My rheumy nurse says that with successful anti-tnf I should expect to be pain free and lose the mornimg stiffness.
I am on Cimzia fortnighly injections. Will inject this week, week 8 of being on this drug. So far no changes in symptoms and very slight changes in bloods.
What do you think bloggers and blogettes is it gonna work or do you think it would have done by now?
Sue x
I started Enbrel around same time as you I am on week 9 and I too have no improvement, just a slight change in my blood results, I am really upset about this I really was hoping for a miricle drug that was going to ease my pain and stiffness.
It makes me wonder though can that be right about being pain free, how can we become pain free if damage has already been done, me feet are crooked, toes ect, some days it feels like I am walking on broken glass and hot coals at the same time, and my knees, fingers etc all have some damge so how can we be pain free?
I am still holding out hope though if only for it to halt progression of the RA because the past few years it has progressed to bad its unreal, and I know there is loads out there ten times worse than me.
Maybe one off the bloggers who have been on anti tnf for longer can help.
Take care hun xx
Julie xxx
I was on Enbrel for over 10 years and it was like a miracle drug I had to wait 3months for it to build up in my system but once it did I could do all the things I wanted within reason it was magic but after 10years my body got used to it and it didn't work so well, I persevered for some time after but in the end had to change, I have been on a few since then and have just started abatercept hopefully that will work just as well.
Good luck hope it is magic for you!
think the 3 month rule applies to biologics too?.. Im not on them some one who is please comment.. think accordding to gina benefits are huge?? sure Lyn-w who is our expert patient on ra can help...
I know about meds but ra is a big learning curve for me due to having the disease.. I can speak from a personal rather than professional prospective.. was wondering why my comrades at work !! bit unsymapthetic.!!. most know naff all about RA no workshops or e learning modules on it !! aagh.. Im learning about the hard way!!. I going to a workshop on bowel disease.. and i might go to one on weight management.. they have them on cancer and pallitive care etc..??
Summer, can I suggest you contact the NRAS itself as they have many booklets which you can obtain. When I was diagnosed 3 1/2 years ago, I obtained a booklet which I gave to my employers as no one at my office knew much about RA either. They did find it very helpful. I also got a booklet for my husband to read which he found very useful. (At the time I was in a wheelchair!).
I am also on Enbrel and have been for the last 18 months - I still get flare ups mainly in my shoulders, elbows, wrists, hands and feet. Because I was diagnosed later in life I do not have a lot of damage to my joints, fortunately. I don't think with jt damage you could ever be completely pain free but it can be brought under control. I also find a combination of 200mg of Neurofen and 1000mg of Paracetemol is very effective when the pain is very bad. My RA consultant also recommended 400mg of Neurofen. But do watch the stomach and only ever take it after a meal. I am certainly not in remission as such but I do have periods of time when I am relatively pain free and can function normally. i.e. gun dog training, walking, (can't run any more), cycling, and generally having a normal life etc. Before the Enbrel I was on Humira for about 16 months but it caused some side effects such as a rash on my legs so I was changed to Enbrel. Lavendar Lady
have got some and I am going to do a post on other usedful reading material im a member of nras.. best thing I ever joined .. thank you x
Hi,
As you know I am on Humira and have found benefits great compared to mTX & Plaquinil . I have to say it does not correct damage has only stopped further damage. I cannot honestly remember how long it took, I was put on predneselone at the same time. I can say now 2 years later I am off steroids, pain killers and diclofenic & tum protectors. I still take mtx 20 mg & plaquinil. I still get achy days & some tiredness but generally am OK. I got on the anti tnf relatively quickly (within a year) from diagnosis maybe that helped. Looking back now I actually had it coming on much longer. I was initially diagnosed with palandromic arthritis, as different joints boiling up every day! it was nearly a joke (not) which joint would be next! Turns out was bog standard RA in the end 
Good Luck with Cimzia, have faith, I hope you are on a combination of Dmards as well as this works best apparently. xxx
Hi Sue, I'm on Rituximab and that takes almost four month to get to work for me, other people are different. I think they may give you a few more weeks and then if your not happy say so I would.
That's the trouble with all these drugs, a waiting game and not a very nice one when your in pain.Hope it starts to work for you soon I really do because if you try something else it's waiting all over again and its so frustrating.
Good luck Sue, take care
Mandy xx
Hi,I started with symptoms almost overnight Feb 2010, Jan 2010 i was living life in the fast line, going to the gym 6 times a week and busy, busy, busy. I was finally diagnosed in july and stated on methotrexate, then they added hydroxychloraquine, then sulphasalazine, several steroid injections and with nothing working and a spell in hospital started on Cimzia about 3 months ago. I am certainly feeling a difference. Its gradual and slow so iv'e had to look back to realise that I am improving ! My CRP is the lowest its ever been and do have less stiffness andless pain but lethargy is still a big problem. I was told that if I wasnt showing signs of responding after 12 weeks, I wouldnt and they would stop it. So keep going and look back to when you were assessed prior to starting and see if there's a difference. This is my first time of blogging so Hi to all, and good luck !
Hi Cherry
Congratulations on your first blog, hope it's the first of many.
Thanks for your response you are the only other person so far on Cimzia and your info has helped I will wait a while longer, three more injections before the twelve weeks so see how it goes. Take care
Sue x
welcome cherry its alson aka summer here.. good news re cimza
Good luck Cherry Im playing the waiting game too. Was diagnosed in October been in hospital twice since then. Waiting for Mabthira/Rituximab ( the one Mandy also has above)
At least we are in it together
fiona xx
I've just had my 58th or 59th infusion of infliximab. It did make a difference, I dont have too much joint damage, but I still have pain and fatigue quite often - but not debilitating as before. It did start to work quite quickly - they began by giving infusions on a 2-weekly basis, but I was still pretty sick.
The main improvement for me has been since I stopped work and moved to Scotland. Perhaps (thinking of another comment in the weather related blog) it was moving to the windy north compared to the damp Thames Valley. Perhaps it was leaving the stress of work behind, being able to rest when I needed to.
But my advice would be to do what you can to help the anti-TNF work - namely take it easy in the day following the infusion. I usually have a nap and try not to do anything too demanding. It is heavy duty stuff, but not like our own special favourite MTX!!
Hi Sue
I started infliximab 8 weeks ago and so far no improvement! If anything Im worse and my GP has signed me off work for the next month to give the infliximab the best chance of working..
Like everyone I hoped this would be a miracle drug, I think we have to give it a few more weeks, fingers crossed and good luck!
Love Ceri x
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