Agneso - thanks. You've said exactly what I have been thinking all along. And yes, your story has been of great help to me. This article: http://rheumatology.oxfo...ntent/abstract/49/3/406 (you can only read the abstract) talks about this 3 month window to tackle early RA with the right drug for you. I hear a lot of people saying Anti-TNFs are toxic and better to try the old tried and tested first - but in the 3 months it takes for them to 'kick in' your 'window of opportunity' is...well, it's out the window, isn't it?!

I, like you, want to get out and living my life (though not too fussed for the heals, mind you) but I know my body better than anyone. The way I feel now (dog tired and worried/gutted that I can't do all the things I was..) had I known about that trial that you're on, I'd've taken it. The meds seem to be getting better as time goes on (ok, even if they are more toxic/more potent) they would not have been NICE approved (one would hope!)

I have just received this reply from Dr Alan Nye (Clinical Advisor Elective Care, Department of Health): 'I am sorry to hear of your new diagnosis of RA – but you are right not to despair – the treatment for RA has been revolutionised in the past 10 years and we are now far more active in treating new onset RA and have access to more potent drugs (biologics) to those that need them.'

Nearly 4 months now, my dr has towed the line re meds - will I thank her for that or wish she'd been a bit more agressive in the treatment..? Are her hands tied with costs/budgets and all that rubbish...? Only time will tell. And times the factor! My dr has said, let's give the mthx another month and then we'll start the application for Anti-TNF (as your case is strong), but this could take 2 months. So, biologics may be available but...time!

Where did you go for a 2nd opinion? I'm at St George's in Tooting. I'm thinking of going to either Guys & St Thomas' or West Middlesex. My GP has asked me just to supply a name and it will be done.

Which drug company is it? Are you managing to avoid infections? Do they regularly monitor your blood to check for potential risks? Do you have to inject yourself?

Thanks and good luck to you too!

Hi again John



I think the point of Agnes' story is that she has been put on a trial ... not for her benefit but because she 'fits' the criteria that the drug company were looking for ie to test Enbrel on newly diagnosed patients with RA. There is a whole heap of difference between actively treating a patient with the appropriate drug and using them as a guinea pig not knowing the likely outcome. There have been several articles written about the use of patients in this way and the long term effects of inappropriate diagnosis and treatment.

1. It is not in the best interests of the patient, their individual needs are not being met. Some will go on to develop very severe disease because of the use of incorrect treatment plans.
2. Patients have been used who display only very minor symptoms and either do not have RA but a milder form of inflammatory disease, or would possibly have achieved remission without any medical intervention. RA, in some cases, is known to flare badly at the outset and then go into remission.
3. It is misleading to others who have the same condition and expect the treatment to be their 'cure'.

I'm so pleased Agnes is on the way to remission but it is more likely due to her own powers of healing than to the extremely low dosage of medication she has been given. Anyone with active moderate RA would not benefit from the amount of drugs she is receiving ie Methotrexate 10mg (almost minimum), Enbrel 1ml (standard dose is 50ml) and Prednisolone 5ml now reduced to 2.5ml (5ml is a maintenance dose and 2.5 negligible).

There's not a postcode lottery for biologics. It is a series of guidelines issued by Nice to ensure appropriate treatment. I agree different practitioners use different methods but there really is no way of saying one is the right way and another wrong. Nice has approved the biologics, for use in certain circumstances, but the long term effects are not known. On this forum there are perhaps 25 regular posters (obviously many more who dip in and out). Of these at least three have had severe and life threatening reactions to drugs prescribed for RA, including myself. Many more have had to stop medication due to liver and kidney problems; these are mainly reversible but nevertheless indicate drug intolerance.

As regards "window of opportunity" the biologics are almost always used in combination for best effect. By the time the funding is agreed after two assessments, including DAS, blood tests, X-rays (possibly MRI scans) and the drugs start to take effect it is about four months absolute minimum. It is certainly not a quick fix! That 'window' can be anything from 3 months to 2 years or even longer depending on an individual and their disease, everyone is different.

I very much appreciate your anxiety John and your wish to get onto what you consider to be more suitable treatment. We would all like to feel the way we used to before RA, we would all like to avoid the fatigue, the pain and everything that gets thrown our way. The reality is however that whilst we may feel better the disease will always be there and alongside it it's travelling companions that tag along for the fun of it. Biologics are the way forward but not to the point of disregarding other treatments which for most patients are sufficient to bring about control of the symptoms. They are most often given alongside Methotrexate so it is good you are already on this drug as its effectiveness can be fully considered before a biologic is offered. If you don't respond to Methotrexate, which is unusual, other avenues may need to be considered.

