Need advice on TNF drugs if poss.

[piscean16]

My nurse has decided to put me on tnf drug as methotrexate not working for me. She gave me a booklet to read and told me to choose one. Read booklet but how do I know what one is right for me I asked for her advice but she just said choose one then ring her to let her know. Is this normal? I'm a bit gobsmacked any advice please

[Hidden]

Hello

This seems to be the way sometimes, the pathways to these medications can be very much the same as DMARDS.

There are situations where they will treat with DMARDS and Biologics at the same time, so as to cover their bets.

All I can suggest is give Her a call, after taking a pin and taking a chance ?

Good Luck

BOB

[piscean16]

Thanks bob, I think you are right just try one and see what happens. I'm off to get my pin now. Will let you all know how I get on.

Regards

Sharon

[Neonkitty59]

Hi Sharon, Usually they have two or three they use more at the hospital and recommend these which is what happened to me... A choice of three. I went to a meeting with the biologics sister where she gave three lots of info and discussed any hesitations but I made my in depth research with the nras pages and chose what I thought was right for me. That's all you can do! Enbrel is weekly and Humira fortnightly and I believe Simponi monthly .. Ask SkinnyCapuccino!! So this may have some bearing on your choice or if you would prefer a clickpen which those three are or a syringe. The biologics nurse/sister should arrange a meeting with you up talk re your screening for the med .. All routine bloods and TB and chest X-ray. All precautionary. Good luck and hope you can start your new med soon. x

[skinnycappuccino]

Good morning! This seems strange to me but apparently it's how it is done in some places. I took the one my rheumy recommended (Simponi) and he did say he chose it based on how my RA presented. He was spot on too, it works so well for me!

I think Neonkitty has a good point: it makes sense to look at how and how often you would administer the drugs. My rheumy had also considered MabThera but I told him infusions are out of the question. So you consider if you prefer injections or infusions. And if you pick a syringe one, if you prefer to take it weekly or less frequently. Just what you are most comfortable with. Without a medical background, this is pretty much all we have to go on from and it's pretty much trial and error. I think rheumys should at least make a recommendation of two or three biologics and not put all the responsibiity on the patient. But this is different for everyone!!

Good luck and I hope whichever biologic you choose will work well for you

Best, Christine x

[Crazyjo]

Hi, they did it that way with me, gave me the booklets and advised me to pick which one I thought would suit me better, not very helpful. I picked tocilizumab purely because it said in the details that it can help fatigue, not that it is helping much. Hope you can come to a decision that helps you x

[piscean16]

Thanks for all the advice i will take it all on board an try to make right decision for me. will let u all know how i get on

regards

sharon

[cathie]

Sharon, I'm in the same boat just (re)starting anti tnfs. I was just told embrel, but am having doubts after hearing about the supply problems. This would be a factor if I had a choice. I did have infusions of infliximab + methotrexate! every 8 weeks. A bit of a drag having to go to hospital, but it was good to be monitored closely. And it worked very well for me

[Kathyfitz12]

Hi Piscean 16. Gobsmacked? I am appalled!

No it's not normal to choose your own medication for goodness sake. Can you make an appointment to see your rheumatologist? I admit I know anything about TNF drugs - but it does sound a bit casual to me. I do hope you manage to get some help from your Rheumy or GP. Keep on trying, Kathy

[Vonnie10 in reply to Kathyfitz12]

This is a old post I'm gobsmacked to very iffy picking your own do these realise this, strange

[farm123]

Unfortunately not all drugs suit everybody and there is not an easy way of deciding which will work for you and it is a case of trying one and seeing if it works therefore it does not always matter too much which the first one is. They all have their pros and cons and different methods of administration. If you feel you are able to self inject this will have less impact on your day to day life in terms of time so I would try one of these types first as this is a long term condition and you will probably need some type of drug all your life. I have always had syringes but there are also pens for some of them. Whichever you choose you will be monitored for side effects with regular blood tests. For old hands feeling part of the decision process helps although the final decision lies with your consultant. NRAS or ARC website both have information on the drugs used. Farm

[Pands]

I had to do this when I first started. My final decision was really based on how often I would have to inject! (this was years ago before some of the infusions were on offer and there was a more limited number of biologics). Hope all goes well.

[allanah]

I got a choice of three and three booklets. I chose the weekly injection as I felt psychologically that I was " doing" something for my RA regularly . The doc said they all worked the same it was down to whether I wanted injections weekly two weekly or monthly.

[Gillian15649]

I have been on Enbrel for a few years. The recent problems with supply from H@H seem to be over now and am back to my normal deliveries. I would suggest a click pen if possible as a lot better than normal injections.

