Stopping enbrel

[norton47]

Hi All

Feeling really down, after waiting 7 months to start enbrel I have had to stop, pins and needles in feet, side of face and horrible cramps in left leg. Not surprised as I was investigated for MS when I first got these symptoms 10 years ago, but investigations were inconclusive so thought enbrel was worth a try.

Enbrel did seem to be working and swelling , stiffness and pain were getting better.

Do all biologicals carry the same risk, is there one that doesn't cause the MS symptoms, methotrxate and sulfazialine didn't work for me .

[Livingston]

I was initially investigated for MS when trying to find a reason for my symptoms and was eventually diagnosed with Lupus. The label changed to RD after a while. My old Rheumatologist kept on picking away at the idea of MS and wondering if she should re-refer me to neurology & I never could understand why until I did a bit of reading about biologics.

I'm not sure if this is a problem with some more than others, but those I have researched are not felt to be suitable for people with MS-type issues.

The MS question is back on the table for me again as I'm onto my 4th DMARD. However, I doubt that my DAS number will ever qualify me for biologics.

I hope they find you something you can take - the last thing you want is MS symptoms on top RD.

[cathie]

I hope you can find something that works for you. Look at the NRAS and also Arthritis research uk websites as they give you reliable info on the biologics. There are quite a few different ones which work on different aspects of the protein which causes inflammation, so you and your rheumy may be able to try different ones. I've tried about 4 - the first worked best for me but the 4th (rituximab) seems to be good.

C

[hatshepsut]

I'm so sorry that you have had to stop enbrel, I do know how gutting it is when you have dared to hope that something is working,and then it's taken away.

But don't despair, I am now on my third biologic, and it has helped, there are several different ones, the NRAS site has great information on all of them, and the fact that one isn't for you doesn't mean that you can't try another one.

Hope you are successful next time. M xx

[Someonesmother]

Oh no that isn;t good news. I am sure there are others that don't have that risk. I hope you find an alternative. I would be gutted if I have to come off enbrel after waiting so long too.

[Hidden]

Hi norton47

I'm not sure you need to ask your rheumy. Sorry to hear you couldn't continue on Enbrel. I had the same thing with humira. I was taken in for an mri but it was normal. I still get the pins and needles sometimes, recently had them with Amoxicillin. I waited for Rituximab to be licences and have been on it 8 years now so maybe that is an option. Hope you find another drug soon

Kiki x

[norton47]

Thanks to everyone for the support I have an appointment with consultant on Friday, let's hope he has some suggestions.