stopping humira after cancer: Hi all. I stopped humira... - NRAS


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stopping humira after cancer

Girtonian profile image

Hi all. I stopped humira while I had a breast cancer op (lumpectomy) and 3 weeks of radiotherapy treatment this August/September. My rheumatologist now says it is contraindicated to go back on humira, especially as I also had endometrial cancer in 2014. The cancers were unrelated and fortunately dealt with now. Interestingly, the breast cancer people say that humira would not cause that type of cancer. I have been on humira for 17 years - I started off in a trial in June 2001 and carried on. I have never taken methotrexate, on the trial it turned out I had the placebo. Currently I'm doing ok, just a little swelling in my hands. Has anyone else been taken off humira due to cancer? Should I have put up a fight? My rheumatologist spoke only of 'protocols' rather than specifically about risks to me as an individual. He said there was an 80% chance my RA will flare up again and then he suggests trying Leflunomide or Sulfasalazine. If I try both of those but don't get on with them Rituximab might be possible - but what a difference - infusions in hospital rather than self-administered injections at home. I feel pretty down thinking about these options. I would really welcome to hear from anyone who has been in a similar position to me. Thanks.

12 Replies

I don't have any personal experience to help you - and you have had tough luck so far! It's good to hear that you are getting on with sorting out what to do with your remaining problems.

It might help to have a look at the treatments pages on NRAS and see which ones you might be able to use in the future so that you are fully informed when you next see the rheumatologist. I always find that it is so much easier to have a discussion from a position of knowledge so that you don't waste time discussing things that you already know are ruled out.

Girtonian profile image
Girtonian in reply to oldtimer

Thank you oldtimer, that's good advice.

All I can tell you is I had BC/RT back in 2003...& this is me.....might not work for you.

I was then 4 years diagnosed with RA & on SSZ, that failed & I went on Mtx very successfully for 7 years. Then tried other Dmards inc LFL.....all failed.To be put on RTX you need a high DAS score to qualify & get funding so hopefully you will be controlled by LFL or SSZ & not need RTX.

I have been on RTX since 2016.

You don't actually go "in" to attend a unit attached to a hospital for one day 4 times a year. (One infusion then 14 days later another one - every six months) Your infusion can vary from 5 to 7 hrs, depending on how you react to your first infusion.if you react well it can end up being just once a year.

It has worked really well for fingers are firmly crossed it carries on working forever!

Hope that puts your mind at ease. Personally I prefer it to taking pills every day, or weekly/monthly injections...but having to experience the high DAS score to qualify is in my opinion best avoided if at all possible.

Girtonian profile image
Girtonian in reply to AgedCrone

Thank you for sharing your experience. What is DAS score?

Girtonian profile image
Girtonian in reply to AgedCrone

Thanks again, I googled DAS score and see what it is now. I've been well for so long I haven't had to do any of these things for years. The thought of going back to active disease feels like a big black cloud on my horizon. I guess I should try to think positive and make the most of the fitness I have for now.

AgedCrone profile image
AgedCrone in reply to Girtonian

As I remember I had no obvious RA side effects after my BC surgery. I certainly don't recall it made me any worse. I drove myself to RT every day for 6 weeks about 6 months after the surgery....& my shoulders,arms wrists were my worst affected joints.

Have you spoken to your oncologist...or has he/she spoken to your Rheumy?

I developed what appeared really bad hip pain about 3 yrs after BC & was sent back to oncologist by Rheumy. Turned out Tamoxifen was the culprit...eroding womb lining....referred pain to hip. As I was perfectly clear cancer wise, oncologist stopped Tamoxifen, pain disappeared & I'm still OK.

I'd talk through things with both oncologist & Rheumy & politely suggest they get their thinking in sync!

As you say think positive. I'm a right Old PollyAnna......I just deal with everything as it happens...not much else to do really!

I wasn't allowed to take any anti tnf drugs for RA until 5 years after my breast cancer I think it's standard procedure.

AgedCrone profile image
AgedCrone in reply to

That was maybe because you managed to stay on Tamoxifen or Anastrazole for the full 5 years?

By coincidence a close friend was diagnosed with breast cancer a couple of weeks after me-so we could compare treatments, and although we had the same type and size of tumour our treatment was completely different-but we both ended up absolutely fine.

We both took our own doctor's advice & thank goodness, both continue to be cancer free.

Sorry to hear of your recent health problem, but hopefully now on the road to recovery. I was advised to have Rituxamab after removed of small skin cancers, in comparison nothing like you have gone through. I am on Humira and decided to stay on it. This was two years ago. Humira is an anti TNF, Rituxamab is a different biologic, acting on the B cells and is used in cancer treatment. I would give NRAS a ring to discuss how the latter will work for you. As you have already been on a bio med you should qualify without going through a DAS assessment. I didn't have to. All the best. X

Hi I have been taken off all rheumatoid medications due to having ovarian cyst that held cancer cells and was the size of a football caser, i was told if this had burst it would of most certainly turned into invasive cancer and it could of been terminal . This was after taking embrel injections for 6 months . I took nothing for 2 years then I was persuaded to go on leflunomide this gave me polpips within my bowel I had bleeding every time I passed a motion , i had a colonoscopy where they removed a cancerous polip that had started to turn cancerous. I was stopped all medication for rheumatoid. My GP told me not to take any of these medications as they all can cause cancer except methotrexate. I spoke to my consultant who denied this at first but put me on methotrexate due to me having cancer. Unfortunately I had severe side effects and had to come off that, i went back to my consultant and he told me he couldn't put me on any other medication as my doctor was right in what she said , in that all the other medications could cause cancer in some patients, i asked why he denied it before he replied we are not suppose to say. So I have now not taken any meds for my rheumatoid except my pain killers and he said he can give me steroid injections to help every 6 to 12 months . Yes my rheumatoid flares up and I have bad days and really bad days but at least I haven't got cancer. So be very careful in what you take and think long and hard about the next meds you agree to go on. Hope this helps you . Soft hugs hun xx

Thanks so much for sharing your story. This does put things into perspective. Like you I have had 2 lucky escapes from cancer. I suppose it's not worth the risk with the RA treatments. But if the pain and disability get really bad it's a hard choice. Interesting that in your case the leflunomide caused the polyps. That must have been scary. The human body is an amazing thing, we don't realise how amazing until things start to go wrong do we? I suppose we must be thankful for everything that still works well, and for the relatively carefree times before RA started. I have found a gluten free diet makes a huge difference for me although I realise it might not help everyone.

Hope your diet helps you and you get some kind of relief, I eat fresh healthy foods and have cut down on dairy products I drink lots of water and some fruits . I have to be careful with my diet as I have very bad reflux and part of my swallow action has been lost due to reflux acid . So I'm quite careful in what I do take and what I eat . My pain is severe some days and because I have a high sensitivity to pain relief I use a tens machine voltarol cream and acupuncture and just rest as much as possible till the flare dies down, in extreme cases I have the steroid injection , i think they used to be called gold injections years ago. The hospital has finally gave up on me and said they can't help me anymore due to me having cancer twice. So I bear it best I can .Hope I've helped but as I said not everyone is the same everyone's different . Soft hugs xx

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