Annie Update - steroid drip

anniesmum · 7. Dec 2010, 13:48

Hi All,
Well, we moved onto Embrel 3 weeks ago and have yet to see any difference. In fact Annie has had a cold and her Systemic rash and temperatures have been back so she has been worse than for a long time.

We went back to see the consultant today and she is going into hospital tomorrow, thursday and friday as a day patient for a steroid drip. The consultant thinks this will help as so far the only things to keep her Systemic Arthritis under control are the steroids. We then up the oral steroids until after Christmas and revue the embrel/mtx combo then. My instinct is at this stage is that it isnt working. I think the drip will work wonders and hopefully Annie will have some bounce back ready for Christmas but we are back to yet another waiting game as far as long term medication goes. I am still reeling from this disease - even 11 months in. It is so determined and wont leave my little girl alone. I find it hard to get my head round at times.

I didn't ask what the next set of medicines we can try and what they are called and if they are by injection. I am now wishing I had but maybe we cross that bridge if we have to.......the consultant does feel we can get Annie better than she is now but it is when?

Take care all of you and thanks for listening.

Lucy

gickygawky · 7. Dec 2010, 14:30

Hi there Lucy,

I just wanted to let you know to keep your fingers crossed a little longer for the Enbrel to work for little Annie - it took me a whole 12 weeks for it to even begin working but once it did I improved significantly.

I really hope you see some results shortly and that Annie starts to feel a bit better.

Kind Regards

radders · 7. Dec 2010, 14:40

Oh Lucy, I'm so sorry that the arthritis is still active for Annie.

We did have to get towards the end of the three months to see the Embrel work for longer than the few days within doses (Bet would really dip on the day leading up to the next dose).

My heart's going out to you all.

If the information is of any use, Bet had the IV steroids in April and she was bouncing by the end of the first day.

Kath x

dreamdaisy · 7. Dec 2010, 17:31

enbrel etc can take up to threee months to start having an effect, just hang on in there, I hope the steroids help and I wish you all well. DD

justinbarrow · 11. Dec 2010, 08:56

I found that the IV steroids worked quickly and was amazed at how the pain went away, The only thing was I found it didnt last long after the IV was stopped but felt much better while I was having it by Drip.

Hope things get easier soon.

anniesmum · 11. Dec 2010, 13:55

Hi everyone - 3 days of steroid drip and i have to say not the best experience. Annie now really has enough of needles and pain. The Glucose pin prick test before and after has sent her over the edge on needles. We had the worse mtx injection episode today - bag of ice helped to numb the area but just so upsetting to see her so distressed. She is so tired and fed up with it all we cant seem to see any benefit of the drip yet. Hopefully it'll all start kicking in soon.

Thanks for all your messages - it really does make a difference, especially about the Embrel taking up to 3 months to work - I was under the impression it was a lot sooner than that. So fingers crossed and keep positive.

Off out tonight which after this week is hard - have to put the party frock and big Christmas smile on which tonight is tough. I am sure I will feel better when I get there.

)

Have a good weekend one and all.

dreamdaisy · 11. Dec 2010, 14:18

Oh your poor, poor girl, what a nightmare for her and you. I think they always say that the arthritis drugs can take up to three months to have an effect, but as for how true that is I don't know. The anti TNFs are always given the big-build up by the docs but they are not always the wonder drugs they purport to be. I hope the steroids do have an effect - but even they can be contrary. I can cope with this, I am an aging grown-up and it comes with the territory, but the iniquity of this rubbish being forced on the little ones . . . words fail me, and believe me, that's rare! Try to enjoy your party - you need a break from it all and this might just be it. DD

illihor · 13. Dec 2010, 12:43

Oh hun hugs it's so hard seeing them like this and I know what you mean about needles and children. Kayleigh is terrible although just starting to be good with mtx and enbrel.

As someone else has said it wasn't as quick for Kayleigh as the dr's made out for enbrel to kick in and they gave her steroids to help cover the period as well. This has worked for us and took about 6 weeks for the combo to fully work now we've just missed a week of both injections and boy have i noticed a difference already

I hope she's comfortable over christmas and not in too much pain hugs.

Michelle xxx

anniesmum · 14. Dec 2010, 13:32

Well, I can breath again - the steroids have now kicked in and I have a smiley, happy Annie back.
We have just seen her in the Christmas play - she was a little old lady - the irony of this didn't pass me by as she has often walked like an old lady this last year.

However, she was well enough to be there and loved every minute of it. We were obviously very proud and typically I had a tear in my eye - such an emotional wreck these days!!

Need to go and decorate Christmas tree - excitement levels are very high here!! The difference to last week - I never know wether I am coming or going on this emotional roller coaster of Arthritis.

Thank you once again for all your support - really appreciated. x:rudolf

PS - party was good, worth the effort to go

dreamdaisy · 15. Dec 2010, 02:24

Oh that is good news! I am glad Annie is back on track and that the steroids have had an effect (they are temperamental beasts, sometimes they will and sometimes they won't!) and I am pleased to hear that the party went well - you need a break from it all - and a guilt-free one to boot. Take care, both of you. DD

anniesmum · 21. Dec 2010, 15:33

Just a little update - like the lovely and reassuring DD warned (thank you for that) the infusion hasn't given Annie her bounce back. She is okish but far from where she should be. We will back to see her consultant in January who has been fantastic and really supportive. We have another set of drugs up our sleeve if by mid -jan her mtx/embrel combo hasn't worked. Will keep you posted as hopefully we wont get to the next rung on the treatment ladder.

In the meantime Christmas fever is wild in my house with the three girls almost bursting that there only 4 days to go.....yes, only 4 days!!!!!

dreamdaisy · 21. Dec 2010, 16:57

Oh dear, blasted steroids, who'd 'ave 'em? Well, I guess OK-ish is better than not being better at all - I have had to up my pred just to get thro the days, it's now 17.5 mg and even that ain't cutting the mustard. It's a rotten roundabout we ride, yes? Hopefully the fun and excitement of Christmas will distract her enough from everything else and she will have a whale of a time. I wish you all well. DD

PS One thing I have learned with this malarkey - there are no 'shoulds'. One takes what one can get, and one gets on with it all as best one can. It is the hardest thing, I think, that the meds sometimes just do not suit or do not work.

Annie Update - steroid drip

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