvity! It still isn't all plane sailing but Annie is just so much better than she was and she is loving this new energy and bounce she possesses. Watching her running into school with her pals laughing makes me so happy I could burst - she hasn't done this simple thing for over a year.
I really hope you to get some positvity soon DD.

lindseyhall

Hi, I'm a mum too. Matthew was 18months when he was diagnosed. Please check out my Facebook forum. We really do keep in touch on here and I'm sure you'll find much of what you experience as a family is in common with many of our stories. Bets wishes. Lindsey X
http://www.facebook.com/permalink.php?story_fbid=10150112588442884&id=12131682883#!/group.php?gid=12131682883