BC and Rheumatoid Arthritis

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Hello, I was wondering if there is anyone else out there who has the double whammy of BC and RA to deal with?  I've had RA since I was 6 (I'm 44) and was on Methotrexate and Humira, which worked really well, until my diagnosis, when I had to stop the Humira.  I also stopped the methotrexate while I was doing chemo as it didn't seem I needed it (either the chemo or the cortisone was keeping it under control) but I live in a damp and wet climate and the RA is showing its face again. I can't use Humira again (and who knows, maybe that's one thing that brought the BC on?). I'm not sure how to best manage it and am so tired of the whole thing and having to worry about these things all the time...  It's severely interfering with my life!

I was wondering if anyone else has experience with managing these two diseases at once, and what you're doing?  I have a MO and a rheumatologist, but neither of them are experts in the other field, which is not so surprising.  But perhaps someone out there is.  If anyone has any advice to offer, or just wants a sympathetic ear from someone who's going through the same thing - I'd love to hear from you. Thanks!

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  • Alyson
    Alyson Member Posts: 4,308
    edited January 2012

    Hi Lucy I know exactly where you are coming from. I have RA ( since a teenager). As you can see I am five years out and treating the RA has become a real problem. Sorry I can't be of much help but I am happy to 'listen '

    I too took methotrexate prior to dx, hve not been able to have it since chemo as the side effects were severe. Since have tried several things but react. these days I take Brufen and painkillers. Have had flare recently which is taking time to subside.

    Do hope you are feeling a bit better.

    Sending gentle hugs

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Thanks Alyson! 

    I didn't have many side effects on methotrexate but I hated it - it felt like poison and I felt it afterward in my mouth like a miasma - of course little did I know that THAT poison would be far less than the other stuff down the road, but oh well.  I'd like to take a little break from chemo meds for a while and I'm hoping I can put off starting it again though I've had some flare ups recently and I know it's only a matter of time.  Sigh.   My doctor mentioned a B-cell inhibitor (the name of which I'm forgetting at the moment) which sounds pretty hard-hitting so I'm hoping I don't have to start it.  I just want a break from all this.  Ah well we all have our cross to bear... Gentle hugs to you too. :-)

  • judyr
    judyr Member Posts: 61
    edited January 2012

    Hi Lucy,

    I have both as well, but I was DX with the RA after my breast cancer tx. It took a while for them to figure it out, as the oncologist was the one I saw most and she went right to thinking bone mets. Finally, she suggested a Rhuemy and there you have it!

    I'm on Methotrexate 8 weekly, Hydroxychloroquine and Diclofenac for it. I do pretty well with that. Each time I see her, she waivers on whether to do something diffrent, but there are not as many choices I think with our history. Also, I'm just feeling like I'm functional again and I don't want to mess with a good thing! 

    I'm surprised that not more people have chimed in. I would have thought that more women would have this combonation of illnesses.

    Gentle hugs back!!

    Judy 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    Thanks Judy and sorry for the delay in responding!  I was on hydroxychloroquine for a while as well, and it worked for a while but not when it got really bad, when I went on Humira (which I can sadly no longer take).  The only good thing about plaquenil (hydroxy etc) was that I lost weight - if you read the list list of side effects "anorexia" is one of them - I certainly wasn't anorexic but I did lose my appetite. I'm glad that works for youan hope it continues that way.

    I just saw your "tagline" - how did you manage the cancer when you were pregnant? Oh my, how awful.  And having cancer AND RA with a baby - I assume that's your baby in the photo? - it's really hard with just one of these diseases and a small child, let alone two.   RA zaps so much of your energy and I actually almost found it worse than chemo, which at least had a beginning and an end.  With RA you never know when you're going to have a flare.  At the moment I'm ok, I had my knees drained a few weeks ago and knock wood nothing has flared since then.  But I know it will at some point, it's just a matter of time.

    Thanks for your thoughts and gentle hugs to you too!

