Is it down to cost or how server you have RA.

[shirlthegirl]

Hi everyone hope you are having a pain free day..........I know i had a excellent experience with my rehumy last week , But my brother has had RA for 20 years now, and has given me a list of meds he has been on in the past,

He mentioned that he was on mtx about 7 years ago and it never worked for him, He said he was then given Humira which worked for 3 years and now he is on Enbrel which he injects every two weeks,

I know that all meds work differently on different people, But he seems to think that i am being cheated out of a better drug like the one he is on, Also because we are family it will not work for me neither,

I know that a lot of you on this site have been though a lot (like my brother) with one drug or another and have lost the full use of a lot of limbs etc(, My brother is in a wheel chair now)

I know he is just showing how much he cares and doesn't want me to go though the same,

And i also know that a lot of drugs have changed a lot since he was diagnosed,

Not sure how much mtx has changed, but he wasn't given hydroxychloroquine with it at the time, I know you would all want the best for anyone with RA in your family,

NOW MY BIG QUESTIONS AT LAST....... I DO GO ON SOME TIMES,

Would you push to be put on the same drug?

Would you try the mtx drug out first?

Do you think it is down to the costing?

Is this drug only given to patient with serve RA?

Would you push your sister to go on the same drug as you?

Sorry I'm just getting a bit confused to know what to do for the best, as i am going to see my GP on Thursday, I do understand what he is saying, but it would just be nice to here want you all think on here, and what you would do.........

Thank you all for taking time to read this, Lots of hugs and Xxxx

[cathie]

I would try to find out what rationale they have for giving meds. Look at NICE guidelines, I live in Scotland where things are different, but when I was first diagnosed I was still in England and I was given dimards disease modifying drugs at first. They didn't make enough difference - this process took several months/years and I had to keep up pressure. Finally I was given anti tnf and that has made a lot of difference. But there are financial constraints, and I also think that being a person who keeps up the pressure will have an effect. I don't think they give anti tnf/ biologic meds first. Do you have a date for next meeting with consultant? Mtxate does work for many people I think. But if it doesn't then it can be combined with biologic treatment. Hope this makes sense and that you do well

Cathie

[shirlthegirl in reply to cathie]

Hi Cathie I've not received My follow up appointment yet, But have a appointment on Thursday To see my GP and start meds and to check my bloods and xrays,

Thanks for your answers, Take care XXX

[helixhelix in reply to shirlthegirl]

The GP can't prescribe the anti-tnf drugs anyway, only consultant rheumy's can do that. My GP won't actually change anything re my RA meds except the painkillers, and for anything to do with the RA she says I have to talk to consultant.

[shirlthegirl in reply to helixhelix]

It's really silly,they have taken so much away from our GPs these days,

I remember when i had my keyhole surgery on my knee last year, i had to see a triage, then a knee specialist, just to get a MRI scan, It took months, So if i have side affects with my meds, i have to wait until my next appointment to see the rhemy, It's not good is it x

[helixhelix]

The latest research seems to show that RA isn't a single disease that's the same for everyone, there are some variations between people. And that certainly does make sense when you read the different experiences people on this site have. So some of the meds work better for one person than another, and just because you are brother and sister it doesn't necessarily mean you're identical so what works best for him may not be the best for you, particularly as you are different sexes. So you may not have as severe an RA as it sounds like your brother has, and the earlier it gets treated the better the results so if your brother didn't get the drugs to start with then his RA could have taken hold more.

MTX is generally considered to be one of the best starter drugs for RA, and has been around a long time so there's a good track record. The biologic drugs (like anti-tnfs such as Humira and Enbrel) are newer, and they are more expensive (my MTX injections are £16.75 each, but the biologics are about £400 each). In England they don't give you the biologics until you're tried the cheaper drugs, and only if your disease is severe enough and there is an assessment process to get them.

I did go through a period when I was feeling resentful that I hadn't been allowed to have these new expensive drugs, but I finally came to believe that the important thing is what works for me and not how much it costs. I'm on MTX, Sulpha and Hydroxy which is working well, and I'm nearly back to "normal", so I've stopped nagging my rheumy about changing drugs. Also, it does seem that after a few years the drugs can stop working for you. So I now feel that I'm keeping these other drugs in reserve for the moment than MTX stops being effective for me and if I try them all out too quickly then I'll have nothing left to try.

