Hi everyone,
It's Heathersmum here. After bruising and coming out in nasty sores I have been told to stop taking the Sulphasalazine. My nurse specialist has said that I will now be going on to the Biologics.
What do you think will be the one that they put me on first?
Any advice with Biologics . Thanks.
Xx
I was given Humira as my first biologic. Considering the complexities of BD, it is working well but it is not the miracle cocktail that I initially thought it might be.
All the best
Hello Heathersmum69.
Am not sure of the criteria used to match people with the many biologics available at present, but would imagine it would be something your Nurse Specialist will be discussing with you in order to decide.
Just as a point of interest, at a recent NRAS meeting, a Rheumatology Professor from Southend (Essex) came along for a Q&A. He spoke of research as going towards a way of taking biopsies to define the type of inflammatory cells present individually in order to choose the most efficient biologic available. He said this may be an available option in about 5 years' time. He also said that the biologic meds are being copied in China which would make them far cheaper in future! Interesting stuff.
Hope all goes well for you.
Best wishes,
Sandra
Hi Sandra - glad you were listening. Hope you can make the Sept meeting when speaker is Snr CNS so we might find out some more.
Regards
Thelma
Hi are you the original name here heathers mum or another heathers mum with a number? Just wondering?
Hi allanah,
Yes it's me the original Heathersmum, but I have changed my name as someone has been giving me grief!!! Anyway all sorted now
How are you keeping? I have had all sorts of problems. Recently I have been put on Sulphasalazine but that hasn't suited me. Today I have been told that I will be going on to Biologics, so onwards and upwards I go.
Jane xx
Hi Jane. I started enbrel biological treatment about 4 weeks ago. The next morning I felt relief from my first injection. It's pretty amazing. After 7 years of struggling with this awful disease. Good luck. I can see why it's so expensive now! X
Hi😊 I've been on tocilizumab biologics for nearly 2 years now. I have noticed a difference in the swelling but it still doesn't stop flare ups. I'm now on the 'self injections ' so I don't have to go into the hospital monthly. I still have check ups 6 monthly and bloods taken monthly. There are so many biologics. But well worth a try your rheumatologist will know the best one for you 😃 good luck.
Hi Heathersmum
It really varies in terms of which biologic they put you on, as hospitals and rheumatologists will have their own preferences. They may also give you a few options to choose from. As and when they give you a name or some names of medications, some of the information on the NRAS website might help:
The helpline team will also be happy to talk to you about the medication of course, especially if you have any concerns you want to talk through.
Kind regards
Victoria
(NRAS)
Hi Victoria,
What Biologic is made purely from plant, as rang Helpline tell me made from living cells from mice ... am strictly against animal testing.
I was put on Toxilizumab as a monthly infusion. The only sied effects I had were mouth ulcers and cold sores. I took folic acid every day except when my infusion day came round and all went really well.
Hi Heathersmum. I've been on Enbrel for 8 years and it's given me my life back. It's a weekly injection I do myself. There is a lot more choice now. Many hospitals give Cimzia as first choice because the manufacturer provides the first 3 months of medication free of charge to the NHS. I know lots of RA patients in my area who have got on really well with it. That injection you do every 2 weeks. Another popular 2-weekly injection is Humira. If you're squeamish about self-injecting, there are a number of infusions which can be done at the Rheumatology clinic which have to be done far less frequently. If the first biologic doesn't suit you, don't panic, your Rheumatology team won't give up, they'll try another!
Check out the NRAS web-site - it's a mine of information. Good luck.
Thank you for your reply. I'm not squeamish so I won't mind self injecting.
I will check the Nras website for some ore info.
Jane xx
I was given a choice of three anti tnfs - Enbrel, Humira or Simponi and an hour with the biologics nurse specialist to discuss how they work and how they are administered. I was then asked to get back to them to decide so they were very good at giving me options.
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