Starting Enbrel ontop of Methetrexate

Shanedegs

Hi All,

I am new to this site and have found peoples experiences very supportive and informative.

My 8 year old daughter was diagnosed with ployarticular JIA in March 2010. She was immediately given oral steroid, and then steroid injections and started on Methetrexate.

Once full of steroid her symptoms pretty much vanished and she was back to her normal happy, active self.

Within two months her symptoms came back and she was put on another cause of oral steroids. By August 2010 she was booked in for a second course of steroid injections 21 in total. This yet again brought her bouncing back. It was decided that Methetrexate was not olding her condition so enbrel would be introduced. Due to the steroid injections her symptoms were much better so we decided to hold off on enbrel until her 3 month review in Jan 2011 just in case Methetrexate had started to work.

Just before Dec her symptoms started gradually coming back. We have just been to clinic and are definately going to start on Enbrel on top of Methetrexate. Has anyone got any experiences they can share as feel very concerned.

Many Thanks

Shane

dreamdaisy

Hello, it's nice to meet you. I am not a parent but I can understand your concern at your little girl having an anti TNF treatment alongside the meth, or vice versa.

Steroids do work very well for some, as you have found, but the effect is rarely long-lasting. Methotrexate on its own can also be effective, and longer-lasting than steroids but again sometimes it is not enough to fight the arthritis. The addition of enbrel will, hopefully, be enough for her to regain some better health, and stay better for longer. I know that there is at least one other child on enbrel, I hope the parent spots your post and answers.

It can take up to threee months before any benefit might be felt or noticed, but I sincerely hope it happens faster than that for your girl. Yes, there are risks associated with these meds - a powerful disease needs a powerful treatment, but I take the view that the possible benefit outweighs said risks: when on these meds one is very carefully monitored so any problem/reaction can be picked up early and dealt with. I wish you both well. Please let us know how she gets on. DD

andylamb

My daughter was on Methotrexate and she came off that to go on to Enbrel. I know that some people do use both consecutively but I have no experience of that.

The Enbrel for my daughter works fantastically. It is a real magic drug for us. We feel extremely fortunate that it does work so well. I know that not everyone is so fortunate. She has been totally flare free for over a year and is now a happy and healthy 7 year old. Her PE teacher told me she has totally caught up with the rest of her class and is actually doing better than a lot of them.

Enbrel does mean a weekly injection and a suppressed immune system. She caught chickenpox at the beginning of December and we spent a few days in hospital with her on an anti-viral drip. But given the alternative of the arthritis flaring and damaging her joints we'll go with the Enbrel any day.

Good luck, I hope it works just as well for your daughter,
Andy

Shanedegs

Andy,

Thanks so much for the response, it's really reassuring to hear from people that have already used these medicines.

Molly is going to be having two Enbrel injections and one Merhetrexate injection a week now, so fingers crossed we get a good result.

So glad your daughter is doing so well. Long may it continue.

Thanks again.

Shane

julie1

Hello

My daughter has just turned 11 and has psoriatic JIA - she has taken methotrexate since August 2009 when diagnosed, first by tablet and now by weekly injection. This is not controlling the JIA, she is currently on oral steroids and has had many joint injections, she just feels ill all the time and is struggling with daily life, just getting to school some days is a real problem for her. We are days away from her starting Enbrel and like you, are very concerned. I met a parent at a local Arthrisis Care Meeting, she really praised the drug and said it was the best treatment for her daughter. I hope it works for both our children. Good Luck let me know how your daughter goes on. xxxxxx,

Shanedegs wrote:

Hi All,

I am new to this site and have found peoples experiences very supportive and informative.

My 8 year old daughter was diagnosed with ployarticular JIA in March 2010. She was immediately given oral steroid, and then steroid injections and started on Methetrexate.

Once full of steroid her symptoms pretty much vanished and she was back to her normal happy, active self.

Within two months her symptoms came back and she was put on another cause of oral steroids. By August 2010 she was booked in for a second course of steroid injections 21 in total. This yet again brought her bouncing back. It was decided that Methetrexate was not olding her condition so enbrel would be introduced. Due to the steroid injections her symptoms were much better so we decided to hold off on enbrel until her 3 month review in Jan 2011 just in case Methetrexate had started to work.

Just before Dec her symptoms started gradually coming back. We have just been to clinic and are definately going to start on Enbrel on top of Methetrexate. Has anyone got any experiences they can share as feel very concerned.

