Will effects of humira wear off?

tkachev

DD mentioned that Humira eventually stops working (I think that is what she said). Has this happened to anyone on this forum ?


I' ve been taking it for 22 months and everythng is fine although just started getting pains in previously R.A free fingers plus old wrist and shoulder pain.
I dont think I could bear going back to pre-Humira days.

Elizabeth

dreamdaisy

When I started the anti-TNF odyssey, my consultant explained that as with all drugs the body can become accustomed to the stuff and start fighting it, resulting in it losing its effectiveness. It can happen quite quickly or quite slowly - again we're all different! I've had 13 months on humira, my longest anti TNF treatment to date. Infliximab stopped after three infusions (about six weeks I think) and enbrel after a few months - can't remember exactly, maybe five. I have no doubt that humira will be the same ie start to lose its effectiveness - I just don't know when. I do know it won't work forever. None of these drugs do. They are toxic to the body and place a great deal of strain on other organs, as we all know due to the constant blood tests.

I was hoping that my pain levels would drop on humira, but they haven't. I was hoping that flares might become rarer events or even stop altogether whilst taking humira, but they haven't. Yes, my inflammation levels are in single figures and have been so for over one year now. That is a good thing, but I still feel like a bag of poo most of the time. That isn't so good. Never mind, that's arthritis and that's what it does. One just has to get on with it. DD

tkachev

I take it nobody has had reduced effects from Humira then ? Thats very good to hear.


Elizabeth

dreamdaisy

How do you mean, reduced effects? DD

tkachev

Starting off reducing the pain and then the effects wear off....I wondered if anyone had experienced this. I know some people dont get any or much improvement from some medication and have heard of
enbrel losing its effectiveness but never heard if humira does the same.
Just so I am prepared...


Elizabeth

dreamdaisy

It's never reduced the pain for me. It hasn't halted the progress of the disease - if anything it seems as tho its speeded it up. I'm still on two crutches - quite why I thought I'd lose those I've no idea. Wishful thinking can still strike after 14 years! I also thought I'd be able to stop some of the other meds - again, dream on DD. I think they are happy it's 'working' as my markers are in single figures, and I suppose from that point of view it is. I don't feel better tho. That is the mark of a drug that 'works', as far as I'm concerned. It's the steroids that give the fake better. And they're a damn sight cheaper! DD

tkachev

dreamdaisy wrote:

It's never reduced the pain for me. It hasn't halted the progress of the disease - if anything it seems as tho its speeded it up. I'm still on two crutches - quite why I thought I'd lose those I've no idea. Wishful thinking can still strike after 14 years! I also thought I'd be able to stop some of the other meds - again, dream on DD. I think they are happy it's 'working' as my markers are in single figures, and I suppose from that point of view it is. I don't feel better tho. That is the mark of a drug that 'works', as far as I'm concerned. It's the steroids that give the fake better. And they're a damn sight cheaper! DD

If you dont feel any better then its not really working. Ive asked to stop other medication in the past because I dont feel any benefit and they dont want to change anything but I feel I am taking some pills for the sake of it.
I am sorry to read you are still in so much pain and I feel they are failing you.
However despite the humira working I was still in lots of pain and struggled with toilets,dressing etc mostly due to my damaged joints(hip and foot). They wouldnt operate before due to the pain I was in and wanted to reduce that first. And I am still on crutches too due to the foot pain.
Steroids worked for me but I thinkl there is a limit on the amount they will give you,
Take care
Elizabeth

dreamdaisy

I think our expectations are too high. I've never felt better on any anti-TNF. They are powerful drugs but they are not cures. The side-effects wipe out any benefit. The last time I felt well was late October 2001, I can remember it quite clearly. By January 2002 I was on sulphasalazine and I have slid gently downhill ever since. I do reason, however, that life would be a helluva lot worse without the poisons, so I keep on jabbing and swallowing. DD

tkachev

Dont they swap to another anti-TNF if the one you are on is not working? I know their is a limit to how many they will try but I thought this had changed recently The results seem to suggest its working but obviously you are not feeling any improvement. I have read this happens to quite a few on the forum,
Take care
Elizabeth

kathbee

Hi Elizabeth

I am on Humira but a newbie as only started it in May this year.