  • Provetgal
    Provetgal Member Posts: 2
    edited July 2012

    I was diagnosed with Breast cancer at age 33, 15 years ago...now dealing with recurrence at age 49, and recently also diagnosed with Rheumatoid arthritis...at least clinically.  Will get results of lab work in next couple of days...but the joint pain in my hands, wrists, elbows, and toes is so much more debilitating than the breast cancer ever has been.  At least there was an end to the chemo and radiation and I was still able to work during it all, but now with the joint pain, I cannot even open a door or jar...difficulty walking and I used to be a marathon runner, tennis player and zumba enthusiast!  This is so depressing...I thought dealing with Breast Cancer recurrence was bad, but this is so much worse.  It has taken away the "quality" of my life.  I will see what the rheumatologist recommends, but from all if have read, everything has side effects...lymphoma, liver damage, etc.  There is no easy answer.  I am thinking of stopping my breast cancer treatments, and opting to treat my RA since that is what is debilitating me.  I don't want treatment for both.  I feel I have put so many poisons into my body chemo, radiation twice (15 years ago, and again last year), Faslodex, Tamoxifen for 5 years.  I cannot believe that this is my life...I am alive...I have a wonderful family...I know...but is isn't easy...never easy.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    Hello,

    I'm so sorry to hear of what you're going through.  I know, it's really hard sometimes! I too hate the idea of all this poison ALL the TIME, and I wish so much there was a way to avoid it all.  I'm currently having a flare up - I think mainly due to the horrible weather in New Jersey, 94% humidity! Killer! - and also possibly from the ten lbs I've put on from the tamoxifen.  I eat next to nothing but can't exercise bc my knee is as big as a very large grapefruit and my metabolism is in the toilet from this drug.  The inability to move as I want is very, very frustrating and is severely affecting my life, no to mention my greatly looked forward-to summer vacation!

      I was just reading about possible food triggers and I'm going to try to cut some things out and see if that helps.  Unfortunately all the studies point to different things so it seems to be quite individual.  I've recently become almost a vegetarian, which was helping, I think, though I'm now staying at my parents house and it's hard dictating everyone else's diet so I've been eating things I probably wouldn't otherwise, if given the choice, just to be a good guest.  I read that shrimp can be a trigger and I did just have a fair bit of shrimp, and then my knee ballooned a day later.  Coincidence?  Possibly.  Who knows??? It's worth a try. Though some of the things they recommend for RA - like flaxseed oil- seem to bepotentially bad for BC.  There is no easy answer, but I'm going to give it a try.  My only option right now is the IV-type treatment, since the methotrexate doesn't seem to be helping and I can't take Humira.  

    What does your oncologist say about you stopping the BC treatments?  I find that thought very scary, to be honest, though I completely understand where you're coming from.  Does the chemo not help with the RA symptoms?  Have you tried cortisone?  I found that worked but it made me gain lots of weight, which is discouraging, adding insult to injury.  But if it gets you through the BC treatments, then perhaps worth a shot if you haven't tried it?  Humira was also like a magic potion.  I miss it...

    I've been living with this for many years now and have been lucky enough not to have any liver problems or anything else.  I hope that's not coming down the pike, but I can't worry about that now, just try to take care of myself and deal with what's on my plate at the moment.

    I feel for you.  It's a hard disease to have as many people don't understand how debilitating and exhausting it is. You say you have a wonderful family, so do I, and I want to concentrate on that and enjoy what's good.

    Take care of yourself, and all the best wishes to you.

    SL

  • Shrek4
    Shrek4 Member Posts: 1,822
    edited March 2013
  • 1Athena1
    1Athena1 Member Posts: 6,696
    edited November 2012

    Hello everyone,

    Sorry for intruding here (and apologies for the fact that is s a repeated post). I have petitioned the moderators to separate the mixed typed of bc threads from the bc and other illnesses threads, since both situations are entirely different. If you agree, read here and post your opinion:

    http://community.breastcancer.org/forum/93/topic/795779?page=1#idx_13 

    I am making a perfect nuisance out of myself by being so pushy, but I do feel it is important. Comorbidities create an entirely different bc experience for many of us - one we frequently cannot discuss with others who are not in our situation.

