What's next after anti tnfs?

[Marnie87]

I have tried mtx which I had a severe reaction too, then had sulphazine which made my white blood count drop to 0.2. After being admitted to hospital I qualified for anti tnfs, I am 7 weeks in and been told my consultant to stop the injection this week to see if the hardness in my skin goes down (mentioned in my blog) I asked if the enbrel doesn't work what happems next doi try another anti tnf she said no we move on to the next step, I asked what that was an she said we will come to that when the time comes?

I was upset at this point so didn't really ask many more questions through my tears but now Im thinking about it.

Does anybody know what the next step is after anti tnfs??

[Beth58]

Not sure what your doctor means move onto the next step, as there are other TNF's just because one didn't work it doesn't mean none of them will and they could try combinations with other DMARD's. After that I'd guess joint replacement. But I am guessing.

Good luck hope you find a medication that suits and works for you. xxx

[Marnie87]

She said she wouldn't try an other anti tnf and I'm allergic to mtx and sulphazSine! Also if it was joint replacements I'd need a whole new body my RA is all over.

Thank you for your reply x

[cathie]

I think you should press her on why not try other ant tnfs there are many

[Beth58]

Hi again Marnie, I fully sympathise with your problem finding the right meds. Also understand the frustration and pain that comes with whole body involvement. I too have whole body pain and some internal organs have been affected, replacement surgery is out of the question due to other issues.

I still agree with Cathie, I think you should press your doctor for an explanation of what she means or request seeing another rhumy.

There are many combinations of TNF's, DMARD's/painkillers to try. I couldn't take MTX or Sulpha and even Leflunomide caused problems for 6mths before settling down and I still have pain, headaches and nausea.

We tried a variety of drugs over a 12 year period before finding a combination that suited and my body, I now take: Leflunomide, 3 mthly Kenalog injections and variety of painkillers/relaxants as for the depression, anger and frustration I've felt over the years I don't even go there as it just upsets me all over again!

I do hope you find something that suits and please do have a word with your doctor for an explanation, she's left you stressing over what she meant and stress is actually a contributory factor in causing flares.

Good luck

Liz xxx

[Victoria-NRAS Partner Moderator NRAS]

Dear Marnie

The next step after an anti-TNF has failed is normally a drug called rituximab, which is given by infusion in hospital, though this is not usually very successful if you are 'seronegative' (meaning if you are negative for rheumatoid factor). Unlike the TNF drugs, that target 'TNFa' cells, this drug targets B-cells, so works slightly differently.

After that, another TNF could be tried, so if they are not happy for you to have another one, it would be worth asking why this is. There are also some other biologic drugs that can be used after anti-TNF and rituximab.

The following NICE guidelines help to explain what drugs are available after the failure of an anti-TNF:

nice.org.uk/nicemedia/live/...

I hope that they find something that works well for you soon. As you will have read on here, many people with RA have gone through some awful periods of poor control, where they felt like there was no end in sight, but have now come out the other end having finally found a drug that works for them. I hope you will be one of these people soon, and am pleased to see that you are getting so much support on here!

Kind regards

Victoria

Helpline & Information Coordinator

[Marnie87 in reply to Victoria-NRAS]

Thank you ver much vicky. I know I have sero negative RA.

Off to read the guidelines

Thanks

Marnie. X