I was taking Leflunomide with MTX for over 10 yrs and was getting
nowhere. Still have the oral MTX (12.5) with the Humira injections though.

I am keeping everything crossed that I improve, one has to be positive doesnt one. :roll:

I was told by my rheumy that even when my bloods show that the RA is not very active, my mobility and pain and exhaustion probs are from all the years of having RA and what its done to my body.
So not very nice really.

Hope you are feeling reasonable today.
Kath xx

janie68

Hi Elizabeth

The thing with anti-tnf's is that there is such a different point of view for people. Some have responded very well and are feeling wonderful, some get some response who get by but are still better. Some get no response at all. Remember it's an individual thing and you may continue to do well on it. Please don't get bogged down with the negativity of some people's experiences, this is not in your case.

Yes you can move onto different anti-tnf's, then you can move onto the other drugs too like for rituximab if you have RA. There are always new drugs coming out all the time.

I hope you keep well in humira

Janie

tillytop

Hi Elizabeth

So glad that Humira has been working so well for you! I understand your concerns that you are now starting to get pains again and the worry about going back to the way you felt before you started taking it.

My understanding is that, because of the way these drugs work, the body sometimes develops antibodies to the drug over time and it can therefore become less effective or sometimes an allergic reaction can develop. I seem to remember the consultant telling me that this was perhaps less likely if you were also taking methotrexate.

Hopefully this is not what is happening in your case Elizabeth but if it is, don't despair because there are potentially other options available to you. I don’t know how often you take Humira but it may be that if you are on the standard fortnightly dose, it can be increased to weekly. Just because one anti-tnf stops working doesn't mean that another one won't work for you. I had Infliximab for 5 years and it worked brilliantly for me until I had a sudden allergic reaction at the hospital. I thought my world had fallen apart because I couldn’t cope with going back to how I was before but then I was able to start on Humira, which also worked for me, but not as well as Infliximab. I took that for 2 and a half years before becoming allergic to that one too but I have potentially been offered either a third anti-tnf or an alternative biologic. I wasn’t taking meth alongside these drugs which could have been a factor in the allergic reactions.
So I would say try not to worry too much (it doesn’t help the RA!) but keep a note of what is happening so that you can report back to the consultant or speak to the rheumy nurse for advice if things don’t improve.
Love Tilly x

barbara12

Hi Elizebeth
Sorry I cant help with your question, I just want to say, I really hope it carrys on working for you.
Lots of very gentle hugs (((((((())))
Love
Barbara xx

dorcas

Hi Elizabeth

I was on Humira for nearly five years before it stopped working for me, or rather my body produced antibodies that stopped it working.

I began to suspect it wasn't working as well as it had been when my joints began to flare/ increase in pain and my inflammatory markers started to rise. My rheummy held off from stopping the Humira as he thought that the stress I was under at that time was causing the flare and would settle. After another three months he checked my bloods and with the markers still rising and 'new' antibodies agreed that Humira was no longer effective and stopped it.

I'm starting Infliximab on the 19th which is my third anti tnf (allergic to Enbrel) so fingers crossed it's effective as I am running out of options!

I really hope you get good results with Humira Elizabeth :!:


Iris x

tillytop

Hi Iris

Just to say so good luck with Infliximab on 19th! I'm (probably) about to start my third anti-tnf too but Infliximab worked brilliantly for me for 5 years (better than Humira) so I hope it works for you too. The other advantage of Infliximab is that because you have to go to the hosp for it, you get to meet others in the same situation which I found really helpful.

Will be thinking of you on 19th.

Love Tilly x


]

dreamdaisy

Humira is my third (and final) anti TNF. When I stop responding to it I have no idea what will happen. Anti-TNF treatments are based on mouse proteins. I appear to be based on cat proteins. DD

tkachev

Thanks everyone, I have been trying to reply all morning but have been constantly interrupted by children and cake baking so I can no longer concerntrate,
Firstly thankyou for sharing your experiences, i have become quite blasé about my humira and I just wondered if others had a long benefit followed by a deterioration. I know Lindalegs always advises not to worry about things that might happen but it does help to be prepared. Otherwise peeps are just going to say I am better now so I can just get on with normality. But 11 years of R.A has knocked my confidence.
Wish I could reply individually but son is talking to me non-stop!
:roll:
Elizabeth