Hi All,

I went along to our meeting in Kirkcaldy, last evening. Our meeting was very informative although many more could have attended. Pat goes to so much effort for these meetings and it is so disappointing that so FEW come along.

I must say I was quite alarmed to hear from a doctor that the new triple therapy research which has been on going for sometime is NOT being used in many surgeries / hospitals. I found myself thinking about all the new people diagnosed and ONLY on ONE therapy drug. The New triple therapy has been proven to be a great success in managing this awful disease. But the sooner it is put into practice the better chance one has of getting RA under control. I asked him why many people are still being prescribed only one drug, and his answer really shocked me. He said as many consultants are old school and are living in the past and NOT using advanced research.

I find this appalling as peoples lives are at stake and we are so told about "The Window of Opportunity " I am eternally grateful my RA team here are fully up to date with the latest research and allowing their patients to benefit form this. Aggressive Treatment is the way forward and I urge all new patients to ask about the triple therapy and ask for a second opinion if the answer is no. It's your life and you are at their mercy when first diagnosed. If all consultants failed to move with the times in new research where would we all be. More so what's the point in scientists spending years doing research and creating a better future for those diagnosed if the consultants choose to ignore it. No one is above learning about new advances in Medical Science.

Lorna

Hi Lorna,

I think you will find that the triple therapy only been out (recommended by NiCE) in the last year or so. Drs are reluctant to change medication if its working for their patients. I was diagnosed a short while before the triple therapy and was put on the standard treatment of mtx and steriods and then planequil and steriods. Unfortunately I didnt get on with mtx and I think that forms one of the trio. As my RA was brought under control by this medication I suppose there was no need for my body to be pumped full of other toxins.

However I have to agree on the point on the standards being so widely different and it being a bit of a lottery when first diagnosed and we re left to deal with the consequences. Its difficult as when you are at the beginning it is naturally to trust the experts.. When I went to see my GP I thought I had either RA or RSI and although my blood showed high RF levels I was told to wait and it took nearly 6 months before finally diagnosed and then due to bad disorganisation further months past before I started treatment so which is past the window of opportunity... What does the window of opportunity mean does it mean that the RA disappears and mediation is withdrawn or does it mean the medication works and RA is controlled so no damage is caused?

I wonder though having been told that I am under remission does this means there is no damage taking place and I still have flares. which has me confused as to what remission actually means.

Hi Lorna,
I am really interested in this triple therapy as until I joined this site I had never heard of it.. I live in Wales and think that the guidelines vary a lot, I have been taking methotrexate for 14 months and am now up to 20mg weekly but still not greatly improving I still have early morning stiffness and constantly take painkillers, but nothung else has ever been considered. Its a bit worrying as we all know that once the damage is done its too late I have just had an operation on my shoulder which hasnt worked so now face further surgery.. Im so glad that you are getting the treatment you deserve... take care

hi Lorna,

thanks for the info all understood and taken in.

as i said i am going to see my GP who i have known 25 years so i trust him and he knows me well.

if he doesn't have the info needed then i am going to get him on the case.

whether i get to the meeting at the Hospital Tuesday evening is another matter but if i don't i shall phone my RA Nurse armed with this info and after my chat with my GP.

there is NOTHING like learning from fellow patients and as i type my hope is dwindling about just being on the Methotrexate alone. i know it takes time. i haven't had a blood test in 3 weeks well will be 3 weeks when i have it done as she said put it back a week to give the upped dose more chance and she was happy with all the other readings like my liver function ... but i also know my own body and know the inflammation is high.

i'll report back and let you know how i get on Lorna,

many thanks once again,

Suzanne x

hi Lorna,

no i've always been on fortnightly blood tests but as i say once the dose was increased it would have only been about a 10 day gap ... so when i went for the Emergency Appointment at the Hospital for assessment as my pain was increasing the Consultant said to put back the next bloods a week to give a better reading as to how the increase was working and the fact that she was pleased with all the other readings.

although i am going to leave my card with the Nurse this Thursday and ask her to fill it in rather than wait for the results as i normally do the next fortnight.

i am definately going to be on the case now though and i truly thank you for posting this info.

i'll come back with any news,

also pondering whether i should try and go to the NRAS meeting on Tuesday night even if i don't go for the start with the introductions etc.

i think i'll decide on the day depending on how i'm feeling.

Suzanne

Hi guys!

The points raised are interesting but I think perhaps there may be some misconceptions about the use of triple therapy, certainly in England and Wales. Majority of newly diagnosed patients will be given one drug initially and possibly a course of steroids (oral or injection). Only later will others be added.

Combination therapy, where two or more drugs are used together as part of a treatment plan have been shown to be more effective than a single DMARD. Methotrexate is the gold standard drug used in the treatment of RA and this is the one recommended in the NICE guidelines as the 'anchor' drug for combination therapy. Other drugs such as sulphasalasine, hydroxychloroquine, myocrisin or leflunomide can then be added, over a period of time, as part of the combination.

One of the reasons for adding the drugs in slowly is so that the disease and efficacy of the drugs can be adequately monitored. If side effects develop it can be tricky to know which particular drug is causing the problem if the guidelines aren't followed. Often patients respond well to methotrexate and the disease is brought under control without additional drugs being introduced.

