Hello all, can anyone provide me with more info about... - NRAS
Hello all, can anyone provide me with more info about anti-tnf please? In particular about side effects and safety... Many thanks x
Hello
Are you interested in knowing about a particular anti-tnf - or just biologics in general? In terms of safety and side effects - well, like with most of the RA drugs, it seems that everyone is different in if/how they respond to the meds and, although they all seem to have a list of potential side effects as long as your arm, some people seem to get no side effects at all, whilst others struggle hugely with side effects. For some people the drugs don't help much and for others they can be an absolute miracle. Some people find that they become allergic to the drugs after a while, or that they just stop working. So I don't think it is possible to generalise.
But maybe my experiences will help to answer some of your questions.
I am currently on my third biologic, the first two (Infliximab and Humira) are anti-tnfs and Rituximab is an anti b-cell drug.
Infliximab worked brilliantly for me for about 5 years and was an absolute miracle! During that 5 years I went back to being able to live a completely normal life and, apart from complaints from the odd, already damaged, joint I hardly knew I had RA. Unfortunately I suddenly became allergic to it during an infusion at the hospital so had to stop. I would go back on it tomorrow if they would let me!
Humira worked almost as well for me - if I hadn't been "spoiled" by the Infliximab I would have thought it was fantastic. But the Humira began to disagree with me after a couple of years and I had multiple side effects and had to stop. But all the side effects disappeared once the drug got out of my system.
I have been on Rituximab for a relatively short time and the jury is still out as to how well it will work and for how long. So far so good though and, although I was nervous after my allergic reactions with Infliximab and Humira, I have, so far, had absolutely no problems with it - other than feeling pretty rough for a couple of weeks after the infusions (which is quite normal apparently) and coping with the side effects of the associated steroid infusions.
Hopefully some of this information will be helpful.
Tillyx
Hi,
I have been diagnosed with R.A. For nearly 8 years.
I am now on my second anti TNF, I didn't want to use them as I had all the booklets and information sheets and was really scared by all the side effects. The nurse told me they have to list all possible side effects even if only 1 person out of 50,000 users experience them.
After much persuasion I decided to try Enbrel, as it was the mildest of them all, I had to inject once weekly, the stronger the drug the less you inject.[ I also inject MTX once weekly, and take Sulfazalazine 3 twice a day, and Hydroxachloraquine 1 tab on a morning]. After injecting Enbrel I would usually get a headache and feel sick, the headache would usually go with paracetamol, and the nausea would usually go after a couple of hours. I was doing well until my 3rd injection, when I got a reaction at the injection site it was about the size of a 50p it went after 3 days, after my 4th inject it was the size of a tennis ball, so I phoned my nurse and she said it wasn't anything to worry about and I could take piriton. The piriton didn't really work but ice did, as the reaction was red hot and really itchy. On my 5th inject the reaction started straight away, and was the size of my leg! I called the nurse and she told me to take piriton 3 days before my next inject and 3 days after and pop in and show her the reaction. I went and showed the reaction, she told me not to inject anymore as I was finding it really uncomfortable,
The nurse said I could try another TNF Simponi which is injected once a month, I had to wait 4 weeks for the Enbrel to get out my system which was a shame as I had started to feel less stiff and less pain. After a space of 8 weeks I started on Simponi,
Safety aspects as TNFs surpress your imune system, so we are more likely to catch infections and viruses, I was told to distance my self from people with mumps, measles, chicken pox, and people with colds and flu, which as we know is virtually impossible, I was also told to stay away from sea food, pate and poor quality chicken.
I still feel a little sick and get a headache after injecting, but I do it on a nite so I can sleep through it. I am feeling so much better, I have had 2 injects so far, I brought a bike and now go out for rides 3 x a week I don't get hardly any morning stiffness, and I can even stand on me tip toes which I havnt been able to do for 6 years! In my experience the benefits out weigh the side effects. Just make the most of each day as we all know it can be taken from you any time without warning.
Sorry if I have waffled on a bit hopefully I have helped you a little, if you have any questions feel free to ask, hope all works out for you let me know how you get on.
Take care
Narna74
Hello
NRAS have a booklet which gives really clear information on anti-tnfs including possible side affects and safety. It is thorough and very clearly written and might be a good starting point for you.
It can be downloaded along with the update which should be read in conjunction with the booklet. If you have trouble doing this just ring their helpline and they will send you a copy. NRAS Helpline 0800 298 7650.
