Cancer messes up RA treatment: I've had RA for 50 years... - NRAS

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Cancer messes up RA treatment

sibilant profile image
12 Replies

I've had RA for 50 years (started at age 15) and was brilliantly controlled until 2 years ago. I was diagnosed with cervical cancer last March and had to stop all RA drugs (adalimumab and methotrexate). Treatment took months, during which I was lucky and had no serious flare-ups, and finally I was allowed to restart the methotrexate last November. It was a godsend as my hips were extremely painful by then.

I was finally prescribed tocilizumab (you can't take anti-TNF biologics after cancer) this spring, but it immediately started suppressing my white blood count. All summer I underwent periods of coming off the toci, waiting until my WBC rose, restarting and watching it plummet again. I've now been without a biologic for months, as the consultant won't prescribe an alternative without seeing me, and appointments are like gold dust.. My WBC is still low and I'm in a lot of pain, plus awful fatigue following a nasty bout of flu. I suppose the moral of this tale is don't get cancer when you're reliant on biologics, but that's easier said than done!

Has anyone experienced similar? If so, what biologic did you find effective?

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sibilant
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12 Replies
Gitaga profile image
Gitaga

HiI was diagnosed with breast cancer this year. I had to also stop the biologics (Amgevita) and Rhemalef for the whole period of the operation and radiation. My Rheumatologist has now put me on Ristova. Apparently this is also an anti cancer drug. It's given twice a year via a drip.

I still have flare ups but its all manageable. I take prednisone for flare ups.

Hope this info helps

sibilant profile image
sibilant in reply toGitaga

Thanks Gitaga, hope all goes well with your treatment.

Gilliancheche profile image
Gilliancheche

Am also 57 and female, I have melanoma. I am on COSENTYX which after an initial 3 months or so works well for me when combined with MTX. I have had an occasional flare but not for a while now 🤞. As I understand it there are several biologics that are not anti tnf. Hope you find a solution soon

sibilant profile image
sibilant in reply toGilliancheche

Thanks Gilliancheche, I think there are several biologics I could try if I could see the consultant! Good luck with all your treatments.

Evie3 profile image
Evie3 in reply tosibilant

I saw my Consultant privately as I was desperate …cost about £250 and then I reverted to NHS. Take care

stbernhard profile image
stbernhard

Hi sibilante, I battled with bladder cancer for more than three years and recently had my bladder and lots of other bits removed. I'm still on an Anti-TNF. Did you have Chemo or radiotherapy? I didn't. Maybe that's the difference.I hope you find a biologic that suits you.

sibilant profile image
sibilant in reply tostbernhard

Stbernard, sounds like you've had a tough time, hope you're doing well now. I had chemo and lots of radiotherapy, which mucked up my blood chemistry. I'm sure I'll eventually find a treatment I can tolerate, just a shame that I'll be in pain over Christmas.

AgedCrone profile image
AgedCrone in reply tosibilant

Ask about Rituximab…I had cancer with lots of radiotherapy & have been on Rtx very successfully for 7 years.

After all…at much higher doses Rtx is used as a cancer treatment .

sibilant profile image
sibilant in reply toAgedCrone

Thanks AgedCrone, that was one of the options when I was prescribed Toci. I wish I'd chosen Rituximab now! I'll definitely ask about it.

welsh12 profile image
welsh12

Bless can your gp not push for an urgent appointment its difficult enough dealing with one condition. Could you have a private one. Get a idea of a date so you mentally prepare.

sibilant profile image
sibilant in reply towelsh12

Getting through to the GP is a nightmare! But thanks for thinking about me.

welsh12 profile image
welsh12 in reply tosibilant

Yes I know awful need to take my own advice too. Put it off as its difficult.

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