Hmmm just had a RA Nurse appt and explained all my troubles plus the fact that i was no further along than when diagnosed a year ago .DAS score in the post !.

She said perhaps we could try sulfasalasine .. but then she went to see consultant ...who after talking to me stated .. well there is no point taking poison so stop taking the RA drugs MTX and Leflunomide .. but keep some leflunomide as a back up :O This for 3 months (will be 4 ..at the next appt)

Anyone else had this? , as i had no real bad side effects from MTX or Leflu (or rather the side effects were handle able )

Bit concerned that the disease will do more damage with nothing to fight it :O

Rich

Rich

How bizarre. Either you have RA or you don't and I thought the one drug which NICE indicate for treating RA is Methotrexate. I have failed on many drugs but I have always continued to take the Methotrexate. Every time you are in pain you are causing damage to your joints and you need something to stop this. As it takes at least 12 weeks for the Methotexate to start doing its job, surely it would be ridiculous to stop it for 3-4 months only to have to be told to maybe go back on it.

I don't know if this is possible Rich, but I would definitely go for a second opinion. You have been diagnosed one year and those first few months are the most important to try and get your RA under control before the damage starts.

I wonder if your DAS score is low and the Consultant has decided "there is nothing much wrong with you". As you know RA can change dramatically from day to day. When you did your DAS score did you say what was hurting on that particular day or did you base your pain over a longer time period? I do this and it gives a good indication of my overall pain. My DAS score is 6.4 at present and I have been on anti-tnf's etc. Sometimes you have to be "inventive" if that is the right word to get the RA team to take note of how you are suffering in general, not on the particular day they see you.

You really need to take this in hand now and not wait another 3-4 months.

Keep us posted.

Jackie
x

Well! This has to be the weirdest thing I 've ever read-doesn't make sense at all does it? can you get a second opinion?

That is very strange Rich!
I take it he was the consultant....not a porter or something?? It's unbelievable "listening" to you tell him you are no further on than when you started with RA and then taking you off the drugs!"
I think it's time to change consultants!

Doreen xx

hello rich
if one thing has been forced home to us all it is that early treatment brings the best results. You say that you are no further along after one year and I suppose the consultant's take on it is that as the mtx and leflunomide do not appear to be working there is not much point in continuing with them. It seems to me the nurse had it right suggesting another DMARD, but clearly you cannot be left for four months with nothing. If your blood tests are available at the consultation it is easy for the consultant to give you DAS score during the appointment. As we encouraged to be part of the team that manages our illness we sometimes need to be a bit pushy to get all the information we can to help ourselves. Could you perhaps ask him, either directly or via the GP, to give you an idea of what he is planning after your next consultation, he will of course have to consider a few scenarios depending on how things are with you then. I think the idea of your having to traipse around to find an alternative hospital because you are not getting the care you should be, with a consultant you feel confident with, is appalling. wishing you the very best with all of this
.....eve xx

Oh Rich - this sounds pretty horrific to me. No drugs = possible further joint deterioration. I am wondering whether their thinking is that they will put you forward for Anti TNF at your next appointment? However, who knows what damage will be done in the meantime.

Your DAS score is horrific and I would have thought you are an ideal candidate for Anti-TNF - but what do I know?

Changing hospitals is a pain but a lot of us have done it. My treatment up here was abysmal. I remember asking my so called consultant to explain the way the DMARD's worked. His reply? "That's for me to worry about, not you my dear". I could have smacked him one! I think he took one look at me and equated the fact that I am overweight with having no brain - doh!

Anyway, I did loads of research and ended up at Bolton (16 miles away) but it is worth every mile. They are wonderful. NRAS could probably help with a list of consultants or something similar.

Take care but make a HUGE fuss!

Love Jeanx

Hi Rich

So pleased the helpline gave you some valuable advise, lets hope that your consultant gets back to you pronto.

Hoping you'll soon be feeling better.

Best Wishes

Sue

Well Rich. I think 'gobsmacked' is the word. I have never heard anything so ridiculous. This flies in the face of all we know to be true about ra, not least the importance of medication to slow down permanent damage of joints. As you may remember, I had to come off everything around November time and after 8 weeks, wow! the biggest flare up ever. I do not want to go there again and I don't want you to go there either so I hope you get this sorted asap. Good luck

Sheila x

Hi Rich

A bit late arriving here ... the consequence of having three kids close together all getting important exam results at the same time and requiring 'mum' to pick up pieces and re-assemble!

I am utterly amazed and can't imagine what the doctor must have been thinking about! When I came off meds, due to wrong information, for 7 weeks last year I ended up in a huge flare situation. Since then, now 12 months on, meds don't seem to work any more and the RA remains uncontrolled. It doesn't take much for joints to become permanently damaged when the disease is not controlled (doesn't happen overnight though so you have a little time!).

Here's a link to doing DAS yourself. I don't normally quote this willy nilly because there is a right and a wrong way of checking for fluid/inflammation in joints. If it's not done correctly you could end up with a whopping score! Check joints by pressing firmly at the sides rather than front and back.

Hope the GP appointment was a success and things are quickly and efficiently sorted for you. Do let us know how you got on. We ought to package the "The Waiting Game" and sell it to raise funds ... now there's a thought!

Lyn x