RA and breast cancer

[Wwoo]

I had been taking Mythotrexate for about ten years and I was fine with it, although I did get some bad headaches. To shorten a lengthy story, I was diognosed with breast cancer in February 2019 and was very lucky to have an operation the following month, but in a private hospital as the main hospitals were very busy with Covid. I then had to have a course of radiotherapy and was told I had to come off of Methotrexate as the treatment could have an adverse effect on my skin if I continued with the RA drug. My breast was sore and swollen from the radiotherapy for some time, but I have been off Methotrexate now for about a year and feel ok, apart from stiffness when getting up and some joint pain.

I don't feel I want to go back on it yet. Is that the right decision. My RA nurse said let her know when I am ready to go back on it, but am I right in not doing so and is my body going to regret it in the long run. No sure.....

[MoniqueB]

Bubmin, I'm very sorry to hear that you were diagnosed with breast cancer in 2019, but am pleased to hear that you've finished your cancer treatment. I'm not sure if any of us can tell you what's the 'right' decision.

Can you speak with a rheumatologist to discuss your RA treatment plan? A rheumatologist has likely dealt with patients who have been in a similar situation and likely has more information than your nurse. For example, when I was having an allergic reaction to one of my drugs, a nurse commented that it wasn't possible. As a result, I contacted my rheumatologist who confirmed that I was indeed having a reaction. That said, the majority of nurses that I've consulted with have been very informative, but sometimes it's a good idea to get a second opinion from an RA expert.

[Wwoo in reply to MoniqueB]

Thanks MoniqueB will speak to my RA when I can get an appointment to receive a phone call 👍

[Azzure]

Hi Bubmin

I am sorry that you have been through your illness and I hope that the cancer is gone for good!

I can only give you my experience of stopping methotrexate when I had COVID-19. I didn’t take my injections for 4 weeks until I received a negative result, which they said could take up to 3 weeks to come back negative. I take 22.5mg each week.

I wanted to discuss with my Rheumatolgy consultant whether I could stop for good as I know being on methotrexate my immune system is somewhat suppressed. He did say to me even though you have been ok for a few weeks it will eventually come back. I did deep down know he was probably right.

I decided to start back my injections because I can’t risk my RA damaging my joints or organs long term. Even though I felt ok I knew what my consultant said was right, my RA would eventually come back. However, I do have in the back of my mind that methotrexate could be damaging my liver or lungs over the long term, but I have to have faith it won’t. I have read there are health benefits to the heart being on methotrexate, and I do believe that because I feel so well taking methotrexate.

I hope this is Helpful.

[Wwoo in reply to Azzure]

Yes it's a difficult decision, I don't like taking something that suppresses my immune system, and I feel ok, so I will have to have a chat with my RA consultant further.

[AgedCrone]

I had breast cancer whilst on Mtx....& had no skin problems.....but we are all different so do be guided by your personal medical teams....both Oncology & Rheumatology..... you have beaten the cancer.....but you still need to treat the RA don’t you? It is very tempting when you don’t have many RA symptoms to think everything is OK..but if your rheumy thinks you need to take a Dmard....... I’d listen to him. If you really don’t want to take methotrexate why don’t you ask if you could take a different DMard ?

Hope you get back on some sort of RA treatment very soon.

[Wwoo in reply to AgedCrone]

Thank you for your advice 👍

[Durrell]

Hi Bubmin sorry to hear how poorly you’ve been but sounding as if your doing really well now. It’s your body & if you don’t feel ready to restart MTX then don’t, do it when & if you are ready. I followed the natural path for quite sometime & didn’t take MTX throughout that time. I have returned to modern medicine & for me it was the right time. I am now on a biologic & MTX, they want to put me on a higher dose but as an injection weekly rather than oral, I’m struggling with this myself as they’ve upped my dose & I’m experiencing horrid headaches, I’m putting in a call tomorrow to say this dose is to much for me so either I stay lower or I’ll come off it. I hope this is helpful but importantly it’s your body, you’ve been through so much these past 18months, I’m lucky my Rheumy will always say to me “you have got to be comfortable with the drugs you take” ... All the best Bubmin talk with your team for all options etc 💐

[Wwoo in reply to Durrell]

Thanks Durrell. I was wondering whether I am doing any long term damage by not taking any medication to suppress my RA. My RA adviser said that I was in remission, but that was 6 months ago. I think I had better talk to her again. Best wishes to you 😀

[Durrell in reply to Wwoo]

That’s a real consideration to take onboard, in fairness that’s why I returned to modern medicine as I have moderate to severe RA & it was spiraling out of control, with a constant chronic daily flare, thankfully all settling down now. Yes keep talking with you RA team, they have a wealth of knowledge & experience at their finger tips, all the best

[RheumST]

I'm sorry but I was prescribed Methotrexate for a type of Rheumatism, whereas what you had (hopefully it is gone) is cancer. I suppose you know that the Metho was originally chemo for cancer but with a much higher dosage, hence the frightening side effects. For Rheumatism the dosage is much, much lower and the side effects are therefore far less.

As for the effect with respect to skin. I developed some low level psoriasis according to my dermatologist which he said was from longer term Prednisone, and also told me that Metho would get rid of it since it was one of the drugs used for psoriasis. He was absolutely right, it is gone.

I'm very lucky because I have not had any negative side effects from the Metho, but needed far more time to taper off the Prednisone than I expected (including the brief addition of Sulfasalazine). I'm also fairly certain that the the Sulfasalazine was responsible for a short term altered with flavor perception (taste & or smell) which I heard about here. Some foods tasted weird. Once I got off the Sulfasalazine, flavor came back to normal.

I'm a scientist, not a doctor, so I can't say anything really smart about going back on Metho.

Here is my reasoning:

(1) you said you did not have any serious problems with it, in the past right ?

(2) You now have some joint pain issues, right?

(3) Sounds like Metho and Radiotherapy don't get along when administered at the same time because of some negative interaction. Alone they appear to work.

(4) Your RA nurse appears to think it would help to get back to it. You need to figure out where the reluctance to start Metho again comes from, because you did not clearly say why (ah, after reading your replies to other comments I see that you are worried about reduced immune system. It's a trade off, like most things in life)

So, logic would dictate that you should discuss the issues in greater depth with her. Perhaps you could get on a smaller dosage than what you had in the past ?

Best of luck,

Dan

[Wwoo in reply to RheumST]

Thanks for your helpful reply Dan, I suppose overall I hate taking tablets, but as we get older it seems inevitable. I am now on Anastrozole for five years to hopefully stop my cancer from returning. No side effects apart from some bone pain in my arms. I will discuss it further with my RA adviser. Many thanks Wendy