Biological treatment

[Montaha]

Hi good people i already wrote about my daughtet who is 11 years old with JIA she is taking Methotrexate injuction but she vomiting every time when she took .her dr.decided to change her midication to biological treatment any one has an idea about this midication???

[Mmrr]

I'm so sorry to hear about your daughter 11 years old is so young, but good news about moving to a biologic treatment soon. There are quite a few 'biologics' on offer now, and more becoming available every year. These drugs offer great opportunities to control RA, prevent joint damage and the side effects tend to be less troublesome too.

Do you know which one she will be starting on ?

[bubblyalex in reply to Mmrr]

Why aren’t more offered biologics straight away... Is it a cost thing?

[Mmrr in reply to bubblyalex]

Yes, most biologics in the UK cost in or around around £10,000 per year.

Methotrexate tabs under £50, methotrexate injections several hundred pounds per year depending on the dosage.

So biologics are very much more expensive.

[KittyJ in reply to bubblyalex]

Bubblyalex I think that’s a factor plus people are tried on other drugs first in case that’s all they need, better to be on the least drugs possible and all the risks that come with them 😊

[helixhelix in reply to bubblyalex]

It’s also about risks as well as costs. All drugs have pros and cons, and come with risks. Biologics have an increased risk of getting serious infections, and even simple things can turn nasty. They can also activate latent diseases like hepatitis and TB, and cause other nasty side effects in a few people.

When biologics first started being used it seemed that they would be magic for everyone. But now they have been around longer research is showing that people can do just as well on traditional DMARDs as biologics, and some people don’t respond to them at all. So it no change really from the trial and error approach to see what works best for you.

[Montaha in reply to helixhelix]

Some people said it is bettre than other drugs!!!!

[helixhelix in reply to Montaha]

The best drug is the one that works for you! (Or rather your daughter). It could be any of them so unfortunately she just has to try them. But biologics are generally very well tolerated and can work great - I am on one and Methotrexate.

Most of them the docs like you to take methotrexate as well to stop you building up antibodies that will make the drugs stop working. But there are some you can take by themselves so do ask the docs if they suggest that she has to keep taking MTX.

[AgedCrone in reply to helixhelix]

Actually in UK you have to have tried at least 2 Dmards....one of which being Mtx before funding for Biologics can be submitted.

It can be given without Mtx for adults, but I don’t know about children.

Also costs are coming down considerably with the introduction of Biosimilars which are proving to be really successful.

[helixhelix in reply to AgedCrone]

only 10% cheaper apparently! Which adds ups to big numbers, but even so makes me cross when people are forced to change. Annual UK bill for Humira is £400million according to NHS.

[AgedCrone in reply to helixhelix]

The price here differs on every Bio/Biosimilar.

I was speaking to the rheumatology pharmacist, & he said on average Truxima is 40% cheaper than Rituximab,& that can be improved on depending on how good a discount each health authority can negotiate,...presumably the more you buy the better the discount!

In fact if people keep abreast of the situation nobody can be forced to change. In my area we all received a letter saying if we had any doubts we should speak to the pharmacist....& quite a few people at my clinic remained on their original meds.

As with everything with this disease, you have to be proactive & state your case to get what you need/want.

[Reeceregan in reply to AgedCrone]

Same here in Aus. Have to have failed 2 before a biologic. I’m on to my second just today. MTX since November hasn’t worked, have added Plaquenil, if both of those together don’t do the job we add Humira. And yes, it’s because of the cost. I had no side effects at all on MTX, it just hasn’t worked. But couldn’t go onto a biologic next, have to fail a second drug. And it’s not good, because it’s Plaquenil (Hydroxychloroquine) and between Donald in the US and Clive here in Aus buying it all up as the “Covid Cure “ its very hard to get.

[AgedCrone in reply to Reeceregan]

Well you can take consolation that when prescribed on prescription under medical supervision Hydroxy has been in use for years perfectly safely.

Let’s hope it is successful for you,

[Vonnie10 in reply to Montaha]

No biological drugs don’t seem to work for me at all.

[Montaha in reply to Mmrr]

Thanks so much for writting tomorrow they will make some tests to decide which one and how many doses she will take,as you knew it is very expensive so dr. Wrote a letter to the goverment to get conformation from them.i will let you know which drug.

[Mmrr in reply to Montaha]

I hope all goes well

[Montaha in reply to Mmrr]

Thanks.

[Montaha in reply to Mmrr]

Thanks so much for writting tomorrow they will make some tests to decide which one and how many doses she will take,as you knew it is very expensive so dr. Wrote a letter to the goverment to get conformation from them.i will let you know which drug.

[Mmrr in reply to Montaha]

It's all about the best drug for the person but if methotrexate is making her vomit, then it is time to move on.

