Good hospital appointment: I have just got home from a... - NRAS

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Good hospital appointment

nellysgran profile image
11 Replies

I have just got home from a hospital app with my consultant and rheumy nurse, my DAS was checked and now I am going to be put on biologics if the next app is the same as today. Has anyone got any suggestions as to the best one ???. Sorry maybe should have put this in a question.

Any help would be appreciated, thanks Wendy

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nellysgran profile image
nellysgran
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11 Replies
cathie profile image
cathie

I think the only real answer to this is that different medications suit different people. So its not an easy question to answer. Look at the NRAS and Arthritis research UK websites they discuss the different biologics. Good luck

allanah profile image
allanah

well done! i found my rheumy recommended what he found would be best for me. Some were great , the other not so helpful xx

nellysgran profile image
nellysgran

Thank you both for your replies, I have just been reading about the different ones, gosh..... they sound a bit frightening !

I will have to wait and see what they suggest. x

PJ68 profile image
PJ68

I agree - get the info, read the details and let them guide you, but - yes be aware of side effect and anything that you are concerned about!

Good luck!

watson3 profile image
watson3

I agree that you should take advice from your Doctor. Also do some research yourself. Contact the NRAS HELPLINE.

Ask what the efficacy of the drugs are for your type of arthritis.

Check the NICE guideline too. Don't be afraid to ask questions.

Your Doctor is there to advise and allay any fears.

Remember to Read all the instruction with the drugs. Any worrying side effects Contact your team or your GP.

GOOD LUCK. remember we are all here for you too. That the blessing of this site.someone always has the ability and take the time to answer your questions.

Jeanabelle60 profile image
Jeanabelle60

like others have said everyone is different and we all respond differently to different drugs!!!!!! i know, that no help at at all is it?

i have been on several bio's, humira, enbrel, tocilamab and now abatacept. they all worked to variying degrees but i had to come off them all because either they didn't work for me or i took a reaction to them.

i have been on abatacept now since last november and for me it has been like getting a new body......it is wonderful and has turned my life around completely.

i'm sure you will find the one that is right for you.....it is simply a case of finding the right one. they are fabulous drugs.....good luck.

nellysgran profile image
nellysgran in reply to Jeanabelle60

Thank you Jeanabelle glad you have found one that is right for you, I hope the same suits me.

Neonkitty59 profile image
Neonkitty59

Hi Nellysgran, I was given some excellent advice when I phoned the ladies on the NRAS Helpline. Said I was "anxious about starting a biologic" (think one of my threads is actually called just that and I got great advice!) For ease of home use and the fact I had all my bloods and tests cleared which meant I didn't have to exude certain Anti-TNF meds, I was given a choice of three anti-TNF's .. Simponi, Enbrel, Humira. The choice was mine as they said they could not tell me which one would work best. I chose on the fact Enbrel was the most established, but almost chose Simponi as I knew a sweet girl on here who had got fantastic results quickly. We are all unique though and our responses are unique also. My Health Authority is Kirklees and I guess different ones have different Anti-TNF's available. I believe Simponi is a more expensive med but cost wasn't an issue in my area and Simponi was available. The Biologics sister/nurse will talk to you in depth at a separate meeting and arrange blood tests, TB test (skin scratch test) and a chest x-ray .. all standard procedure. They gave me the info packs for all three possible anti-TNF's and off I went to decide. She was available for further discussion but I made my mind up after my research. If an Anti-TNF fails due to allergic or other reaction you are allowed a second choice here in West Yorkshire. Think that is the national NICE recommendation but I know people in my area and also out of it with special health conditions which prevent them from taking other types of biologics so have been allowed to try others on that same level of medication .. another from the list of Anti-TNFs.

As I have tried two Anti-TNF's and not had the lasting effect of improvement I have wanted (too long to explain here on an already long post!) I am due to start Rituximab on 1 April. That is a B Cell blocker and the next tier on from the Anti-TNF's. I was told by my Consultant in January if I hadn't improved in the next month I would need to change meds. I haven't, so I'm changing! This time two of the B Cell blockers were discussed .. Tocilizumab and Rituximab. Both infusions but Tocili is also a syringe now I believe. My Consultant said her strong recommendation was Rituximab so I have gone with her judgement. I asked about Abatercept and she said as this is a relatively new med, the hospital recommends that the T Cell/B Cell Blockers are used after Anti-TNF's and before Abatercept. I don't know much about the other Anti-TNF's but know there is a lot of excellent information on the NRAS Biologics pages. That's where I started, which led me to here! ;-)

My doc is fab and supports any problems I have due to my RA/OA and knows my Rheumy, but will never intervene on anything which should be a Rheumy decision. He can change basic painkillers/anti-inflams but would never advise on biologics as he hasn't got that in depth knowledge but one previous GP trained in Rheumatology and had a great deal of knowledge. Whoops ... that's enough for now! Good Luck Wendy, Julie xx

nellysgran profile image
nellysgran in reply to Neonkitty59

Thank you Julie for your very informative answer, I will have a look at those pages, like you I have a good GP but not as informed as my Rheumy, I go back on 11th April so I will let you know what happens, I have had all the blood tests and x-rays, Take Care Wendy xx

claireyj profile image
claireyj

Hi Wendy I only pop in now and again but seen your blog and I really hope the biologics work for you ...I think you and me started the Methx journey at the same time but sadly like you not enough for me so I'm now on a biologic. Mine is Cimzia and it's changed my life, not gonna speak too soon as never know what's round the corner but at 43 with 2 kids a hubby and busy life thank god for Cimzia I feel 98% the woman I was 2 years ago .. There are risks but quality of life is important and for me the benefits completely out way the risks - good luck with whatever biologic you are given and I'll keep everything crossed for you that it gives you your life back too xxx Claire xx

nellysgran profile image
nellysgran in reply to claireyj

Hi Claire, yes we did start Mtx together but you beat me to the biologic I'm so glad it has made a difference to your life, its the thing that we all want isn't it, to feel more normal again. I will let you know what happens after my next appointment,

I must admit its a bit scary but everyone on here helps with their posts,

Thanks again, Claire I hope you continue to feel great, my fingers are crossed for you. xxx

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