Biologics -what next.

[Heathersmum69]

Hi everyone,I hope you are all okay. I have been told to stop taking the Leflunomide as they are making me ill. I have constant sickness and tummy cramps. My consultant has said that if the Leflunomide wasn't successful then the next step would be the Biologics. My question is what happens when they decide to change you to the Biologics? Do they say here are the new medications and off you go,or what? And what Anti TNF do they normally start with?

Any advice would be much appreciated.

Jane xxx

[dobsey]

There are loads of biological meds

Depends on what your rhummi starts you on. Trial and error

Sorry can't be more help I am on my third bio med and it's working great ritiximub They will find which one suits you hopefully

Bear in mind they are a very Aggressive medicine

Some are pen injection like humera every two weeks

Ritiximub is an infusion every six months Different ones 😊

Still take hydroxy and sulfraz

[Heathersmum69 in reply to dobsey]

Thank you for replying . Hopefully I will get it right on the Biologics.

I would like to carry on working so I need to find a med that agrees with me soon. I have already tried Methortrexate,Sulphasalazine and now the Leflunomide.

Thanks again.

Jane.

[skinnycappuccino]

Good morning Jane, I'm sorry to hear Leflunomide is making you ill I am very excited for you about the biologics though!!! I was put on a biologic after I failed MTX and HCQ and it's been the best thing ever as I responded very, very fast (5 days) and have enjoyed remission since about 3 years!

I don't know exactly how it works in the UK but my rheumy here in Switzerland suggested 2 biologics (Simponi and MabThera) and I decided based on his recommendation (Simponi) as well as the fact that I wanted an injection rather than an infusion. I am on Leflunomide alongside Simponi but at a low dose (10mg rather than 20mg). I think it's fairly usual to be on a DMARD alongside a biologic.

There has been a post recently about what and how much information doctors should give patients and I think you should ask him directly for his opinion on which biologic and also ask for the reason.

Lots of love and good luck,

Christine xx

[Heathersmum69 in reply to skinnycappuccino]

Hi Christine,

Thank you for replying. Well that is ever so good ,to be in remission. I do hope that Biologics work like that for me. I have tried Sulphanilamide,Methortrexate and now the Leflunomide and all have given me a reaction in one way or another. I pray that I can find something that works soon.

Thank you for your reply,and I hope you stay in remission for a long time.

P.S. Well done with your new job.

Jane xx

[skinnycappuccino in reply to Heathersmum69]

Thank you very much Jane I hope very much you'll have as much success as me with your biologic!! I certainly had no side effects from Simponi - I do have some from leflunomide but nowhere near as bad as with MTX so I'm happy with that. I'm off to see my rheumy now for steroid injections into my right foot. All other joints are fine so I'll be interested to know what he thinks caused the inflammation there!

Lots of love and good wishes,

Christine xx

[magglen]

I was put on the biologic Enbrel [Etanercept] eight years ago. I was almost bedridden for three months before I started it. I am now up on my feet, walk up to five miles with the ramblers once a week [we are the bus pass members and I am 80yrs old] and attempt to walk, weather permitting, 2 1/2 - 3 miles a day. I do hope it works as well for you xx

[Fra22-57]

Hi Jane. I have tried 3 biologics without success and had to wait 8 wks between starting each one which is so annoying. Also told I had to be on another DMARD with them.I am on sulfasalazine with steroids. Also told they can work then stop and its all trial n error.Unfortunately mine never started.I was just given leaflets n told to have a look through n decide which one to be on myself which I think is wrong as doctors know more than us.

I hope you get better luck than me and some people are on them for years

[Clare-NRAS Partner NRAS]

Hello Jane NRAS has a wealth of information about biologic therapies and there is the NICE guidelines in place that your rheumatology department will be required to follow that stipulate which drugs in which sequence can be considered etc. Please give our Helpline team a call Mon - Fri 9.30 to 4.30 0800 2987650 and they can talk it all through with you and send you some information on biologics. Also once you've been informed as to which biologic they are considering putting you on if you wanted to talk to someone else who has been on that therapy we can put you in touch with one of our trained telephone support volunteers over the phone. The NRAS helpline team will arrange it for you.

nras.org.uk

NRAS here to help every step of the way.

[Gillian1163]

I had 10 good years on etanercept and am now on rituximab. Few if any side effects - just a headache whilst having the infusion - my specialist nurse says its due to the accompanying steroids. The NRAS info is very helpful. Good luck

[moomie]

I have been told by two Drs and both Nurses in clinic that is my next step. Had my assessment by the Nurse four weeks apart. On the first visit I was given four drug leaflets to read. Last visit was a week ago. I passed that with the right das score. The Nurse just needed a Dr approval. The one she saw who has not seen me for 9 months wants me to have an ultra sound on my hands first to confirm synovitis because he says I am atypical R.A. He wants to see me as soon as the scan has been done because he has not seen me for a while. If he doesn't approve the biologics it will be Arava. Already on mtx sulpha hydrox naproxen and just finished steroids.

Nurse very good and checking other types of inflammatory arthritis in case they missed anything.

If biologics are a go she said it takes 6 weeks.

Hope you are successful and get good results.

[Hidden]

Lots of interesting replies. Each one's story is so different! The support available from the NRAS seems excellent. I am in Victoria BC and have been on Methotrexate for over a year with different combinations of DMARDS including Sulphzalasine, Plaquinil and Leflunomide, all of which had awful side effects. They won't prescribe Biologics until you have tried all the DMARDS in BC so I am now on Cimzia which is a TNFa inhibitor & Methotrexate. They are both self injections, one weekly & the other biweekly and it means I don't rely on going to a clinic for them. Keeping my fingers crossed that I see some results and control of the inflammation. Good luck! Cheers Doreen

[bodunchar]

Dont forget people the treatment you receive from the medical establishment is only one aspect of your healing.

The other aspects to look into are diet and lifestyle. These other areas are so complex they each need a different expert to guide you on and you must take these areas as seriously as your GP.

Ideally we would be seeing three experts, physical, mental and medicinal!

Doctors only know about medicine and supressing symptoms most dont know about good health.