Please let me know of experience with anti tnf

Hello, I'm on methotrexate , sulfasalaszeine, and hydro chloroquine , about to start Cimsza as well. Please can people give their experiences of anti tnf. I'm hoping to have a transformation, das scores are really high all the time and I'm really hoping that the new tablets will give me some life back.

22 Replies

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  • CImZA IS an INJECTION but it seems the flavour of the month for anti tnf..most new people are given this at the moment and it seems to give good results x

  • Good, I'm ready and willing for a 'good response', thank you for letting me know.

  • Hi Case,

    I was diagnosed with RA about a year ago, tried two DMARDS and started on anti- TNF last month. I think it depends on your own NHS trust which ones you are offered, and for me we opted for Simponi, because it suits me better. It is a monthly injection, with an epipen type administration . Delivered anywhere in the country, wherever I am, and only one at a time so I only have to store in the fridge for a few days, rather than a three month supply. I took my first injection last month and the result was truly amazing. It may be too early to tel at the moment, but the initial result is very positive. The support team are amazing, checking with me every month and they are available for me 24/7. I have only positives to say about this treatment.

    I do so hope you have a really good response

    Gentle hugs

  • Thank you. I love your 'gentle hugs', I so get it! I'm really looking forward to my life being transformed, you never know I may even run a marathon for NRAS, as a thank you to the informed support and advice we all get. Ok, yes, this is a pipe dream but it would be nice!!

  • Well maybe we should both do something together- not sure I could run a marathon, but I am tentively thinking about a long distance walk next year- want to join me? It all depends on continued success. As for pipe dreams, we all need pipe dreams- what keeps us going. So excited for you and not to get you too excited and then be disappointed, my pipe dream was that the antiTNF would work quickly, never did I imagine that it would be next day! Yet there it was, no- one could take the smile off my face, and I was able to walk into a customer the following week wearing a pair of heels. Ok so I was sore afterwards but did not care, I just felt alive again.. Please let me know- when is your first injection due? X

  • Still waiting to have the phone call to arrange first consultation and injection, mind u it was Friday that Rheumy nurse put in application so I need to be patient. I can't get over that it was next day for u, wow!! I'll keep u updated.

    Pipe dreams , I agree, when I was well I couldn't have run a marathon! Nice walk, with a cream tea at the end sounds just the job for me! Or a spa! Take care.

  • Hi Case, Humira injections transformed my life. Before I could not get out of the bath or

    even push the duvet off in the morning. There were some side effects but I have now

    worked through them. Good Luck.

  • Thank you. I'm glad you've had a good response. It really seems that these drugs have made a difference to people's lives. Fingers crossed for me.

  • I've been on humira for 8 years now waited 5 years to get it.I tryed all types and mixes of tablets but nothing was sorting it at 32 years old I couldn't dress my self or put my shoes on and life was a big struggle.Humira has changed my life I still get lots of aches and pains just got to keep an eye that I don't over do it i do get steroid injections 2 a year into right knee.side effects I get are a bit dry skin.but able to work a bit and this help.But I find that remembering that there are a lot of people in the world a lot worse off that me.thats me done.

    Fred x

  • Thanks Fred, it's good to hear that you've had a good result, plus that you're able to work. I really hope that I get positive result, I think you're right about not doing too much. Hope you continue to get positive benefits.

  • Hello,

    I haven't had CImzia but I am on my third biologic drug, 2 of which have been anti-TNFs and all have really helped me - the first one to the extent that I was almost completely RA free for 5 years. I know not everyone is as lucky as I was but it shows that it is possible. The other two haven't been quite as good, but I am still massively better than I was before and better than I ever would have believed possible.

    Really hope the Cimzia helps you as much as the other biologics did me.

    Tillyx

  • Dear Tilly,

    This is so encouraging, I really hope I have a similiar response. Today I've handed in my notice at work which was only 1.5hrs a day as a play worker at a school. Even that has been too much, so if the cimsza can improve my lot it will be FANTASTIC!!

  • I have been on Cimzia for nearly 4 years and it transformed my life. Prior to taking it I was having flares every 6-8 weeks. Since being on Cimzia the only time I have had flares is when I have to stop taking it to have surgery.

    I hope you get the same good results.

