Methotrexate not working - moving to Embrel

radders

This is a bit of a cry for help and experience if anyone’s child has been on methotrexate successfully then it stopped working and they moved over to Embrel.
My daughter, Betty, is 6 years old and was first diagnosed with JIA at 18 months old.
After steroids, naproxen and joint injections she went on to methotrexate very successfully – she was running around with her friends by her second birthday. All went extremely well for her with the condition; except for her growing intolerance to having injections and blood tests. When the rheumo doctor suggested that she could come off the mtx when she was 5¼ years we leapt at it.
That was in October, up to January all seemed fine but then disease started returning – we were seen by Rheumo clinic in March – Betty (now 5¾ approx years old) was prescribed mtx in tablet form. Unfortunately, all did not go well with her taking the medication, in fact we were lucky to get one out of three tablets down her per week, she’s relying on naproxen more and more, friendships, school and normal little girl stuff is all getting a bit hard.
I started the ball rolling to go back to local clinic to get mtx administered via injection but by 19 April we were back at emergency clinic at main hospital. Betty was admitted for three days of steroids via a drip and two weeks physiotherapy, due to general health and state of joints. At the end of this she’s back on 10mg mtx administered via injection, and 20mg prednisolene daily dropping down to 5mg over two months – I must admit I’m expecting to get my little girl back with 12 weeks as we’d experienced previously.
I returned to Rheumo clinic within 6 weeks, the methotrexate wasn’t working so well. Doctor is now proposing Embrel as solution. I’m accepting of this but want doctor to double check whether mtx dose is correct. Figures now show that she should be on 12.5mg – this instruction passed to local clinic immediately. Unfortunately, for whatever reason, local clinic continue to administer 10mg. I hold back on starting Embrel (rightly or wrongly) as I want to give mtx a chance to work as well as it did previously.
Which brings us nearly up to date – Betty had steroid joint injections under general last Thursday – they had to do 8 joints – my poor little girl is riddled with it. Also, at the same time, had blood test and very first dose of methotrexate at 12.5mg. (Almost 8 weeks after it was prescribed.)
Phone call to me from Doctor speaking on behalf of her consultant last Friday – her blood results show her ESR is through the roof at 70. She must start with Embrel without delay.
I accept this and will support the doctors and my daughter with this – I just can’t let go of the fact that if she’d been getting the right dose of mtx from July we might not be here now.
In general, she has only just started tolerating having injections again, due to a lot of support from the super play specialists and the lovely nurses who administer it at both of the hospitals. Now she has got to have two more a week to deal with – and not even at the clinic where the methotrexate is given – we’ve got to the children’s ward at the same hospital – more upheaval and new stuff to deal with. One will be done on her methotrexate day (Thursday) the other is on a Monday.
All of this is fine and we will do whatever it takes to get her back to normal, but what if the dose of mtx is the key and when that is correct she won’t need the Embrel. How will they know? Will she have to continue having the extra drugs administered just in case plus dealing with the stresses and strains of having the injection and the extra 1½hr round trip to our local hospital to cope with.
I will speak to the medical team about the how long they expect her to be on the Embrel and at what point she can come off it. But if anyone has had a similar experience I’d love to hear how it went.
As a footnote, am going through the motions of involving the SENCO at her school, wondered if anyone’s child had been statemented and their experience with the process. School and headmaster are all very supportive so far.
Phew!
Thanks for reading,
Kath

dreamdaisy

I don't know what to say: I read your post earlier today. I'm 51, with no children, I have had experience of meth and enbrel but I cannot help in anyway. In am so sorry radders, there are parents around who do have a better knowledge of all this, they will answer in time, I am sure. I am thinking of you - have indeed thought of you off and on all afternoon, if that's worth anything. DD

illihor

Oh hun hugs. I agree with you about giving mtx at the correct dose time to kick in. My daughter who is 4 (5 end of november) has been on 10mg mtx since January and we are now being put on Enbrel same as you. However we don't have to go hospitals for the injections. They are done here at home with a paed community nurse who comes out to do it. She will only be having the one injection of Enbrel as her weight dictates she's to little to have two doses so it's done as one and on the same day as her MTX injection. She also doesn't cope with injections well at all.