  • kriserts
    kriserts Member Posts: 224
    edited May 2013

    hi all, I had BC about six years ago, and was recently diagnosed with RA. I haven't gone on any drugs yet, because I'm doing fat grafting for reconstruction, and my PS thinks methotrexate, etc., would ruin the fat grafts. So I have time to think about this, but .... I would prefer to try a biologic, because my father has RA and speaks highly of remicade. Are breast cancer patients not indicated for biologics? My RA doc says if my BC is in remission, it's fine. But my oncologist, whom I haven't spoken to lately, seemed to indicate that with two positive nodes, I may not be a good candidate. Thoughts? thanks.

  • MusicLady
    MusicLady Member Posts: 28
    edited September 2014

    I got psoriatic arthritis 4 years ago. I'm posting here since PsA is the "other" auto-immune arthritis and is treated very similarly to RA.  When I was diagnosed with BC last Aug. 11, I had to get off Enbrel (a biologic) for good, my rheumy said.  He explained that once you have a cancer dx, that you can't ever go back to Enbrel.  Enbrel had worked like magic for me (along with Methotrexate at early onset) and I went from being crippled with walking well in just three weeks, and eventually, I could even return to tennis, where I had used to play competitively.

    Now, I'm wondering how long I can get away without treatment for PsA.  My rheumy says that I need to "take care of my BC first", then he has a different biologic he wants me to try (don't know which one).  I was wondering how other BC patients who go off treatment for RA or PsA manage their arthritis symptoms.  Thanks and best wishes to all.

  • kriserts
    kriserts Member Posts: 224
    edited October 2014

    As a followup to my post above, there was confusion with my oncologist, and she was worried about Enbrel causing leukemia (one of its possible side effects). She emailed with other doctors and they agreed it was ok to go on Enbrel. So it's interesting to hear your story, MusicLady. Enbrel has given me my life back--last year I couldn't ride my bike, now I'm back to cycling long distances and hoping to compete again next season. 

    In about six weeks I'm going to have to go off Methotrexate and Enbrel for six weeks while I go through another fat grafting procedure. I am NOT looking forward to the return of the pain.

  • BLinthedesert
    BLinthedesert Member Posts: 678
    edited October 2014

    hello Kriserts,

    I have been told (and the Enbrel package insert suggests) that there is a slightly higher risk for lymphoma and non-melanoma skin cancers (I have assumed this is for all the TNFalpha inhibitors).  There is nearly 15 years of follow-up data now on Enbrel, so I personally feel pretty safe that it does not increase risk for breast cancer ... and, I am with you -- it is my saving grace.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    I was in the clinical trial for Enbrel 11 years ago and developed a life threatening illness. Ten years later almost to the day, I was diagnosed with BC. I am no longer a candidate for Biologics. When going through chemo, my RA went into remission. My MO didn't want me taking the RA drugs while doing chemo. My RA doctor had a different opinion. I went with the MO's opinion. I'm am currently taking Plaquenil, Celebrex and Azulfidine which doesn't come close to controlling it like Enbrel did. My RA doctor said they are working on a medication that can do the same as Enbrel without lowering your immune system. I think it's in trials now. I'm no longer a candidate for trials due to my history. I know some people on Enbrel that have never had any problems. I guess everyone is different.

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    I was Dx with Reactive Rheumatoid in '96, so I have had it for about 18 years.

    I did 7 years of Methotrexate injections every week, that I administered myself and also tried the just about everything else available,at the time, except Biologics. Embrel cost $80K per year, when it was first brought into Australia, but even as the price dropped, I didn't want to take it, don't really know why, just a gut feeling.