[bubblyalex]

I can’t help but I hope she is more comfortable soon.

[oldtimer]

If you go on to the NRAS website, the treatments pages give you lots of information about the large number of drugs available for biological treatments. Let us know if you have any questions about the one that they are suggesting, or for any experience from members.

[Montaha in reply to oldtimer]

Thanks.sur i will let you know.

[allanah]

I am delighted you replied as I was thinking about you. I'm so glad you spoke to your doctor like we said .

Im so glad she got biologics , they really help and you tend to get less side effects.

However you doctor needs to give you LOTS of advice and booklets on the drugs she is getting as they need follow up.and often have they told you , blood follow up tests ! Hope she doesnt mind them too much.

They really do have to explain to you and your daughter about it maybe is easier to pick up some infections and what to do . However they do help pain a lot.

Do go on the site nras.org.uk for lots more information, it's the national rheumatoid arthritis society , really good

Thanks for writing back and sending love to you both .

[Montaha in reply to allanah]

Thanks so so much allanah am really happy you and other people thinking about my daughter💕 the dr.decide to go to other drug because as i said before she is voniting friday night and Saturday .in fact i talked to my daughter she is so scare she said i prefer to be in same midication and vomit better than trying other one which i dont know what is .....

We told her its bad to vomit every week .she has no idea we are going to the hospital tomorrow we know she will be very angry because she hate hospital.they will make alergy test andbtook extry for her lung.thanks again

[allanah in reply to Montaha]

Tell the doctor how anxious she feels and have a list of questions you want the answer to as it's amazing how quickly the time goes. Let her talk her feelings out , that's important and ask them for a help/ contact number that you can get hold of them quickly if you need them . This is going to be her help for her life so it will be good she gets to meet and tell them her worries.

And no vomiting isnt good, she will become dehydrated and feel worse .

But the drugs will kick in and help her . Do go on nras.org.uk , they have a special section for JIA , kids form of arthritis. Good luck , if you get a chance let us know what doc says ?

[Montaha in reply to allanah]

Thanks allanah tomorrow i will let all of you what the Dr say.

[Mmrr in reply to Montaha]

Generally speaking, biologics do not cause the vomiting and gut upsets the way methotrexate does, but we are all different. There are of course other side effects, all meds have side effects.

Please make sure her Dr understands her apprehensions

[Montaha in reply to Mmrr]

Sure i will ask her Dr.and let you know what she will say.

[MagsLough in reply to allanah]

Hopefully once she settles there will be fewer tests than are required than being on methotrexate, my biologic (benepali) doesn’t require blood tests although I don’t know about other ones.

[allanah in reply to MagsLough]

I do monthly ...

[Gemma_RA]

I would go on to a biological drug

I wish I was offered this when I was 11!!

[Olderguy]

Hello Montaha

My eldest granddaughter was diagnosed with Bechet’s. It’s a rare, complex, lifelong condition. As there is no direct diagnosis, it is determined by discounting other conditions and so, after six years of intrusive tests, she has her diagnosis. She has recently celebrated her 14th birthday and has been on adalimumab bio for just under a year. It has transformed her life! Ironically, I’ve been prescribed the same medication for PsA, along with other bios along the way. All biological meds are expensive and sometimes reluctantly prescribed. I only have positives in respect of their efficacy and I hope your daughter’s experience mirrors that of my granddaughter. Good luck & best wishes.

[Montaha in reply to Olderguy]

Thanks dear Olderguy .God Bless you and your grandaughter.

[Summerrain14]

Hi Montaha, so nice to hear that your daughter’s doctor will be changing her medication.

Thanks so much for taking the time to give us an update too. I haven’t anything useful to add I’m afraid but just wanted to say I’ll be thinking of you and your daughter and do drop by and let us know how you both are when you can. x

[Montaha in reply to Summerrain14]

Thanks Summerrain .you are so kind .

[Scootergirl1]

Hi, after trying methotrexate for some time my son was prescribed Enbrel, he still had to take a low dose of methotrexate but it certainly controlled his arthritis. I hope your daughter gets the same result from biologics.

[Montaha]

Dear good people as i promised to let you know about what happend with my daughter doctor.i just forgot to mention my girl JIA is Polyarticular .today we meet the Dr.she decided to change the methotraxet to biological one because she is vomiting ,but today we suprised when the dr examin her she said her knee swalling is still No changes then she said how many injuction she took 6!!!we said No 18 injuctions the she said oh methotraxet does not help her!!!!she even dont know how many injuction we gave her!!dr. Said we have to go to other option which is( Amgevita) so they injucted her under the skin to check if she has allergy before start with it.so Monday we will go to the hospital they will see the result and will check her lung.

This all what happend today.

Thanks for your support.