I have done a rather lengthy reply in a back to school post that has recently been posted about a meeting with school I've just had might be worth a read of that. They won't do a statement for Kayleigh unless she needs the equivalent of 6 mornings a week help. At the moment we have a running around (ok only in short bursts) little girl something this time last year was totally beyond her.

I'm still trying to get my head around the idea of her starting Enbrel, especially after receiving the pack from bupa.

I hope you manage to get everything sorted for her it's so horrible to watch them in pain hugs

Michelle xxx

radders

Many thanks for your responses, they mean a lot.

Have got involved with general home stuff since posting - will spend some time tomorrow evening having a look through previous posts.

Best wishes
Kath

dreamdaisy

Morning radders, I hope you are all OK today. Thinking of you. DD

radders

dreamdaisy wrote:

Morning radders, I hope you are all OK today. Thinking of you. DD

Good morning DD
Thanks for thoughts - have just got back from meeting my friend for coffee - we both ended up having a bit of a weep over the trials and tribulations facing our children. The tears seem to be coming so easily at the moment...

Am off with Betty to clinic at local hospital for mtx and first embrel dose after school today - let's hope this is the start of something better for her.

Best wishes, hope the sun is shining on you - it is here.
Kath

PS Just reflecting on my morning - Betty fairly whizzed up to school on her scooter this morning with hardly a request for help - things aren't all bad.

dreamdaisy

Sometimes it's difficult to spot the good bits thro the haze of the bad bits. Keep an eye out for them - there may be more than you realise! DD

anniesmum

Hi Kathy,
I was just about to post a rather similar message. like you, feeling rather low myself today - Arthritis is so determined isn't it. Looks like poor Annie may need more that just mtx. We are on week 12 of 12.5mg and she is also 6. Started on 10mg for 4 weeks..She is slowly meant to be coming off the prednislone - we are down from 10mg to alternative days of 7.5mg and 5mg and it does not seem enough. Spoke to our fantastic Rheumy today and and we are upping the brufen and if no better then will go and see him next week with a view to joint injections and maybe chat about other chemicals. I dont even know what the stuff beginning with e is but obviously it is used quite commonly as I've seen it on a few postings. I knew it was rumbling away but bless her she limped badly out of school today and went to bed with a hot water bottle because of back pain, writs, knee and a new one are the toes. So fustrating and I feel anxious about her future and what's round the corner. Annie had Systemic JIA and I am so scared she will get the rashes and temperatures back if we dont get ontop of this and it will be down hill if she does.

radders

Hi Annie's Mum

Where to start, I've typed and deleted about 4 times now. I read your post with my OH (Mike) last night when I got back from babysitting for my friend. Started to reply, then stopped, thinking I couldn't get over what I wanted to say in a few lines at the end of the evening. Have walked kids to school, now have a bit of time to myself.

Systemic - that's so awful for Annie - Mike had to tell me about it, then I read up more online. (I always stop taking in the information after I've got to Extended Oligo JIA with micrognathia).

I'm so sorry, but I really can't give this the time it needs and deserves at the moment, to you Annie's mum or to Michelle with Kayleigh.

I know it's going to sound corny but I start to think of you both with your little girls and I physically can feel your pain and anguish and what you must be going through -

Will be in touch again,

Kath

PS Betty had first Embrel last night, all went well - she's a complete star - a bit of resistance then just deals with it - Leading up to the jab the last few weeks had felt like we had to cross a barrier - none of that nonsense in Betty's head - In fact she had such a good time at the Children's ward she made a fuss about leaving. I was able to "bribe" her with the fact she could come back on Monday! I can't imagine that will last long though... we'll see.
Like DD says look out for the little things - they are there.

dreamdaisy

Hi anniesmum, I read you query about enbrel, I hope I can shed some light.

enbrel is an anti-TNF treatment. It is a port of call when other (usually cheaper!) treatments have failed to give any lasting improvement. TNFs are at the cutting edge of meds for arthritis, and like all meds they have varying degrees of success.

It was discovered that those with RA produced high quantities of a protein called TNF in their bloodstreams and this is thought to contribute to the swelling, inflammation and resutling pain of RA. Anti TNF meds are designed to inhibit the production of this protein. The more usual ones are infliximab, enbrel and humira. Rituximab is another and there is a new member of the gang whose name escapes me at the mo. Some are administered by infusion, some by injection.