Many Thanks

Shane

anniesmum

Hi Shane and welcome to the forum.
Firstly, I am sorry to hear about your daughters JIA - my daughter is 6 and was diagnosed in Jan 2010.
Annie is on oral steroids and has been on the mtx/embrel combo and I have to say I felt just like you, especially after reading about in on-line. It is awful having to put so many nasty chemicals into our childrens bodies. I got my head round it by realising that we had no choice as Annie had shown no improvement on just mtx injections. I also feel that our children's bodies are producing their own nasty chemicals that are giving them so much pain/discomfort that they can carry on with a normal life.
To reasssure you Annie had no side effects from the Embre injection apart from red marking around the injection site. It was also painless compared with the mtx injection.
For Annie it hasn't been the miracle that a lot people on this forum have reported (see my new posting) but I think this may be because Annie has the Systemic form of JIA.
I really hope it works for your daughter and you have a big fridge to hold all the meds - we have looked like a chemists these last months.
Take care of your self to, Shane - this is a difficult time for you to.
Lucy

cathhankin

i was taking enbrel and methotrexae together when i was 16. I hated the needles and even more so when i had to inject my self.
they do say that anti tnf and mtx work well together. it did for me to begin with, but it was as if my body became immune to it . I am currently on enbrel (once a week 50ml, injectable through a pen- may be worth asking about that- as i find it easier than the shringe) and leflunomide tablets and i am doing ok

I hope things work out for your daughter she really does appreciate everything you are doing for her. even if she may not say so x x x

radders

Hi Shane, welcome to the forum, glad you've joined, it was the best thing I did, there are a lot of very lovely, very supportive people here who really made a difference to me and my husband in our situation.
Our daughter, Betty 6.5 years, has extended- oligo JIA, was on mtx for years (have put the whole story on this forum about 4 mths back if of any interest) had to start on enbrel in first week of September 2010, after me fighting against it for a couple of months.

Have to say that did take 12 weeks but it's worked very well and Betty doing better than ever - she's caught up in school and her levels of fitness and general humour all seem to be back to normal.

Our only problem is the issue of having an injection 3 times a week. Betty hates it but we're sweetening it with bribery. She gets 50p an injection whatever, but if she has it without struggling or lashing out then I increase this to a £1. She saves the money until her 8 weekly blood test and if she has that without making a fuss she can choose where to spend her now considerable sum of money. The real object of desire for her and her friends is "Build a bear", so it's working out that she can go and buy a new outfit every couple of months, got to say it's doing the trick - still hates the injection but worth tolerating it for the reward.

Anyway, I'm digressing. Best wishes for the new medication - hope it works out very well for your daughter and for you.

Kath

illihor

Hello and Welcome,

Sorry I haven't responded sooner. My daughter is 5 and has both MTX and Enbrel. Like you she was given plenty of steroids and injections and we tried Methotrexate since January 2010 and it wasn't keeping it at bay at all. It was decided to put her on Enbrel and although I had my reservations and worries and did a post similar to yours at the time I can deffinately see the benefits of this drug.

My daughter had been on it since October and is still taking both medications via injection each week. They don't have any plans to take her off MTX in the near future either as we are finally in a good place. My daughter also has polyarticular although they are starting to say psoriatic now

I honestly believe that without this drug we wouldn't have the bouncy happy child we now have. I must admit I cried when she first went on the trampoline just before her 5th birthday such a small thing but made me realise just what she was missing out.

Good luck and I hope this works for your daughter as well as mine.

Michelle xxx

Scoobydoo

Hi Shane

My Son has polyarthritis too. He was on Methotrexate by tablet form - but it made him so poorly and the stress of taking it made life pretty much unbearable for us all as a family. He went on to Methotrexate by injection which wasn't much better. Steroid injections always give us back just those few months without any problems and then it all comes creeping back. He was put on to Enbrel in August and up until December I really thought this was going to be the best medicine for him - side effects were so much better - no sickness and he could have the injection by auto pen. We got to December and it has come back but so much worse this time, he now has it in 21 joints. He's been put on oral steroids, but as yet they aren't making much difference. We are just waiting for steroid injections in the next few weeks. Unfortunately he has to go back on Methotrexate on top of the Enbrel too. He cried more about going back on Methotrexate than anything - I just dread that delivery arriving and the stress of it all. I just hope to god the side effects are not going to be like before.

I read these posts and I really don't feel alone anymore.

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