Tocilizumab

[Noni71]

I have had a BCC removed from the side of my nose. One of my rheumatology nurses told me that there is an incidence of Tocilizumab causing cancerous growths. It did pop up out of nowhere and I was shocked when the dermatologist told me that it was a slow growing cancer. Has anyone heard of this link? The rheumatologist has referred it to the medicine team at the hospital. It hasn’t been a very pleasant experience and would like to find out more about this before the rheumatologist tells me to resume my injections.

[SheffieldJane]

I think I have read that skin cancer is a rare side effect of Tocilizumab, due to the body being unable to search and destroy cancer cells efficiently, when the immunity is suppressed, it is not recommended for people who have ever had cancer.

The other thing is any abdominal problems such as Diverticulosis. It is likely to worsen the condition. I ended up with Diverticular disease after a year of Tocilizumab. I am glad that I got off the high doses of Pred for GCA quickly with the help of Toc. I did notice a lot of infections eg UTIs, nasal and eye infections - still hard to shift after over a year. You need to talk to the prescribing doctor about the personal risks to you.

[Noni71 in reply to SheffieldJane]

Thank you. I’ve never had cancer before and I’m sure the rheumatologist did explain the risks to me before I took it but I didn’t absorb all of the info. I’m down to 5mg with the help of Tocilizumab and Methotrexate but both have given me side effects which have not been very nice. The whole experience of GCA has been more traumatic than I ever imagined!

[SheffieldJane in reply to Noni71]

I agree. I felt that I managed PMR quite nicely but GCA has been a confusing challenge - probably because I had already had Pred for four years and my GCA is non cranial so the symptoms are not clearly defined. The drugs of course and the co-morbidities. Also, to be honest, I am fed up with it. 😐

My doctor, son in law has set up a skin cancer clinic in Australia. It seems to be almost routine there. You get a funny mole and make an appointment at a clinic and have it analysed and removed. I am covered in funny moles and wart type things. I wonder if he’ll do mother in law rates for me? It would be a bigger palaver in the U.K. I imagine.

I don’t regret taking Tocilizumab. It really reduced my steroid burden.

[SnazzyD]

BCC is very common and you could well have got it anyway, especially if you’ve had a lot of sun exposure at some point, which is why they often crop up on the face. If you are going to have a skin cancer, it’s the one to have because the likelihood of spread is very small and removal is usually 100% effective if the excision depth is right. As a nurse I used to see them a lot, especially in those who liked the sun, keen gardeners, sportspeople or lived/worked abroad. Old servicemen stationed overseas often presented with them on the tops of their ears or nose. Yes, it is an unpleasant experience, but don’t let the word ‘cancer’ frighten you into a panic. These ad campaigns have a lot to answer for. Leaving inflammation uncontrolled is deadly, so one BCC wouldn’t put me off TCZ but I agree it doesn’t feel like much of a choice if it’s you!

knowyourskin.britishskinfou...

[Noni71 in reply to SnazzyD]

Thank you so much for your positivity. Much needed at the moment!

[Charlie1boy in reply to SnazzyD]

Hi,

Think that was a really good reply. Seems every drug has a side effect, but it is important to get such issues into perspective.

[PMRpro Ambassador]

I'm not entirely sure I would take the nurse's comment as gospel. I have looked for studies on the matter and found very little. It also makes a difference what underlying disease is being treated with tocilizumab - there is an increase in malignancies with tocilizumab used in RA but not above what is to be expected in patients with RA, NMSC (non-melanoma skin cancers) are also usually excluded from such studies so there is not a lot of data to be found.

However, a very recent dermatology study concluded

"The skin cancer type with the greatest number of medications associated with increased risk was BCC, with 26 risk-associated drugs. The greatest risk was associated with azathioprine (reporting odds ratio [ROR], 23.15), followed by infliximab (ROR, 20.65), hydroxychloroquine (ROR, 18.85), ustekinumab (ROR, 12.95), and rituximab (ROR, 12.92)."

dermatologyadvisor.com/home....

There have been claims that the risk of BCC is raised when pred is used - and counter-claims that show the risk is not significant when other confounders are taken into account. The same seems to apply to tocilizumab and one study said there was no increased risk in the RA patients when it was used for less than 2 years. In my experience, some specialist nurses hear half a story - and say some unsubstantiated things.

As Snazzy says - BCC is very common and it is very difficult to say it was due to this or that. I wouldn't ditch my tocilizumab on the basis of one BCC.

[Noni71 in reply to PMRpro]

Thank you for that detailed reply. I agree with you about not ditching the tocilizumab as it's really helped me to taper down to 5mg of Prednisolone.

[jarn]

Interesting. I did report about a year ago that I was noticing strange lesions (??) on my limbs (strange somewhat blistering patches) and wondered if it related to Tocilizimab, so I did stop the injections and have not had any since. Coincidence? So have just stuck with low 2.5mg Pred. Am not fond of injesting any more pills than necessary. Not sure if this relates to your dilemma. Thank you for posting the info.

[Noni71 in reply to jarn]

There are so many side effects to drugs that we can’t know them all. I don’t have time to do lots of research so we just rely upon the experiences of others to inform us. I’ve developed high blood pressure and high cholesterol since embarking on medication for GCA.

[DorsetLady PMRGCAuk volunteer in reply to Noni71]

You don’t have to do ‘a lot of research’ but you can read the patients information leaflet - raised blood pressure and cholesterol levels are listed as possible side effects…as are a myriad of others