Failed on 4 Dmards - consultant this week what are the options?

[Gretchy]

Hi I've failed on 4 dmards so far. I've tried various forms of methotrexate, sulfasalizine, hydroxycholquinine and the last one was leflunomide. I've had terrible side effects on them all and had no change to the RA. I see the consultant again this week but I'm wondering what they are likely to do. There approach so far seems to have been to keep making me repeat the same four dmards over and over in the hope this time round I will tolerate them but it never happens.

I mentioned biologics last time and it was like I had said something terrible. The consultant said they were a drastic last resort for patients and far too expensive to try on someone diagnosed for 7 months.

I couldn't stand to try leflunomide again I'm scared I will get nothing now despite active disease. I'm just wondering what other medication options there are if I can't try biologics?

[Simba1992]

You could. try dietary modifications while you are waiting for meds. that help you. Often you can decease your inflammation and pain. Must feel terrible not being able to get anything that helps

[Ruffles13]

I have tried methotrexate, Leflunomide, and sulfasalazine, so I am interested as well to find out what else there is.

[popsmith1874]

Surely they will go forward to Biologics as the dmards are not doing the job right , I was the same failed 3 dmards and am on Benepali now alongside mtx 20mgs which has made a big difference

[helixhelix]

The guidelines are that if your RA is active (i.e. swollen & tender joints and raised inflammation markers) the the next step is to assess you for biologics. If that's what you want of course. So in the face of a cost conscious rheumy remember that these are the guidelines, stand your ground and ask politely to be considered for them.

The medieval aspect of qualifying for biologics is that you have to bad enough. So unless your RA is really evil, you have to come off everything before you are assessed to make sure you have the best chance of qualifying. Worth playing around with the DAS app on the NRAS site to see how you score - you have to get above 5.1. Which of course is a catch 22 if you are equally interested in trying dietary modifications, as if these do have any effect on lowering your inflammation levels then you might rule yourself out of the biologic range..... diet didn't do much for me, but then I have amazingly low inflammation levels anyway which is one reason why I never got close to qualifying for biologics.

If you feel that biologics aren't for you, there are other traditional drugs that some have had good success with such as gold and aziothiprine. But again like everything RA they don't work for everyone. It sounds like you may have to push your rheumy in the direction you want. Good luck.

[Gretchy]

My inflammatory markers are always normal despite obvious swelling it's why I never hit 5.1 I always hover around 4.9 my consultant acknowledges there are some people whose inflammation though obvious never registers in their blood

[Clare-NRAS Partner NRAS]

Dear Gretchy

May I start by saying YOU have not failed anything. The DRUGS/TREATMENT have failed you!

I am very disappointed to read about the attitude of the consultant about biologics being a DRASTIC LAST RESORT!? Biologics for many thousands of people with RA have been completely life changing and the cost should NOT be something that he/she should be considering as much as what is BEST for the individual patient.

In July there is due to be a NICE appraisal of a new category of medications called JAK inhibitors which may well (but no guarantee) be considered for use at an earlier stage of disease progression but that remains to be seen. I tell you this to try and give you some optimism for the future that THERE is more can be done to get your disease better under control. Hang in there and please do get in touch with our helpline if you want to talk through the situation. 0800 298 7650

Best of luck

[AgedCrone]

Oh dear, poor you...I'm sure most people on this site know how you are feeling right now!

To receive Biologucs it all depends on your DAS score... it has to reach 5.1 or above on consecutive blood tests one month apart. PCT's are very strict about adhering to this ...I don't know if there is any time limit of being diagnosed before Biologics can be applied for.....but some DMards...Mtx for example can take up to six months to be effective.

Did your rheumatologist tell you that Leflunomide says in your system for a long time? Ask if it is out of your system before taking another Dmard otherwise you won't be sure If it's the new meds that are/aren't working.

Getting the meds that help each individual can be a long & very trying process.

Have you tried something like a Depomedrone Steroid injection to calm thing down between changing Dmards? If you are one of the lucky ones & it works for you it can work wonders.

It took me 17 years to graduate on to Biologics.....Before this, I had retried a couple of Dmards & eventually (very successfully) took Mtx for around seven years until it eventually failed.

Don't despair...but do try to get your head around the idea that RA is not a one stop shop....most of us on this site have tried lots of remedies over the years before we get any sort of satisfactory result.

I know that must sound horrific as you were only diagnosed seven months ago, but (easy to say) try not to get too stressed as that really adds to the pain.

Study all the replies you get here & make a list of questions for your Rheumy & please try not to get too upset if you don't get the answers you want to hear.

I really hope your Rheumy comes up with something to help on your next visit.

[Gretchy]

Thanks everyone. Unfortunately the steroid injections have no effect. They tried two but they haven't worked. The main problem has been the side effects of the dmards have been so severe even at low dose that they were worse than the disease which is bad to start with. So I haven't been able to take one for long enough to know whether they might have worked eventually for the RA.