STOPPING HUMIRA

tillytop · 23. Apr 2010, 04:31

Hello,

Does anyone know how long you can continue to feel the benefit of Humira once you stop taking it? I have just had to stop Humira due to an allergic reaction and I have been told that I have to wait until 10th June to be seen at the hospital Anti-TNF clinic ( 7 weeks away). I take no other drugs for my RA at all and I am worried that I will be in a really bad way by the time my appointment date arrives. The hospital don't seem concerned and have just said that, if necessary, I should go to my GP for a steroid injection.

Pretty desperate so any advice would be welcome.

Thanks!

dorcas · 23. Apr 2010, 05:32

Hi tillytot,

I have PA and had to stop taking Humira beginning of March (well it had stopped working for me) and have to wait until I've had an op in June before I get to start another anti tnf infliximab.

Meantime, like you I've been told by rheummy that they will try to keep arther at bay by giving me steroid injections. I have needed extra meds and have already had an IM steroid a few weeks ago and although arther isn't under control it's just about manageable.

I do take other meds though...pain relief, night time meds and DMARDs so my situation is different from yours.

I know Humira stays in your system after you stop taking it (same as other antitnfs and other meds) so time is needed for it to 'clear'.......but I don't know how long it takes, sorry!.
7 weeks doesn't sound too long but it will feel like an eternity to you and it's understandable you're worried.

Why not talk it through with the helpline peeps who may know more about it? they are great and will be happy to help.

how do you feel? are you in pain just now? if so phone rheummy dept or see your doc today and ask for pain relief.

bottom line.....you should not be left to manage pain so don't be afraid to ask for help.

Iris x

snowball · 23. Apr 2010, 06:46

tillytop wrote:

Hello,

Does anyone know how long you can continue to feel the benefit of Humira once you stop taking it? I have just had to stop Humira due to an allergic reaction and I have been told that I have to wait until 10th June to be seen at the hospital Anti-TNF clinic ( 7 weeks away). I take no other drugs for my RA at all and I am worried that I will be in a really bad way by the time my appointment date arrives. The hospital don't seem concerned and have just said that, if necessary, I should go to my GP for a steroid injection.

Pretty desperate so any advice would be welcome.

Thanks!

Hi Tillytop I have r/a and was on the anti-tnf and had a very bad allergic reaction to it, I had to wait about 5-6 weeks before I was put on another one. But I also take methotrexate, leflunomide and antinflams pluss pain killers. If you are flareing go to your gp and see if he will give you a steroid injection, don't suffer and wait for rheumy.
Good luck and I hope you have better look with the next one, please let us know how you get on.

Julie x

dreamdaisy · 23. Apr 2010, 10:20

Hello Tillytop. I'm very new to this site (my first post in fact) but i do have experience of stopping anti tnf treatments - i'm on my third type! The time they take to clear varies from person to person as does the time they take to kick in, if they're going to. Try not to focus on the fact that your treatment has stopped and support yourself with any other meds that you have. If you feel a flare is coming on, contact the support staff at your hospital or GP clinic and get the help you need. Sometimes nurses etc can seem a little offhand about the patient's concerns about stopping or starting meds, probably because they deal with so many people. My rheumatology department is the fastest-growing one in my local hospital! I have found over the years of PA that it is very hit and miss, finding the right combination of drugs that work for you - it takes time! Take care over the next few weeks, try not to over-exert yourself and good luck with your hospital appointment. Dreamdaisy.

dorcas · 23. Apr 2010, 10:32

Hi dreamdaisy!

Nice to see you posting! and welcome to the forum. Hope you'll enjoy being part of the 'gang' and soon feel right at home.

Iris x

dreamdaisy · 23. Apr 2010, 11:45

Hello Iris, thanks for the warm welcome. I stumbled upon this site yesterday and am very new to the whole posting and chatting stuff. I have had PA since 1997, only diagnosed in 2006 and am currently struggling with it. It's good to find fellow sufferers out there, 'cos no matter how understanding friends and family try to be, they just don't know what it feels like! Hope you're ok at the moment. Have to go now - work beckons. Dreamdaisy.

dorcas · 23. Apr 2010, 12:18

It's good you found us!

there are lots of peeps on here with PA and you will find a heap of support and advice any time you need it. It's a great forum.