    Jo

  • Dear Jo, wow. That's what I'm hoping for! I'll keep you updated. I'm so pleased you've had such a good response. Take care.

  • Hello

    When I had my first DAS score when I was being assessed for anti tnf it was 7.2. I was given a choice of three drugs, I have found out since that there is 5 to choose from but my hospital keeps to the ones that they are familiar with.

    I decided on Enbrel, I inject it once a week. I had a response the next day, I felt so much better. After three months of being on it my DAS score was 2.1, I was in clinical remission. Six months down the line I am nearly totally RA symptom free, I do get the odd bits of pain, I think it lets me know it's still there, but I have not yet had to reach for any pain relief.

    We went on cruise last week and I managed to wear shoes with heels every night and went to all the dancing classes on the ship. I can dance, I love to dance and it was wonderful to be able to do it again. Enbrel as given me my life back!

    I do hope that you have the same response that I have had.

    Good Luck

    Paula x

  • Dear Paula, oh, I'm so hoping to have a response like yours. I tried enbrel was getting a positive response, but, I had a allergic reaction so had to stop. 2nd time lucky, I hope! Take care.

  • Hi

    Well i had Remicade which is an infusion, unfortunately I had a bad reaction to it, then i had Enbrel and i felt fine on it but it didnt work for me. Then another three months and I got Humira, but then had to come off the drugs to have a spinal operation. So i just started back on it again and thinking it might be working!! And then we will both be getting better together!!

    Health care at home should come and show you how to do the injections which i find not too bad and easy to do. They also contact you to work out delivery dates. You keep them in the fridge ( think its the same for Cimzia) but of course you have to check.

    NRAS do a great booklet on Biologicals which is really informative and helpful.

    I do hope this drug works quickly for you as it is so hard to keep going isnt it. YOu will still get the blood monitoring like the other drugs so th generally say you will see the difference hopefully after 6 injections.

  • Thank you, you've had a journey to get where you are. Lets hope we both have a good response, and quickly. Race on! I found healthcare at home very good, I was on enbrel , but had an adverse reaction. Second time lucky! Take care.

  • May I ask what your reaction was and how long did it take to surface? I am just over six months into taking Enbrel and have just started getting an itchy rash. It is mainly on my arms but while I was away it also started on the bottom of my feet. It comes and it goes, I have been putting it down to the sun but I am not sure. I started taking Enbrel last November and we went to Spain at Christmas, it was quite hot for the time of year and I didn't have any reaction there. I also went away in April and we had a few sunny days then and it didn't happen. I am wondering if I may have a build up of the drug in me now, but I've always thought that it is a short lived drug in your system, that's why I went on it. I did slap factor 50+ suncream on and took anti histamines (didn't make any difference) while I was away but the cruise was in Norway, it was sunny, temperatures in the low 20's (yes, for those of you that's been there we were incredibly lucky), so it wasn't as if it was really hot.

    I do hope that it is prickly heat and it doesn't develop into anything serious. I would hate to think that I have to stop taking Enbrel because RA wise it's been a miracle.

    Paula x

  • Dear Paula,

    I'd had 3 injections, no reaction. 4th injection I had a rash, hot itchy and raised around the injection site. Next time I had injection, in my leg I had very itchy rash, raised and hot for about 5 days, much larger area this time.It was at this point that rheumy nurse said to stop. Had no rash after stopping. I think you need to chase it up. Especially if you're asthmatic.

    However a reaction to one doesn't mean you will react to another.

    Take care.

  • Also Paula,

    The effects started within 12 hours of having the injection.

    Hope this helps.

  • Thanks for replying Case, sorry I haven't replied earlier.

    I haven't had any rash at all to the injection site. Yesterday afternoon I was out in the sunshine, not for long and I started with it again on my chest. I've come to the conclusion that its got to be heat/sunshine related. Trouble is when I was away it wasn't really hot and I was putting on factor 50, I just dread to think what it would be like if it was really hot. My daughter lives in Gibraltar and we do go over in the summer to see her (granddaughters birthday is in September). You can't keep in the shade all of the time. I've got my next assessment in August so it will be on my list of questions when I go in.

    Good Luck again with Cimzia, fingers, toes and everything else possible crossed for you.

    Paula x

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