So much good advice has been given by members on this forum, borne out of personal experiences, and by your own practitioner. A second opinion will confirm the RA, it will not help you skip the Nice guidelines to a faster approval of biologics; the criteria for which is failure on two DMARDS and ongoing moderate to severe RA as determined by the assessments. My response is not in any way intended to put down the 'biologics', I have been on one myself for 7 years and recognise the improvement in quality of life it has given me but the prospect of a lifetime on these potentially harmful treatments is not one to be taken lightly.

I got up early today to add to this post and it has taken me an hour and a half to type and check facts. I have written this out of concern for you, it is of no benefit to me. After 22 years of personal experience, thousands of hours of research, I have seen people die with RA as the main antagonist, I have seen those who are crippled with RA, I have seen lives destroyed by RA but I have also seen and spoken with people who have achieved excellent results by following their practitioners advice. What you choose to do from here on in will shape your life for good or for bad. Do the research 'unblinkered' and make the decisions wisely. Despite Agnes' lucky break there are no quick fixes!

Good luck John,

Lyn x

Same from me Lyn.
It's good to have the facts, but I know you are far from well at the moment.
For me, the biologics were definitely a last resort, having tried and failed on most of the DMARDS.
Please get some rest now!!!

Love and hugs, Doreen xx

Gosh it must have taken all your effort to write this lyn. Good informative points

Take care

John

Welcome to the forum and sorry you have the dreaded RA.

I sympathise with you fully. I too am the sole wage earner in my family. My Husband had to retire from work 4 years ago through ill health. He was very ill and I was very stressed looking after him . In the Summer of 2008 I started to feel unwell. I found out I had shingles which took me many months to get over. On Christmas Eve I came down with the flu (after having a flu injection) and was bed bound for two weeks with hardly the strength to lift my head for a drink. In January 2009 I realised my health was really deteriorating, I felt constantly tired and my joints were swollen and painful. Luckily my GP realised it might be RA as my immune system was obviously breaking down. I was referred privately to a Rheumatologist (thank God for work health insurance) and within a couple of weeks I had my definite diagnosis of sero positive RA.

I panicked. How was I going to cope with this dreadful disease and carry on working full time? I cannot afford financially to give up work. I have a 14 year old Daughter who I want to put through university. I love my job and it broke my heart that I would not be able to carry on supporting my family.

I was put on Methotrexate and Naproxen and sent away to see how I got on. It was a very long three months before I saw the slightest sign of improvement. I was bolstered along with steriod injections. Within six months I also had Sulfasalazine added to the mix. By Christmas 2009 I was still struggling but still managing to hold down my job.

Unforutnately I had a reaction to the Sulfasalazine so as I was deemed to have failed on both this and Methotrexate and I was then advised that anti-tnf's were my only hope. I started Enbrel in March but unfortunately also had a reaction to this. Luckily as I have failed on this within the first six months I can now move on to Humira. I am waiting with bated breath for my first injections to arrive.

It has been a long 18 months battling with trying to find the right drugs. I have had to change my lifestyle completely. If I am not working then I rest. My employers have been good and allow me to work from home two days a week. I do an office based job but I never sit down when I am at work!!

I am still very new to RA compared to a lot of people on this site and I still do not think I have fully accepted the diagnosis.

John you will get through this. It will be a battle. Sometimes I could weep from sheer exhaustion but you have to pick yourself up and move on to the next day. There are some wonder drugs out there as you will have read from Jenni's post. She had given up hope of ever feeling better and low and behold Cimzia came along. Keep the faith.

As you have already seen, you will find lots of support on this forum. It has been a god send to me. The wonderful people on this forum know exactly how I have been feeling and will give me the true picture of what I am going to have to face.

I hope that you start to feel some relief soon from the medication you are on and keep on posting as having someone to listen to is half the battle.

Take care

Jackie
xx

Hi John,

Good luck with seeing your hand surgeon tomorrow, I hope he can help your hand problems without further surgery.
It may be that the tendons are inflamed and tight, I don't know, but maybe it can be helped with steroid injections? Your surgeon will know anyway, it's good that you are seeing him so soon.

Love, Doreen xx

Hi John

I totally sympathize with all you say, having only just got RA in recent days and still trying to control pain having taken the DMARD leflunomide/ hydox/ pred/ diclo for five months. I sometimes wonder where I m going, but staying positive and sure things will come right eventually even if the meds have to be changed. I m always reading such invaluable advice on our forum, about all manner of things - you would never find out from anywhere else. The point was raised the other week on here about using the word " arthritis " and how misleading it is. I now refer to is as an autoimmune disease of the joints.

Julia

No worries, thanks
Jx