They're agreed that I can put the whole answer on the forum. I hope noone will be in my position in future, but this may be helpful should that be the case. What a brilliant organisation is NRAS, and they work very intelligently with other organisations. Sorry about the formatting, I've tried to make it easier to read though.
?Dear Cathie,
Thank you for your email. I will work through the answers to your questions below in what I hope will be a logical order:
3. What research is there on remission other than what I’ve referred to above
You mentioned in your email that the study you had found suggested that there is little evidence for ‘real remission’. I think that this is because there are differences between full remission, where a disease has completely gone and clinical remission (also called ‘drug-induced’ remission), where the disease effectively lies dormant and shows very low disease activity. RA falls under the latter of these, as the disease is not curable, but can go through periods of remission. Remission can also be measured in different ways, though a common measure is DAS of below 2.6.
Some of the research evidence on remission is outlines in the NICE guidelines for RA,along with recommendations. I know that the NICE guidelines do not cover Scotland, but they are generally recognised in terms of giving valid information and advice on the treatment of RA, so it may be useful to understand some of what they suggest with regards to remission:
On page 6 (slide 18) of the NICE guidelines for RA, they suggest that:
“Where the guidelines refer to sustained disease control, this suggests a minimum of six months of remission or minimal disease activity.”
nice.org.uk/nicemedia/live/...
This implies that treatment should only be stopped if you have been in remission for at least 6 monthsOn page 134 (slide 141) you can see the results of studies looking at remission, as well as the
recommendations that came out of this
RECOMMENDATIONS
R19 In people with established RA whose disease is stable, cautiously reduce dosages of
diseasemodifying or biological drugs. Return promptly to disease-controlling dosages at the
first sign of a flare
R20 When introducing new drugs to improve disease control into the treatment regimen of a person with established RA, consider decreasing or stopping their pre-existing rheumatological drugs once the disease is controlled.
R21 In any person with established rheumatoid arthritis in whom disease-modifying or
biological drug doses are being decreased or stopped, arrangements should be in place for
prompt review. As you can see, they recommend making this change gradually, and highlight the importance that something is put into place so that at the first signs of the RA symptoms returning you can get onto disease modifying medication again.
The SIGN document on management of early RA (which covers Scotland) goes into less detail, but also suggests slow withdrawal of treatment when in remission (page 11, slide 17):
“Where parallel or step-down strategies are employed, DMARDs should be carefully and
slowly withdrawn in patients who are in remission.”
My next consultant appointment is in mid-April. My last infliximab infusion is 15th November.
I think I need a new appointment with her in order to get a more considered opinion before the next due date for my infliximab, which would be mid-Jan. How can I do this if she ignores letters from my GP?I think that if you and your GP have tried to arrange for you to see her before this date and have not had any response you might want to consider making a formal complaint in order to get this resolved.
If the GP has written, but you have not tried to call the hospital to arrange an appointment it would be worth doing this first. The following web page gives information on how to go about complaining about your healthcare:
nhsnss.org/pages/contact/fe...
5. What recourse do I have if treatment is withdrawn?
As per the above, there is a complaints procedure that you can follow. However, if they are looking to withdraw the drugs and you feel that they should be tapered down more gradually I think it would probably be better to seek a 2nd opinion before it gets to this stage (you can ask your GP to arrange this), and to potentially change to a different consultant should the 2nd consultant have an approach that you are more comfortable with
2. Several people on Healthunlocked think that this could be a short sighted cost cutting measure.
Do you have any information on this? The health authority is Lothian. Could it be related to my age? I’m fast approaching 66 and am retired.I do not think that this would have anything to do with your age. Cost may be a part of the issue, but this should only be weighed against the benefit to your health. Biologic drugs are expensive drugs,and they are also powerful drugs, so for both of these reasons it would make sense not to keep you on them unnecessarily. However, they should not be taking you off of them purely to save money if there is good evidence to suggest that you need them in order to keep your condition under control.
4. What evidence is there about the dangers that I might not respond to future biological
treatments?We could not find a huge amount of information on this, but the studies we did find are outlined below. We looked for studies showing people coming off of infliximab and whether they successfully stayed in remission. We also found one study showing whether or not the infliximab was as successful a second time round if they had to go back onto it. I don’t think there would be any study showing whether or not they would respond as well to ‘future biologic treatments’ as you would need to have been on the drug already to know how well you would have responded to it pre-remission. Here are the details of the studies we found
1. In this study, the majority of patients with stable low DAS28 and stable treatment were
able to lower or discontinue infliximab, resulting in a considerable reduction in costs
without influencing their quality of life: ard.bmj.com/content/71/11/1...
2. About 55% of the 102 patients on this study with infliximab and MTX treatment, could
discontinue infliximab for more than 1 year without progression of radiological articular destruction or functional disturbance: ard.bmj.com/content/69/7/12...
3. Reintroducing infliximab: On re-establishing therapy, the ACR response on infliximab
was comparable in 12/14 patients and worse in only two. No adverse reactions were
observed: rheumatology.oxfordjournals...
6. How do we live with a condition that's basically incurable, with such unsympathetic doctors who engage in a guessing game with us. If we have pain, then the treatment isnt working and should be withdrawn. If we say no pain then we're in 'remission' and treatment should be withdrawn.I assume that this last question is largely rhetorical, but an understandable frustration. I suppose the answer, of there is one, is that large decisions like this should not be made on one, single factor, so lack of pain on its own for example would not mean that you were in remission, and they would need to look at a variety of factors before remission was determined (such as measuring your DAS).
Finally, you mention in your email that lupus has been considered as a diagnosis but that you haven’t been given any information on test results for this. I agree that you should be able to see these results, so it might be worth chasing this up if you are going through the above complaints procedure anyway. It might also be worth reading about the diagnosis/symptoms etc of lupus to see if you think they match with your situation:
arthritisresearchuk.org/art...
I hope that this helps to answer your queries, but please feel free to contact us again if any of the above is unclear.
Kind regards
Victoria
Victoria Butler
Helpline & Information Coordinator
NRAS
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