But the important thing is not to wait too long if a drug isn't working for you. This is just my opinion, but if I were you I'd start on MTX and see how you go. But if it doesn't seem to be making a difference after a couple of months then start pushing to be changed. good luck, Polly

[shirlthegirl in reply to helixhelix]

This makes a lot of sence Polly, knowing there will also be another drug out there is so important, Didnt look at it like that, thanks xx

[petalnumber2 in reply to helixhelix]

Helixhelix, you are a mind of useful information, and you are also very sensible in the way you think things through and then offer your thoughts up for all to take in. It's really helpful to me because I have been in a quandry this past six months or so and I'm sure shirlthegirl will have something to think on too.

[Shell1967]

Very good advice from polly shirl,they defintly don't try out the most expensive ones first,mtx is the first dmard most consultants use at first,that's what he told me,its tolerated well by most people and seems to be the most effective.give it a go,as polly said you don't want to try all of them at first as there will be nothing left to try.as you know I'm only on mtx 15mg a week for ten weeks now,I have seen a huge improvement,by no means pain free but less stiffness,soreness and pain,and don't take any painkillers at all.i walked round a shopping centre Saturday for 6hrs,something I would never have done before mtx plse believe me.your brother says cos it works for him means it wouldn't work for you,I don't think this is true.itsmupto the individual shirl,we are all so different.you are very lucky as been given hydroxy as well,I haven't,but I suppose my hospitals policy is to start on mtx and see how I go.i don't want loads of drugs in me if mtx does the trick by itself,but if imdont become pain free etc i will ask for something to combine with mtx.but I got told it can take up to 6 months for mtx to become fully effective and I'm only on week 10 so I'm going to carry on and see.my nurse told me when I go in dec if I'm still experiencing stiffness in fingers and shoulders she is going to up it and I'm going to ask abut hydroxy then.plse listen to your brilliant consultant,he seems lovely and will look after you shirl.dont listen to anything negative.your doing well so keep your spirits up !!!!!!! Love Michelle xx

[shirlthegirl in reply to Shell1967]

Hi Michelle i know i have mentioned this to you before,But it has just been playing on my mind a bit lately, I know i'm really lucky to of had a great consultant,

Its just nice to get other peoples few's It does make a lot of sense what Polly has said

That's why this site is so great.

Will chat soon take care xxx

[oldtimer]

My sister has developed RA recently and I've had it for nearly forty years. She is having different results with the drugs I have been on in the past, so although I think you probably share some of your genes, you may not share how you tolerate various drugs.

[Hidden]

Hi.

I went to see my consultant today, and asked if she could tell me more about my future treatment.

I am on MTX, Hydroxy, and Sulfas. I have had RA for exactly 20 years. I wanted to know if they are planning for me to go onto anti-TNFs soon.

She told me that my disease is not severe enough to qualify for the funding for antiTNF treatment, hence no need to do a DAS score etc.

She made her assessment from a series of X rays and from my blood results. I have to trust her judgement. My family have other opinions, but the doctor is the expert in the end.

I should be glad I am not "ill enough" I suppose.....

I think the point is that over time we can see how the drugs stabilise us, and the less heavy duty drugs the better. I suppose that each drug brings it's problems, and I am sure that the anti-TNFs will have their own risks and benefits too.

Incidentally, MTX by injection is so much better than by tablets. You can use less for the same effect.

[earthwitch]

Its definitely true that in the UK far fewer people get offered the expensive anti-tnf drugs than in the US, and that generally the guidelines for using them make you jump through a lot more hoops of trying other things first. Having said that though, for a lot of people DMARDs actually do give really good results once people are on the right combination, which may take some time to find out.

As Polly said though, don't put up with drugs that aren't working well enough for you or have too many bad effects, once you have given them an appropriate length of time. It does seem that you are more likely to get onto the anti-tnf drugs if you actively report back to rheumatologist what is happening with DMARDs and actively ask what next you can try.

As far as what works for other family members, I don't think thats particularly relevant. Everyone is different. The main thing is what works for you, and if you aren't getting the relief you think you should then push to try something else.

And yes, I think a lot of it is about cost, and while it makes sense to try cheap drugs first, it doesn't make sense to make you put up with inadequate treatment too long, because that just leads to more disability which is a huge cost to the country.

[_andy_]

hi shirl

the answer to your questions is all YES ,, from me ..

ive got AS and just going through all the anti tnf assessment stage ,, hopefully by xmas i will be started on the anti tnf treatment ,, with AS anti tnf is offered ,, more or less straight away . because all the DMARDS are not as effective on the condition ,, but with RA DMARDS work well , so anti tnf isnt offered at first....