agneso wrote:... I think I am going to go to it to get a second opinion. This is a life changing condition so it would be good to know I am getting the best advice... One of the conditions of going on the trial is that I have not taken any RA drug (steroids and pain killers dont count).
Hi Agnes
Good to hear from you again and I was also pleased to hear that you are considering a second opinion. It is a life changing lifelong condition and everyone is entitled to the very best treatment available without comprise. However that to me means the best for each individual patient and we are all very different. I understand the new regime of straight in with anti tnf drugs before anything else is tried but
1. this is for the benefit of those doing the trial.
2. if it works for you that's great but similarly a much less potent drug might have been equally effective.
3. there is no 'hard' evidence as yet that long term this works. It looks encouraging but ...
4. you could be receiving toxic treatment for a 'condition' that is self limiting.
5. the reason they want you on regularised steroid is to provide a starting point for the trial. Think you might need to stay on the 5mg prednisolone as part of the requirements.
The health authority will be getting paid well for running a trial and it seems to me that they are a little over keen to get you on the programme. Yes I am cynical and I am wary but this is your future. You are embarking on a new career for which your health is very important. As Barbara says you will be covered by the Disability Discrimination Act, that's fine if you are able to continue to work. I managed to stay at work for three weeks after diagnosis; I was bed bound, totally unable to move. It would not have helped me!
Information about the
CCP Test can be found on this link.
Methotrexate is an effective drug often used as a first line treatment. It can easily be adjusted to suit a patients particular needs. Once you have all the information you need you will be able to make the decision that is right for you at the present time. I was interested to read about your uncle having RA as there has been much discussion about genetic pre-disposition. I haven't read anything about it lately though.
All the best for your appointments. Do let us know how you go on. Take care,
Lyn x