I think I have all my facts straight: if I haven't I apologise.

Thinking of you, radders, andylambs, illihor and lare. I hope all your children, and you, have a good day today. Keep your collective eyes open for the good bits! DD

anniesmum

Hi all - just a quick note to say thank you for all responses. You can feel quite isolated because however caring friends and family are, the length of time this is going on I don't want to be the grim reeper going on about it everywhere I go. Once again I have fingers crossed that a higher dose of brufen may work. Will let you know and like you Radders no time this evening after taxi- ing older kids about.
Also thank you DD for the medical information - good to go into these things fully loaded with info.

lare73

hi all, firstly can i just say thank to dd, you have been very kind to me since i arrived here, and its obvious you are of a caring nature to all of us, even though you are suffering yourself.

to the others posters, hope your all well today, mines rubbish but tomorrow may be a good day .. being a parent to a JA child is heartbreaking, but, how resilient are they ... i am still amazed at how they cope, put lots of grown ups to shame

take care
clare x

radders

Hi all,
I've resorted to a book that I got given early on in Betty's battle, I've almost finished re-reading it, and again I've found it very useful in helping me to deal with the JIA information and emotion overload. I wondered if you'd seen/read it... there is a link to get a free copy on this website, its called Kids with Arthritis - A Guide for Families. I would recommend it.

Hope all is going well for you and children.

Betty seems quite well overall - knees still feel all lovely and cool and knobbly not hot and swollen (I never thought I'd love the knees that she inherited from her dad so much!) I can only assume the mtx and enbrel must be doing their jobs. She's having some rotten mood swings though - I can't really say whether it's her nature (as in slightly over the top "normal" 6 year old stuff) or medication.

Thanks DD for clear explanation of enbrel, much appreciated. Hope you're having a good day.

Best wishes

Kath
PS Betty having MRI scan next week - they're suspicious of her jaw.

dreamdaisy

Hello radders and thank you. I wish I was having a good day, but truth be told I ain't! I am, however, a grown up and I can manage (I so need an emoticon of a crying woman now!) I have reduced my pred to 10mg and the pain has risen accordingly. Nice idea, lousy outcome, that's PA for you. Never mind. I am thinking of you and Betty, anniesmum and Annie and lare and Tom. It's a big week for the last four - I hope all is as OK as it can be with Betty. DD

lare73

hi all

sorry to hear your having a pants day dd

and thank you for your kind thoughts and words.
i dont think it matters how old you are, pain is pain. hot bath and curling up in front of a warm fire is prescribed, hope you feel better soon.

c x

radders

lare73 wrote:

hi all

sorry to hear your having a pants day dd

and thank you for your kind thoughts and words.
i dont think it matters how old you are, pain is pain. hot bath and curling up in front of a warm fire is prescribed, hope you feel better soon.

c x

Hi DD I'm sad to hear you're day isn't so good - I second what Clare said.

Kath xx

dreamdaisy

Thank you both, it is very kind of you to think of me. DD

radders

Thanks to everyone for support and good wishes, I appreciated it more than I could ever express and you will ever know, I wish I'd got involved here years ago.

Betty had third enbrel injection on Thursday - it seems to be doing the trick - we're getting her back. She was literally begging her Daddy to take her out for a walk on Friday evening so she could push her "new" (from charity shop) dolls buggy - Mike said he had trouble keeping up with her.

No immediately visible side effects - in fact, appetite seems to have improved.

She's tolerating having the injection too, play specialist is great - really useful - Betty loves to see Lisa. Also nurses at Thursday clinic are prepared to administer injection so hopefully no more trooping up to the ward after mtx injection.

Were at GOSH on Friday to have eyes checked - all fine there, no swelling, big relief.

We're back there next Tuesday for MRI scan - they want to check her jaw. Another new experience for Betty - they've directed me to show her a video on YouTube about the experience - I believe it's crucial that she lies absolutely still so I've bribed her with a promise to visit the hospital shop after the scan...