[Judetheobscure]

Hi, I felt it quite a responsibility when I had to choose but this is the NHS giving patients a choice and a say in their own treatment. Individual biologics will target different cells and will work better or worse for different people. There's no way of knowing which will work best for you. There is probably more feedback on Enbrel because it has been around the longest. However, it doesn't work for everyone. I chose Humira first but it had no effect at all, then tried Enbrel and it worked brilliantly: for others it's the reverse. It's just a question of trying and finding out which works for you. NRAS publish a great booklet on biologics. You can either ask for a hard copy or download. It won't make the choice any easier but at least it will be detailed information. Good Luck - hope it's first time lucky for you.

nras.org.uk/help_for_you/pu...

[Esteratsky]

Hi piscean16

No what your Nurse is doing is not normal! You need to speak to your Rheumatologist Consultant and ask his advice and tell him what your "Nurse" has advised you.

I am on TNF-Embrel and my Nurse did not advise me and only came to show me how to inject myself for future.

Good Luck but please take advice from your Consultant or GP.

Kind Regards ~ Ester

[Jeanabelle60]

this seems incredable to me. i have never had to choose at any time. my rhuemy team made all those decisions for me. after i had to come off mtx (liver side effect) i went on the waiting (had to wait for the minister to ok the cost) list for bio's. i was always told what drugs i would be going on next. they are the pro's, not the patient.

[Kerigrace]

Studies have shown that on average if Enbrel works for you it tends to work the longest of all the TNF options. I took Enbrel for 11 years. They also show that a combination of Enbrel and Methotrexate can be MOST effective. I took them together. I was diagnosed with RA 11 years ago at 36 yrs old. I am now switching to Humira because Enbrel has stopped working for me. I live in the U.S.

[piscean16]

Thank you everybody. Have decided on cimzia just because its a pen injection. Hope its the right decision, but will let you all know how I get on.

regards

sharon

[Scottishlad in reply to piscean16]

Are you sure it is a pen? My Cimzia is in a normal syringe. Perhaps this is a new option.

Cecil

[candyfloss in reply to Scottishlad]

hi im due to go on Cimzia and it is a syringe that I was shown

[AliceDianaB]

Totally unacceptable. Health care people cannot hide behind the 'Patient Choice' mantra - we are not doctors or nurses... They must do their job!

I would like to see this person reported to the right authorities - the Nursing Midwifery Council nmc-uk.org/patients-public/...

I know it's easy for me to suggest to do this, and hard to do when we are not feeling well...

[claireyj]

Hi Sharon that's great you are starting a biologic I have Cimzia too and it's been amazing , but like Cecil mentioned I have a normal syringe too. I had heard there were plans to offer Cimzia by pen so I reckon this could be a new thing?! Cecil do you reckon if this is the case we will be updated or do you reckon we would need to ask ? Anyway Sharon good luck with Cimzia and keep us updated how you are getting on Claire xx

[Paula-C]

I was given a choice of three and I chose to take Enbrel, simply for the reason that it's a weekly dose and if I did have any side effects it wouldn't take long for it to get out of my system.

It's worked well for me and I haven't had any side effects. I felt the difference the next day and was in remission at 12 weeks. My consultant did tell me that if it works it is one of the best anti tnf drugs to go on because your body does not make many antibodies against it. I assume that if you make lots of antibodies then the drug will stop working.

I think I have posted this on here somewhere, but I will put it here again.

I did read on another forum that someones specialist nurse told her that the reason that they like us to take MTX along with the anti tnf drugs is that MTX helps stops us making antibodies against the drug. So that maybe why Kerigrace stated in an earlier post that it is one of the longest working anti tnf's.

When I had another DMARD added a few years ago I was then give a choice of two and I had to make the decision of what drug to take. I often wonder how many other people with chronic illness have to decide which drugs to take.

Paula x

[Zigzager]

I got to make my own choice too and was surprised, I chose Humira, now 3 years later for various reasons it has stopped working so Rheumy says would be usual to try another anti TNf again I can choose but she mentioned Simponi. , good to hear good reports on it.

[Footdoc]

Patient choice the new mantra. The biologics can have major side-effects, therefore, if you chose the biologic no comeback on anyone should you feel litigation is the answer to a problem. Hence, you choose, your problem!

[francherry]

Yes, I had the same situation - I could choose from Leflunomide, Humira or Enbrel. Chose Humira but was only on it for a few weeks before starting Enbrel.

[piscean16]

Hi everyone, have just read all your replies. Am sitting here panicking now as told nurse I would try cimzia because I thought it was a click pen. Now I find out its a syringe, the thought of having to inject again makes me feel sick. I have just checked in my booklet and I didn,t read it properly. I think I got confused with trying to work them all out. And I think its too late now to change my mind. Really , really fed up now.

Thank you for all the advice will let you know how I get on

Regards

Sharon

[Vonnie10]

This post is crazy end of