Where can i find statistics on the effects of RA treatment drugs on patients over the last 20 years?

[emmaf]

Does anybody know where i can find some general statistics on the effectiveness (or not) of the different drugs on RA patients over the last 20 years or so assuming that they exist. I keep coming across conflicting percentages on the effectiveness of Dmards etc in controlling RA that i would like to see for myself. A Canadian website mentions that over 50% of the drugs are non-effective whereas a Consultant in the UK says that over 75% of patients live 'normal' lives. I understand that everyone has a different response to the different drugs but as a recently diagnosed RA sufferer, i would like to get a better idea of the odds. Any help would be greatly appreciated.

[Beth58]

No idea..... but the Department for Health or NICE might be a good place to start.

As you say there's so many conflicting reports from around the world it's really difficult to disseminate the information.

Good luck

Beth xx

[emmaf]

Thanks Beth,

Will have a look with them. Will post a link if i find anything.

All the best

Emma

[Hidden]

You could ask the NRAS helpline people to advise you on where to look - also Arthritis Research? I find this site has the most up to date info on re DMARDs and which combinations seem to be the most effective. But would be interested to learn what you find out. Tilda x

[emmaf in reply to Hidden]

Hello Tilda,

Thanks for your response. I rang them months ago about this but got no information on overall statistics. However, based on your suggestion i decided to retry today - the person i talked with in the NRAS couldn't help me and didn't seem to think that anyone else there could either. I have emailed the Arthritis Research website so will let you know if i get a response from them. Many thanks Emma

[helixhelix]

I've found that the Journal of Rheumatology and The Lancet have research papers on these sorts of subjects if you can get hold of them. However, you do have to read these things in context as many of the drugs have only been developed in the past 20or so years, and things are changing all the time. So studies that are based on past experience may not be relevant now as things will have moved on. There are also big differences between the major long terms studies, and smaller pieces of research that might be looking at a particular sample of patients. As Beth says,NICE also produce the various bits of guidance to the medical world which set out some of the research that they've used to base their decisions on whether or not to fund one drug or another, and the various treatments strategies. They say that everything they do is evidence based, so you have to believe that's true. But all of these aren't exactly light reading, and pretty dull. And quite often rather incredibly badly written, but I guess research scientists aren't renowned for literature.

However, I would also suggest that you think about why you think it important to know as it can drive you a bit nuts, and you start seeing gremlins behind every suggestion your doc makes and get a bit neurotic about every sniffle. And you do need to build up a good relationship with your rheumy. After all the important thing is how you react to the different meds, rather than what the statistics say so knowing what they are doesn't actually make a difference. There's also such a huge spectrum of response that reading doesn't really capture. For example, I'm luck enough to be in majority that does very well - so do most of what i want, when i want now. but that doesn't stop me having some really bad times now and then, even tho' statistically I imaginei'd probably considered to be in the "good" group.

My advice would be to give yourself the best chance possible by spending time on looking after yourself first. If you are recently diagnosed, and at an early stage, then the probabilities are very good for you already with the improved treatments that are available. And there are new ones being developed all the time, so things will get even better. Obviously your choice, but do think about priorities. And yes, I have read quite a lot and still do, but that's my bookwormy nature and I also did lots of stuff to improve my way of living alongside. And I'd already started to respond well to the drugs, so was able to control the worry some of the stuff i read created. Good luck. Polly

[emmaf in reply to helixhelix]

Hello Polly,

Many thanks for your reply - it is much appreciated. I understand your point of view regarding focusing on feeling better and not on the details of statistics which might be irrelevant to me - this is sound advice. However, i also think that it is reasonable to want to get an overview of what is happening to the majority of RA sufferers over their lives so as not to perhaps over worry but not underestimate the impact either. I am currently taking a 'leap of faith' now and just taking the drugs suggested (which don't seem to be helping yet) but i am also very sceptical about the effects of drugs on the body long term and having some insights would be helpful to me. I understand that there can't be any long term research done yet on the effects of the new drugs but there should be information on the older ones at least i.e do the take 5-10 years off your life?, do they cause heart related diseases etc

It is really good to hear you say that you can for the most part live a 'normal life' - nice to see that it's potentially not all doom and gloom.

Many thanks again for your response. All the best Emma

[helixhelix in reply to emmaf]

As far as I understand it, it's the underlying RA that potentially affects lifespan via increased heart related disease - not the drugs - as it's uncontrolled inflammation that causes the problems. The drugs cause other problems of infection and gastric issues. NRAS have a general article on this, or more techie one is at

nrls.npsa.nhs.uk/EasySiteWe...

