RA and breast cancer

Hi newbie here. I am reaching out as in such a distressed state I wonder if anyone else has been in my situation.

I have had well managed RA for 25 years been on meds for 24yrs. Up until Feb 24 was on Amjevita(adalimumab) for 15yrs and methotrexate (20yrs).

However I was diagnosed with Breast cancer in January. Have had very successful treatment. Lumpectomy and 5 doses of radiotherapy. Now on letrozole for 5 years.

I was told by Rheumatology to stop my RA meds until my treatment was finished but now they refuse point blank to let me go back on them. Which had left me with very reduced mobility and chronic pain having to live on co codamol.

They started me on prednisolone which has only added to the awful swelling. Apparently it'll be 12 months before they consider anything else.

I cannot find out why they won't let me take any meds. It's as though it's top secret! I cannot imagine what state I will be in in 12 months time.

To make matters worse because my inflammation markers where sky high I have had to go through tests for gastroscopy. Colonoscopy and cytology to rule out other cancers when in reality we all know what's causing the high inflammation.

Anybody else been in this situation? Grateful for any help and advice.

62 Yr old female xx

Comments

  • noddingtonpete
    noddingtonpete Moderator Posts: 1,250

    Hello @edsnan and welocme to the Community. We are a friendly and supportive group and I hope that will be your experience as well.

    There are a number of discussion on here about arthritis and breast cancer - I've put the search results below:

    Have a look through and hopefully you will find others that have been through something similar. I hope that you get some medication resolved for you soon. Please keep posting and let us know how you are getting on.

    Best wishes

    Peter

    Need more help? - call our Helpline on0800 5200 520Monday to Friday 9am to 6pm

  • stickywicket
    stickywicket Member Posts: 27,764

    Hello and welcome from me, too.

    I've had RA for about 65 years and I had breast cancer about 35 years ago. I do find your post a bit puzzling even accounting for the fact that things were different back then.

    For a start, I'd never had DMARDS other than penicillamine. So, when I was on post-op (mastectomy) chemo I was surprised at how good my RA was on chemo. I didn't know, back then, that methotrexate was a key ingredient of chemo and it was still a few years before I got it for my RA. (I couldn't have radiotherapy. My shoulder couldn't move out of the way!) After the chemo I was on tamoxifen for 2-3 years. Then I was clear.

    You say no-one has told you why yo-one is telling you why you can't yet go back on DMARDS. If you want to know do ask. My long experience of medics is that, if we ask questions, they will give answers. If we don't ask they will presume we don't want to know. Many don't.

    As for inflammatory markers, lots of things can raise them. Your team are being thorough in checking out possible causes. Just ask the questions. Any that you want answers to. And good luck.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • edsnan
    edsnan Member Posts: 3

    Thanks for your reply. I am finding my rheumatology dept very difficult to deal with at moment.

    Have now asked for 2nd opinion. Fingers crosse hey

  • frogmorton
    frogmorton Member Posts: 30,057

    Good luck @edsnan

    One of our other ladies who had breast cancer said the same now much better she felt with her arthritis while on chemo. She did have to wait a long time to get back on her normal treatment if i remember. Yes the inflammatory markers are indeed the same for arthritis as for other more worrying (after cancer) conditions. You have been through the mill and it must feel like it's still not over.

    I can totally sympathise with you wanting to stop those steroids (the bloating they cause the affects on sleep and appetite too) as soon as possible.

    I do hope the 2nd opinion helps and if you don't mind letting us know how you get on? It could definitely help someone else in future.

    🤞for you

    Toni x

  • edsnan
    edsnan Member Posts: 3

    I certainly will come back if I get any updates. Would hate anybody to go through the current pain I am experiencing.