Sjogren's and Breast Cancer.: Hello everyone. I don... - LUPUS UK

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Sjogren's and Breast Cancer.

bones-bones profile image
4 Replies

Hello everyone. I don't post here much now but I need some help. I have had Sjogrens and/ MCTD for some years. I was diagnosed with an aggressive form of breast cancer in December. As I was having Chemo I had to stop taking Mycophenolate which was fine. When I finished Chemo I had an appointment with my Rheumatologist ( this was only the second time I had seen her) she told me to stop Hydroxychloroquine since at that time I didn't have any joint/muscle pain and the fewer chemicals I have in my body the better. Now a few weeks later my knees are very painful. Of course I then realised that I had been given steroids with the chemo. Should I just start Hydroxychloroquine off my own bat ? I am finding it difficult to contact her.

My MRI was clear and I am on Herceptin.

Sorry for rambling and slightly off topic post. But perhaps someone out there has been in the same situation.

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4 Replies
Serser profile image
Serser

Hi bones-bones,

Bless you you’ve been through the mill!

I think everyone on here would agree that it’s probably safer to check with either your rheumatologist, the team that is caring for you regarding your cancer or at least gp before starting back on the hydroxychloroquine. Mainly because different treatments have different contraindications and side effects that could potentially knock you further off kilter if the mix is wrong.

Also you’d need to discuss a what dose to start back on as that may have changed as you haven’t been taking it, and also due to the chemotherapy.

I hope you start to feel better soon!

Xxx

AgedCrone profile image
AgedCrone

If you can't contact your Rheumy at least contact you Rheumy nurse, your GP or better still your oncologist as you are on Herceptin & you should not add any drugs off your own bat unless oncology give you the OK.

I remember when I had breast cancer my oncologist was most insistent I didn't try any OTC remedies, so I'm sure you should ask before just taking Hydroxy .

Hope you get some advice soon.

bones-bones profile image
bones-bones

Thank you for your sensible replies. My Oncologist told me to contact my Rheumatologist. I tried but no luck there. Will keep trying.

Ladyuponthelake profile image
Ladyuponthelake in reply to bones-bones

Hi Bones,

Really sorry to hear your going through Breast Cancer treatment. Have been there too and feel for you, for all the difficult emotions you've gone through as well as the physical pain. How are you in your spirits? Do you feel emotions or illness worsened Sjögrens and MCTD? I know I was never as tired as after final radiotherapy and it could have been autoimmune disease magnified by trauma.

Can I ask how your under arm lymph nodes are? Clear?

Did your Oncologist say anything else besides to check with your Rhuematologist? Just sometimes little things are said that we forget.

Wishing you the very very best! If you need to chat, feel free to PM 1🌻💟🌻❤

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