I read loads, so would be totally hypocritical to say you shouldn't but just wanted to warn you that particularly to start with I found it made me a bit neurotic. But then it did make me pay more attention to other aspects of my life, so no longer that much overweight, blood pressure and cholesterol now in order, and I also exercise more. So the positive has been that if it wasn't for this pesky disease I'm in a better condition than I've been for years!

And again it's a personal choice whether or not to take the drugs, but do also look up what life used to be life for RA sufferers before they existed. Not nice. P

[emmaf in reply to helixhelix]

Cheers, thanks for this information. Yes, it looks like life before the more recent drugs in the 80's had a pretty grim outlook and for that reason, i decided to take medication a few months ago - it is early days for me. I found it very useful to go to a few of the local NRAS support group meetings/ lectures where i met other people in various stage of the disease and was sufficently frightened of the effects of not taking the drugs can have on the body. (Most people's deformaties that i met had happened prior to medication.) Yes also to it having an ironically positive affect in that i am trying to look after myself more in general with food, excerise etc All the best Emma

[helixhelix in reply to emmaf]

Oh and I forgot to add the link to the NICE guidance which lists out all the evidence they assessed. ... I'm not sure I ever managed to read all the way through without falling asleep tho'!

nrls.npsa.nhs.uk/EasySiteWe...

[oldtimer]

cochranelibrary.com gives a discussion of the relative value of the research papers about various subjects. If you search for cochrane library and rheumatoid arthritis you will find it.

I think there were about 57 about biologics and 1 about steroids last time I looked. The cochrane library was set up to evaluate evidence, so is very useful for non-specialists to read what specialists think about the quality of the evidence for drugs.

You can read the papers without having to sign up, but it is fairly heavy going!

And often they seem to conclude that the evidence is inconclusive!

[emmaf in reply to oldtimer]

Hello 'oldtimer',

Many thanks for the tip - i have had a quick look at this website and it seems impressive so will certainly investigate it further.

Regards Emma

[emmaf]

Many thanks for the help to all of you.

So far i have had a look at the Nice Rheumatoid Arthritis national clinical guildlines - not much help there that i could decipher. I suspect that all of these reports will be impossible to digest as a non medical person.

However i did come across these 2 youtube lectures - (links below). They are not conclusive in their figures by any means but i think it gives a good general history of the medical industry's approach to treating RA since the 1930's to a few years ago and some statistics/ facts that are really very interesting (although based on very small numbers). On the first link, if interested, it gets into mentioning surveys after 11.50 second into it. I think it worth watching both of them. It mentions the importance of aggresive early treatment (nothing new there), that positive outcomes only started in the 1980's with the use of Metatrexate, that the more recent drugs, (which seems to really help patients) are too new to know what the long term potential damage may be and that RA patients seem to suffer from heart related problems in older age and have a slightly higher death rate than the average. I don't know how accurate they are but at least are easy to digest it. It doesn't mention the Sulfasalazine that i am on so need to look into this a bit more.This may be enough for me to get a feel for the future possible outcomes but if anyone comes across anything else, it would be great to hear of it.

Many thanks

Emma

youtube.com/watch?v=djZfEi-...(Not working as expected?)

youtube.com/watch?v=bjzMylQ...(Not working as expected?)

[Hidden]

Thanks Emma it should be interesting to listen but will have to wait because I'm in the midst of a sickness that is as bad as any sick bug I've ever had but is caused, the locum GP thinks, by Methotrexate. He's from NZ and I got the distinct impression that when I said I felt poisoned he felt that was exactly what these drugs are - poison. So I will watch with great interest as you do your perusing and will contribute when I've stopped feeling as if i've sailed on the choppiest sea with morning sickness and gastrointeritis.

Sulpha is one of the older more tried and tested DMARDs - not as potentially toxic as MTX nor quite as effective for RA, and the one my GP put me on while I was waiting the long wait to be seen by a rheumy. Unfortunately I had an adverse reaction to it so couldn't carry on. Tilda xx

[emmaf in reply to Hidden]

Thanks Tilda for that - very interesting. I see that Arthritis Research have some very interesting research projects going on at the moment with results out in a year or two for some of them so who knows what's around the corner with potentially less toxic drugs. We can hope can't we. Very sorry to hear you're so ill and I hope that you start to feel a lot better very soon. Sounds vile. Can you contact your specialist nurse about it? Best wishes Emma

[Hidden]

Thanks so much for posting these YouTube links on here Emma. I've been referring newly diagnosed people to them and to your post. His talks helped me to take in better what my rheumy was saying to me and how he diagnosed my RA and why he put me on Methotrexate straight away. Watching them also helped my husband to understand everything better and to be more sympathetic about why I am actually taking these powerful drugs. I think previously to watching these we both felt that the drugs might be too aggressive to what was warranted for me but not so at all now.