I keep thinking of the words of the very first Rheumo consultant that we saw - Dr Hasson - he told us to two very relieved but anxious parents of an 18 month old girl with JIA - "you've found the right place, we will make her better, and we don't accept anything less than total recovery/mobility" or words to that effect. His words have been proved right for us twice now.

illihor

Awww that's fantastic well done it's great when you see them doing something for the first time since being ill it's like watching them take first steps for the very first time and brings tears to my eyes.

omg I can't believe she's having an MRI while awake. you'll have to warn her how noisy it is and they have to lay on the bed and go in the dark tunnel. Kayleigh is 4 and had two MRI's both been under GA in fact there were others at our local hospital even a 10 year old was having a GA as they know they don't stay still long enough. Are they doing the colour dye as well? Only ask as Kayleigh has had her jaw looked at under MRI and they do a scan first then inject a dye into blood then a colour contrast scan in the MRI and this is what showed her arthritis in both jaw and neck (the first one they failed to do the colour contrast and they couldn't clearly see). The actual scan took 30 mins but she also had her hips done. Good luck anyway but just to warn you it's pretty scary for them and very very noisy, my husband has had two and this is what he says. I know for adults they let you bring in a CD to play your own music have they mentioned this to you?

Good luck and hopefully it will help clafiy some problems (I know it did for my little girl as they understand where it actually is now)

Michelle xxx

radders

Hi Michelle. Thanks for your experience of MRI scans - Betty and I have watched the GOSH Youtube video of child having MRI scan - I explained that she could have sedation - likening it to when she had her GA for joint injections - but she's decided that she would prefer not to be sedated.

She's desperate for a Jellycat Cuddly animal from the hospital shop though (and I've brought in a no more cuddlies rule - we are drowning under them!) - and if she'll get around it by staying still for half an hour - then she'll do it.

Best wishes
Kath x

andylambs

Good luck with the MRI. I know Betty will do it. Philippa managed to stay still during an MRI (she's 6 too) with a bribe of some new Geronimo Stilton books :-)

Philippa's was done in Seattle Children's Hospital and they had a series of mirrors set up so she could see me sitting at the end of the machine, I expect they'll have something similar for Betty.

radders

Thanks for that Andy, must admit I think she'll be ok, she seems to take it all in her stride.

I'm still being as scatty as ever... had got it in my head that MRI scan was yesterday (Tuesday) but when I checked my calender on Sunday evening saw that it didn't match the appointment letter. It's all worked out fine though, we're off up to GOSH tomorrow and hopefully we can get the ward to administer mtx and enbrel, rather than trekking up to clinic at local hospital.

Hope all going well in the week for forum users and making the most of this last day of summer.

Best wishes
Kath

dreamdaisy

Best wishes for tomorrow: it is tricky trying to keep track of all the appointments - don't fret, we all get it wrong from time to time. Update us when you can, and I hope she finds it OK. It is a daunting thing, but it doesn't hurt - well, the machine doesn't but her joints might ache after from keeping still - mine do! DD

anniesmum

Kath - have already written to you on another thread - getting very confused with all our lovely postings. But just wanted to say that I didn't realise Betty off for MRI tomorrow - I will be thinking of you both. Hope the results are good and I am so pleased she is responding well to the new medicines. Annie has had one MRI and she did take it in her stride. I was at the end rubbing her feet so she could see me - looking fabulous in hair net and ear defenders, I will add!! Lucy
Ps - great minds - Annie got the jelly cat cuddly dalmation for her hospital achievements.

radders

anniesmum wrote:

Kath - have already written to you on another thread - getting very confused with all our lovely postings. But just wanted to say that I didn't realise Betty off for MRI tomorrow - I will be thinking of you both. Hope the results are good and I am so pleased she is responding well to the new medicines. Annie has had one MRI and she did take it in her stride. I was at the end rubbing her feet so she could see me - looking fabulous in hair net and ear defenders, I will add!! Lucy
Ps - great minds - Annie got the jelly cat cuddly dalmation for her hospital achievements.

Lucy
Very quick post as have been doing OH's accounts and trying to get our evening meal on the table. Had to laugh at Annie getting a Jellycat - will let you know which one Bet goes for.


Be back on soon
Kath x

PS DD I read your post on the Info pack thread earlier this evening on how you are - I can't even start to imagine how you must feel - thanks for posting it up. Can I send you a hug....

anniesmum

Kath - can't see a posting today - just to say I hope today ok and been wondering how you and the brave Betty have got along.
p.s. dalmation was named Spotty - Annie gets her orginality from me.