Hi Jxb,

What is your name ? Welcome to the forum. I am Lorna I have had RA for 3 years now and have been on the triple therapy since being diagnosed. My Rheumatologist swears by this therapy, she says everyone newly diagnosed should be offered this. I was really bad to start with almost everyone of my joints affected. But now I am really well and still on 2 of the therapy drugs. I had x rays at my last appt at the hospital to check for joint damage and was given the all clear, that is 3 lots I have had now.

I do hope you get somewhere with your appt, different areas do it differently, but this way really worked for me. I really hope you settle down soon and get things under control.

Take care Lorna x

Hi jxb

I am sorry that you have RA and that you are not on top of this dreaded disease.

I was diagnosed in January 2009 by a Consultant Rheumatologist who I saw privately. It cost me £150. Over the last two years I have seen both the private consultant and also my rheumy team on the NHS. I know it seems a bit naughty but I could not get appointments on the NHS when I was suffering in a lot of pain and was also not happy with the way my RA was being treated. My private Consultant now talks quite happily to the RA team and I am having very good care. My private consultant cannot prescribe medication for my RA but he always makes recommendations and then sends a letter to the RA team. The last time he saw me he referred me to an Orthopaedic surgeon as I was in excrutiating pain with my knees. My RA team had just upped my pain relief and medication and told me to get on with it. On 14th January I had my first total knee replacement and they found out that I had obviously had RA for most of my life and my knee had completely eroded.

Yesterday I had an appointment with my RA team and now all of a sudden they are panicking as they realise they need to be more pro-active with my treatment to stop my joints eroding any further. I am 48 and am the only bread winner in my house so need to keep on working.

I do not think we should have to pay to get the appropriate care but it has been the only way I have been able to get the help I needed. It may be an option that you could think about.

I think it is usual for them to give Methotrexate six months to work before they look at other options. Unfortunately if you cannot get an appointment for another six months then you are going beyond the time scale of moving onto other options. I would definitely get your GP involved if you are unable to do anything else as they can ask for your appointment to be brought forward if you explain how you are suffering.

Whilst you are waiting to get sorted, I would definitely recommend the paracetemol to help with the pain. I was told by my GP at the very beginning that paracetemol is very underestimated in pain relief. If you take the full 8 tablets over a 24 hours period and keep taking them each day, then you will be suprised how much the pain is alleviated. Obviously it is not a long-term solver of your problems as, you are quite right, when you are in pain your joints are being eroded but it may help you cope better.

I hope you get something sorted soon.

Jackie
xx

Hello!

Welcome to the forum, glad you have found NRAS but sorry you have RA.

There are a lot of misconceptions around about the diagnosis and treatment of RA. One of the many problems of waiting for a diagnosis is that the early symptoms of RA can be caused by many other diseases. You may wait a month or so before visiting a GP in the belief you have done too much gardening, decorating, mountain climbing or whatever. The GP may believe your reasons to be the case and prescribe Ibuprofen or similar. A month later you return, no better, GP prescribes anti-inflammatories. Before you know it 3 or 4 months may have passed. Eventually you arrive at the Rheumatologist who makes a diagnosis on blood tests, presenting factors, x-rays or whatever. You are diagnosed. The 'easy' bit is done!

Now comes the treatment aspect. There are many drugs available and used in the treatment of RA. The problem is finding the appropriate treatment for you personally. What works for one may not work for someone else. It is slightly trial and error until the right thing is found for you. This could be one drug, it could be a combination. Methotrexate is the gold standard drug used in the treatment and this is often the first drug tried and is used as the anchor drug. This can take up to 3 months to kick in but during that time blood tests are done to monitor the efficacy of the drug and its affects on you. RA drugs are toxic, they have to be to work on the rogue cells in the immune system. Often the methotrexate works but needs a second drug added to the mix to boost the effects. This may be sulfasalasine, hydroxychloroquine or a choice of others. At all times your blood results will be checked and you will have a disease activity score done (DAS) to check on the effects of the drugs. Aside from the DMARDS you should be receiving adequate pain relief of which there is a wealth of options. These won't affect the process of the disease but will help with the ongoing pain. Paracetamol is good but you must keep it topped up over the 24 hours for it to be effective.