I feel relieved that my RA is being treated so aggressively at this early stage now and having seen his diagrams of the hand and explanation of how RA differs from OA and other types of arthritis I have come out of denial about having it to begin with! It is a little bit like accepting a bereavement I believe. You can think you've come to terms properly and then wake up a fee days later and find you haven't at all! Tilda x

[emmaf]

Hi Tilda,

That's really great that the YouTube lectures have helped out. It is shocking how quickly the disease can take hold. The 2 lectures have helped me to get a better grasp on this disease too but I need to find out now why i am not on Methotraxate.

Perhaps the Arthritis Research or NRAS should create their own brief 'overview' lecture on RA and on the history of treatments and effects to explain in more detail why they suggest the different drugs. Their sites are really good particularly the videos from the Arthritis Research site from sufferers describing their journey and the consultant explaining the drugs but i would like still deeper levels of information.

I spoke with a volunteer over the phone this week from the NRAS who has suffered for over 10 years. I did this because i wanted to speak with someone who was coping with the disease as i was getting a bit overwhelmed by seeing so many people suffering with it online. I found it to be a very positive thing to do. She listed out her journey with the drugs, the impact it had on her and said that although you're life won't be the same with RA, that doesn't automatically mean that it will be worse. So on that note, best of luck with things. Emma

[emmaf in reply to emmaf]

Incase this is of interest, it is a podcast (1 hour) by Michael Weisman around the same time as his lecture above. He replies to phone in questions and i found it good to listen to - nothing extraordinary but lots of little bits of good advice for those newly diagnosed. Regards Emma

everydayhealth.com/rheumato...

[Hidden]

Thanks Emma for youtube lectures & Tilda for referring to them in another thread that lead me here.

Really good stuff - especially convincing about need for early aggressive treatment and for combination drug treatment. Verdict on Biologics obviously not quite so positive as they are still more of an unknown quantity than are the Dmards. But I'm wondering how many people in the UK do get offered Biologics in combo with Dmards quite early? I thought the NICE guidelines specified that patients had to have 'tried' 2 Dmards before getting Biologics? And now I'm wondering what 'tried' means.

Glad I watched this with my husband, tho' as I actually did find it quite upsetting. Like Tilda, I found that it made my denial harder to sustain! And it contains some harsh truths e.g. life expectancy and the heart disease connection that I've heard time and again but somehow Weisman makes them clearer. But if I have to get a bit upset in order to come to terms with reality & take control then so be it.

All the best, Christina

[helixhelix in reply to Hidden]

Hi Christina,

Yes England isn't that good re prescribing biologics see the attached reports. Some areas are more open to what "tried" means than others, but the theory is that you should have tried them for six months on a proper dose and have not had sufficient improvement in symptoms. But the life expectancy thing is changing fast I think, and not just with biologics, so I really wouldn't let that get to you. The docs are much more alert to keepng an eye on possible problems and chances are that you'll have no different a life expectancy than you had before, especially if you watch your weight, take exercise and so on..

nras.org.uk/campaign/press_...

arthritisrese...arthritis-p...

[emmaf]

Hi Christina, that's great to hear they helped and you're right, they are upsetting but also thankfully a lot more positive about the future outcomes than 15-20 years ago.

Re: moving onto Biologics, i am not an expert but i think that 'tried' means that the Dmards need to have sufficently failed to work on your disease (or you have had a bad reaction to them over time), that the disease is progressing and that you have to pass a series of tests with a high enough score. I guess that this time period is different for everyone and thinking that maybe not everyone needs to move onto the Biologics?

On a different note, i also am looking into trying to radically impove my lifestyle with getting more excerise like cycling and walking (when i don't feel fatigued!) as i am begining to believe that lots of gentle excercise outdoors combined with getting those sunrays (Vitamin D3 levels higher) will also have a positive impact on the disease. All the best, Emma

[helixhelix in reply to emmaf]

Hi Emma, my doc explained that her approach isn't to automatically start with MTX if she thinks that a less violent DMARD might be sufficient. Apparently for lots of people their RA can be controlled with Hydroxy alone. There's obvioulsy a balance to find between treating the RA agressively and not dumping uneccessary drugs into your body. But may well be good for you.

And yes, healthy living has really made a difference for me. I don't want to tempt fate, but my life is ok. Different than I'd planned, but then lots of life is like that! Polly

[emmaf in reply to helixhelix]

Hi Polly, thanks for that information - very useful and also your link above to the article about how behind England gives out less biologic drugs compared to other European countries. All the best Emma