An alternative approach is to combine several DMARDs at the outset and reduce down over time if disease is controlled (so called step down therapy), seems to be used less often. Each approach has its advantages and disadvantages.

I'm not sure how NHS Scotland differs from NHS England and Wales but I would expect that all authorities are required to follow the NICE guidelines which are considered to be 'best practice'. There are differences in procedure throughout the country but on the whole all consultants within the NHS are required to adhere to the guidelines.

Suzanne, you are still on the introductory level of methotrexate; it has to be introduced slowly to allow the body to build up to a larger dose and also to monitor possible toxicity/side effects. Commonly 20mg is used and can be effective but if not an additional or alternative drug will be tried. Methotrexate can take up to 3 months to be effective. It is early days and to introduce additional medication at this point would possibly confuse the issue. The best way to avoid joint damage is not to stress the joints by physical exertion and to bring the inflammation under control as quickly as possible; this is where your GP comes in! Could you ask for a depo-medrone injection or a short course of oral steroids? Suzanne, definitely try and get to the NRAS meeting as there will be people there with much experience who will be able to talk with you and perhaps put your mind at rest.

Here's the NRAS link about combination therapy, and links to NICE guidelines etc.

The 'Window of Opportunity', is considered to be about three months, which for most people will be about the time they visit their GP for the first time with symptoms. A recent study showed that, on average, people visited their GP four times before being referred on! That said, and being realistic, it is a very difficult disease to diagnose as there can be such variable symptoms. For anyone interested here's the NRAS link to Window of Opportunity

Ceri, perhaps now is the time to ask your rheumatologist about an alternative/additional treatment. Do ask NRAS for their booklets on drug treatments so that you can be up to date with all the facts for your next appointment.

Lorna, I suspect your blood tests will stay at monthly ... forever!! Unless you reach remission and the requirements for all the meds reduce. Knew that would make your day, I've been doing it for 21 years and currently on two weekly!

Hope this is useful to someone ... taken me nearly all night to type, be going to bed next , blooming hands!! And as for knees, don't get me started!

Lyn x

hi Lyn,

thankyou for you detailed account of how each drug is introduced and this is what i pretty much understood from my last appointment at the Hospital and also reading the blurb from NRAS and also from the Helpline.

Lorna it sounds so tempting and i am really pleased the Triple Therapy has worked for you i knew it had from one of your first posts to me. and it's good to know that other parts of the Country use this as their FIRST line of treatment.

i can only ask my GP about it on Wednesday although i guess his knowledge may be limited and i am going to ring my RA Nurse once i get Thursday's blood results back so will definately be asking her, also need to talk about my lack of sleep too although i wouldn't want my Sleeping Tablet changed so not sure what the answer is, and of course i have no idea if it is to do with the Methotrexate ... all i know is i am of out sorts like most of us not controlled yet.

but all this information is fantastic to learn for which i thank you.

Lorna if i do manage to go to the NRAS meeting Hubby will come with me ... unfortunately i can't walk far on my own due to the Osteo Arthritis in my knee's and have to resort to a wheelchair which i hate but it's a case of needs must at the moment especially while i am so fatigued with the RA.

once again many thanks Lorna and Lyn for all your input.

will let you know as and when.

Suzanne

To Suzzanne_p in reply to your comment about sleep I had a simular problem, and went to the doctors and after a long discussion about my diet recomened that I cut caffine out stright away, and I found after a few weeks of no cofee or tea my sleep has improved. I've had R.A for nearly three years now and take 20mgs of M.T.X a week 2 diclofenac a day and one tablet of folic acid a day exceopt on mtx day
Regards
Graham 7

hi Lyn,

the Co-Ordinator is Clare Jacklin am going to email her tomorrow and say i'll do my best to get there,

will let you know if i manage it.

Suzanne

Hi Lorna

I think we are at cross purposes here!!

I'm not saying that patients should be given individual drugs, one at a time forever and a day. I agree whole heartedly that Combination therapy is the way forward and these are the guidelines that have been adopted as best practice throughout NHS (England and Wales), I don't know about NHS (Scotland), you will know better than me!! This is the reason I included the link for anyone interested to read.

The thing that seems to be at odds is the method used ie 'step up' or 'step down'. No data is available yet as to the most effective treatment. Step Up could miss the window of opportunity, Step Down could over treat patients, 30-40% of whom may respond well to methotrexate monotherapy. This link is from the recent Oxford Journals Rheumatology study on the two approaches.

Last week at the NRAS conference I spoke to a lot of people about their RA and treatments (something I have followed with interest myself since being part of several trials over many years) and not one of those is on traditional methods! Some are on combination therapy and others on anti-tnf dual therapy.

Indeed it is reasonable to ask why people are not on combination therapies when these are the current adopted guidelines. However not all consultants use the 'step down' method and with the 'step up' method one drug alone, usually methotrexate, is given at the outset and others added to form the combination.

Hope this makes sense!

Suzanne, Clare is lovely! She works for NRAS and is the Volunteer Network Manager. She organised and ran the Co-ordinators course that I went on last week. She also came along to launch our new group in Blackpool. Hope you are able to make it!