    I have managed to keep my RA under some control, with low dose cortisone and alternative therapies. I have suffered with bone density issues caused by my choices, but they haven't deteriorated in about 12 years, I can't tolerate the bone meds, I've tried the yearly infusion and the weekly tablets which caused dreadful stomach pain. I have lots of issues with meds and bad side effects. I have had hand and wrist surgery, which removed the synovial sacks around my knuckles and the tendons were split and redirected to strengthen the hand and knuckles. Although I had some issues after the surgery, and a long recovery, it has been a success and really positive thing to do.

    I was one of the fortunate ones who had a Dx of DCIS that didn't change with final Pathology. I did have to stop taking the supplements in the lead up to my Mx and I did feel the RA waking again, but I have been lucky that it hasn't returned to full force.  

    I wish everyone dealing with RA and BC treatment the very best. There are many of us here, who have a Rheumatoid Dx. The other Cormobidity thread has a lot of information from others with the RA Dx.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Ariom, when you had your wrist surgery, were your wrists frozen? Mine can go up, but not down. Just wondered if yours were frozen and wondered if the surgery helped with range of motion?

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    Hi SlowDeepBreaths, when I had the wrist surgery, I had very little range of motion. I could lift a little and go down a little, but it was always really painful. I haven't had the same issue with the other one, even though it is my dominant hand. The surgery cleared up all all of the issues I had in that wrist . I haven't had any problems with it, since then and I have great range of motion now.

    The tendon reassignment in my hand, was amazing surgery too. Although I wasn't sure at first,  I am so glad that I did all of the surgeries, because they turned the RA around, in my hand and wrist. I was so over having to have steroids shots just to be able to function. I worked for an International Airline at the time, so overweight  bags and  passengers in wheelchairs were something I had to deal with, every day.  My husband is a quadriplegic in a wheelchair too, so having unstable hands and wrist was dangerous. I had to do something.

    If you are considering having this kind of surgery, I would urge you to find out exactly what it entails and the recovery period etc. my hand was a very, very long process, but the wrist was about 6 weeks, which included PT exercises etc.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Ariom, My rheumatologist talked about surgery many years ago. Then I developed some other things that put that way on the back burner. As I lose more and more mobility, I think I may look into it again. Most of my problems are wrist related not as bad in the fingers. It's especially bad after treatment.

    It's so good to hear that the surgery worked for you!

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    Good luck with whatever you choose to do!  I know what you mean about losing the mobility, mine was more pain related, although the mobility was definitely a problem for me too. The surgery removed both problems for me. It has been almost 10 years and I haven't had any more problems with either of them.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Thanks for the info Ariom. 

    May I ask what alternative treatments you did for your RA? No longer being a candidate for the Biologics, I'm starting to run out of options.

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    Hi SDB, I take Lyprinol by Blackmores, which is green lipped mussel extract, there are other brands of this, but I have been told that they are not as stable as the Blackmores and the dose can vary quite a bit. I have taken the Blackmores for many, many years and on the occasion that I take a break from it, I feel the difference. I still take cortisone every day, which has caused me no end of trouble with stomach ulcers and thinning bones, but I manage on less that 5mg a day now. I try to adjust the dosage down, but for me, the first thing I will get is a frozen shoulder if I drop too low. Tumeric, Fish oil, Olive leaf extract and Vitamin D are in my daily regime and I get as much dense nutrition from a morning meal replacement called VeganSmart with Green Vibrance in it. They both have pre and pro biotics in them as well as digestive enzymes. I prefer these, to taking synthetic lab vitamins.

    I will still get the occasional flare of RA, but nothing like it was in the early days or before the surgeries. I also use an Aromatherapy Essential oil blend which is an analgesic, for pain. I have been having a massage every two weeks for the past 18 years or so, as a therapy for the RA as well as Meditation and occasional Acupuncture.