Post as often as you can...it helps you to feel part of the community and it's always good to share what's happening with arther and to support others. It's also a good way of finding out more about the disease.
As you say...there are times when friends and family don't or can't understand but here you can be sure that peeps do.

This is my first venture into forums too...and I'm now well and truly hooked.

hope work is OK for you..

Iris x

dreamdaisy · 23. Apr 2010, 12:48

Hi again. Work was reasonably ok, I work as a private tutor for dyslexics. It takes my mind off stuff, which is good, but sometimes it lessens my patience - but never to the point of grumpiness, dyslexia is equally hard to live with and lasts forever! At least I reached the grand old age of 38 before it all went wrong.

I have spent time browsing the other topics etc and the wealth of info is truly astounding. I hope that I will have something to offer - mine has been a long and tedious journey and the PA still isn't sorted - but then why do I think it will be? At least I have found a way to reach others in a very similar boat to mine!

I'm going to post another topic then it's off to start dinner - can't get used to cooking sitting down but that's the way it is tonight! The chardonnay will help, tho. Have a good week-end. Dreamdaisy.

tillytop · 23. Apr 2010, 13:46

Hello and thanks for your posts!

It's encouraging to know that there are others on their second or third Anti-TNFs too! Humira was my second Anti-TNF (had Infliximab for about 5 years before allergic reaction meant I had to stop) and I am hoping I will get a chance for a third try (Enbrel has been mentioned as a possibility).
I would have been due for my Humira today so not yet really missing it. For me the most worrying thing is being left not knowing what the options are in terms of future treatment. I have been so lucky in that my RA has been very well controlled on Infliximab (best) and then by Humira and I really, really don't want to go back to the way I was before these "wonder drugs" came along!
I am going for an appointment with the Rheum Nurse on Monday so hoping to get a bit more info then.
Thanks again for your replies and you friendly welcome to the forum.

snowball · 23. Apr 2010, 14:08

tillytop wrote:

Hello and thanks for your posts!

It's encouraging to know that there are others on their second or third Anti-TNFs too! Humira was my second Anti-TNF (had Infliximab for about 5 years before allergic reaction meant I had to stop) and I am hoping I will get a chance for a third try (Enbrel has been mentioned as a possibility).
I would have been due for my Humira today so not yet really missing it. For me the most worrying thing is being left not knowing what the options are in terms of future treatment. I have been so lucky in that my RA has been very well controlled on Infliximab (best) and then by Humira and I really, really don't want to go back to the way I was before these "wonder drugs" came along!
I am going for an appointment with the Rheum Nurse on Monday so hoping to get a bit more info then.
Thanks again for your replies and you friendly welcome to the forum.

Hi Tillytop I was given 2 anti-tnf's and had a bad reaction to both, this past year I've been on Rituximab which has now stopped working, so we are applying for funding fir another drug called Tocilizumab.
Good luck for Monday and do let us know how you get on.

Julie x

tillytop · 23. Apr 2010, 14:55

Thanks Snowball - what a merry-go-round this drugs lark is!
I so hope you get your funding for Toclizumab - and that you don't have to wait too long.
Just out of interest, did you have a definite one off allergic reaction to your 2 anti-tnfs - or did you have a lot of drug side effects as well? Reason for my question is that I have been really poorly over past year with apparently unrelated health problems which I have felt all along were probably to do with the Humira (nearly all are now llisted as common side effects). But none of the docs I saw (including rheumatologist) would even consider that Humira was the cause :roll: . It was only when one side of my face swelled up out of the blue last week, that the GP contacted the rheumatology dept and they said to stop the drug (even then they thought it was more likely to be a dental infection but dentist has today given me a clean bill of health thank goodness!)

Thanks for your post!

c4thyg · 23. Apr 2010, 15:57

I had a really resistant infection over xmas and didn't inject humira for 2.5 months! It was only really the last 2 weeks (ish) of that time that I felt I needed pain relief.

I know we're all a bit different but I felt that Humira stayed in my system a lot longer than Enbrel. Enbrel seems to switch off over night for me and is actually why I'm going back on it. I couldn't get over the infection until Humira stopped working and I'm not supposed to have antibiotics unless life or death!

Hopefully you'll find that you'll be ok without Humira for a while. However, for me it also tales about 3 injections to get back into my system!

Good luck, I hope it all goes well for you.

STOPPING HUMIRA

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