In Scotland initially 3 DMARDS are given at the outset, 'step down' method; these are then reduced when the disease is controlled. Unfortunately this means blasting an already over-active immune system with a barrage of highly toxic treatments. When you bear in mind the side effects just one of these drugs can cause, three is, to my mind, over the top. In England and Wales the reverse is used, the 'step-up' method. Drugs are added over a period of time to hit the disease hard but in a well controlled way. This has been tried and tested and generally works very well.

A flare can be and often is continuous pain and swelling. Have a look at this blog I wrote recently. You need an early appointment either through the nurse or through your GP. Uncontrolled disease, which can be in the form of a flare, leads to joint damage. Your wrists and hands are a concern and need a very early referral and possibly to orthopaedics for further investigation.

Do keep posting and let us know how you go on. Good luck!

Lyn x

Hi there - sorry to hear you have joined us here but you will be amongst friends! I was diagnosed in Oct 2008 and started on Methotrexate in Jan 2009 with steroids and diclofenic. Since then I have had Sulphsalazine and Hydroxychloroquine added into the mix and initially it seemed to work quite well for me and there was talk of reducing my Methotrexate dose as a result - unfortunately that seems to have been short lived as I'm starting to get sore again - that's not to say it won't work for you though. I've been told that the triple combination I am on is used quite often although I've yet to meet another person on it! Thank goodness for the prescription pre-payment, my little lot would cost me a fortune otherwise!
Ju xx

hello jill
your experience seems to exactly mirror mine. I was also diagnosed last year and just on mtx (in scotland but with a private consultant which I didn't realise until lyn's post above is not the norm for this part of the uk) since august. l felt a bit like I was getting away with it as the morning stiffness and swelling was negligible and this was with cutting out the nsaids completely for the last two months. However, over the past week my left elbow particularly, my right thumb are very painful and most of my other joints generally and muscles? are starting to complain. I don't try and be a martyr by not taking pain killers and anti-inflammatories but personally feel a couple of days without will better enable me to tell the health care professionals what I am experiencing. From what I understand we are all so different when it comes to fine tuning our treatment and like you understand that the pain means something is going on .
.....eve x

Hi All,

Tried the Rheum Advice Line again this week; was engaged this time - usually it rings for a long time then someone who's not a specialist nurse answers and asks you to ring back in 5 mins. Apparently they used to have an answer-phone, but they got so many messages they couldn't keep it up as they didn't have the resources.

But managed to speak to a GP (can't get an appointment outside my work hours now they've changed the system, and can't take too much time off work, as my boss has not been very understanding). He understood my concern and said he would try to get through, then ring me back. If not, he would write and get them to bring my appointment forward. Haven't heard anything yet, but that was only Tues ...

I've actually been taking Naproxen since pre-MTX and asked at the last appointment if I still needed to take it along with the MTX. I guess I thought that if the MTX was doing its job, I could remove the anti-inflammatory. The answer was it was up to me and I could manage my own medication, as long as I didn't take too much of the same type of drug. So I stopped taking Naproxen, replacing it with Ibuprofen. It didn't last long! I found that the pain from my wrist/thumb and elbow diminished but reappeared in the pre-diagnosis places - knees, balls of feet and top of right arm.

So at the moment, continuing to wear the splint everyday to avoid those nasty jolts, and waiting for news from GP/Hospital. I still believe that adding another DMARD should help diminish the ongoing pains/damage, but as some of you say, at what cost? I'm also thinking I won't be given the choice as each hospital seems to have its own policy, let alone area of the UK. Will wait and see ...

Jill x