    This has helped me much more than when I was on the weekly Methotrexate, Plaquenil, Anti Inflammatories etc. I know it isn't for everyone, but I have found it helps me. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Thank you so much! I've written everything down and I will research it all. I have had awful side effects through the years with all of the medications. It's encouraging to hear of your success with alternatives.

    I'm really thinking about acupuncture, but I have such an aversion to needles after contracting Nectrotizing Fasciitis from an injection into a hemorrhoid. I was on Enbrel at the time. But I've heard so many good things about acupuncture controlling pain. One day I'll work up the nerve to try it.

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    You're welcome! Just take it a little at a time, you will find what works for you. I always railed against the heavy weight drugs. I didn't want to take them, if I could avoid them. I had my Rheumatologist pulling his hair out at times, but he is also very alternative therapy minded, albeit as well as, the heavy meds so he did understand my aversion. There was a time that he actually said to me, he thought that I had improved, because I simply ignored the RA and refused to acknowledge it. LOL

    I wish you all the very best and hope you find things that work for you. It is a rotten, nasty disease!

    Edited to say... The Acupuncture, for me, wasn't like any normal needle as such. I have tried a few different Acupuncturists and they do really differ, so if you go to one, try to get a recommendation from someone who has been to this person and really like them. I had one woman who was sensational, but she moved away and I couldn't see her any more. I can't recommend massage highly enough. I went to the same woman for about 15 years and then I moved away. The woman I go to now is not quite as good, but I still get the great feeling and fluidity of muscles and tendons from this lady. Add the anelgesic properties of the essential oils and it is a very powerful modality. Good Luck! and feel free to ask me anything, if you want to, PM me.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2014

    Ariom, such great information - thank you!

    I agree about the medications. I would always cut whatever was prescribed to me in half. I tried so hard to protect my liver. I know my Rheumatologist gets frustrated with me, but I've been seeing her for 33 years and she's quite used to me by now.

  • Ariom
    Ariom Member Posts: 6,197
    edited October 2014

    You're welcome, I hope some of it helps you too! Glad you have a Doctor who listens too.  M x

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited May 2015

    I agree that was nice to know, Thank You

  • Peanut_cutie_2571
    Peanut_cutie_2571 Member Posts: 1
    edited June 2015

    i have m.s and have been through breast cancer.after my surgery 3yrs ago the right side of my breast is still sore .it seems that the soreness is going to my left. I'm so scared my cancer is coming back.how can I tell ? Please help me with answers Dr told me months ago he didn't feel anything .I don't know why my chest is sore .Ty so much

  • footprintsangel
    footprintsangel Member Posts: 43,890
    edited June 2015

    Mine is too because I have R arthritis, some people have pain

    like I do its normal, I have sore spots from the surgery

    some days and it is lymphedema, from the surgery Peanut..

    Please let me know how You are doing.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Peanut, I have the same thing and I know many others that do too. They did testing on me and haven't found anything. They tell me the pain is my RA, aggravated by going off chemo. When I did chemo the RA went into remission. If you have concerns please talk to your MO.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Hi everyone, back after a few years on the topic I started!

    I just wanted to give an update on what's happening with me, if it can help anyone. I stopped drinking milk about a year and a half ago and it has made a world of difference to the RA. At least I think it's the milk, it could of course be a coincidence, but I haven't felt this good since I was 5. I'm down to 3x2.5mg methotrexate a week and just went off plaquenil as well. Hope that doesn't trigger anything. I know this is all very personal, in how each body reacts to things, but it really seems to have worked where nothing else - apart from biologics - did. I still eat some cheese and a little ice cream when necessary, but I used to take half a cup of milk in my coffee and now use almond milk instead (almond milk takes a lot of water in production but still as far as I know not as much as a cow). I really don't miss it at all. Since we are limited in the treatment methods we can handle it's good to know there are potentially easier and non toxic alternatives. Good luck to you all.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2015

    Thanks for update LucyL - that is great news. I am so happy to hear you are feeling much better!!

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