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Topic: Now diagnosed with rheumatoid arthritis, but I'm not convinced.

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

This is a place to discuss concerns, tips and strategies for all types of side effects from all types of medications and treatments, (chemo/rads/hormonal/targeted/pain meds/etc.

Posted on: Sep 7, 2011 07:29PM

thankful4life wrote:

I've been having severe joint pain and assumed it was from the Femara. I had switched PCPs, and the new PCP did lots of blood work. My rheumatoid factor was very high, so she went me to a rheumatologist. He also did blood work; again, my rheumatoid factor was very high. He did x-rays on my hands and hip.

Now he has diagnosed me with rheumatoid arthritis. I asked him if he thinks the Femara could be causing all of my joint pain, and he said that since I have such a high rheumatoid factor it can't be caused by the Femara.

The rheumatologist said he thinks the rheumatoid arthritis was caused by the trauma to my body (the cancer itself, 5 surgeries and then being hospitalized 4 times this summer). But my oncologist said she's never heard of that.

I have been on a break from the Femara for 5 days (will have a whole 6-week break - yay!!) and the joint pain has gotten less, although it is still there.

Anybody else with breast cancer also diagnosed with rheumatoid arthritis? Thanks!

Sherry - Age 48 at diagnosis; ILC, IDC, Paget's, Lumpectomy on 11/18/2009 w/out clear margins, BMX w/free-TRAM reconstr.01/05/10; hyster/ooph 03/29/2010; Femara Dx 10/28/2009, ILC, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 8, 2011 04:36PM dlb823 wrote:

Bumping for Sherry...

Deanna "The soul would have no rainbow if the eyes had no tears" Native American proverb Dx 2/1/2008, 1cm, Stage IIA, Grade 3, 1/16 nodes, ER+/PR+, HER2- Dx 1/3/2014, Stage IV
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Sep 9, 2011 06:38PM Claudia413 wrote:

I'm a 4-yr survivor of IBC (Inflammatory Breast Cancer). I've been on Arimidex/Anastrozole since the summer of 2008. I have incredible joint pain and have thought "rheumatoid arthritis" several times. Of course, my doctor says Arimidex wouldn't cause RA. I take it with a grain of salt because this doctor is the one who said I didn't have enough symptoms to have IBC (I only had one symptom). In one of my online support groups, several women have also asked this same question. I'm sure that down the road we'll all be proven right. After all, we seem to know more than the doctors most of the time. 

Claudia Fauver (IBC Class of 2007) Dx 8/10/2007, IBC, Stage IIIB, 0/3 nodes, ER+
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Sep 9, 2011 08:19PM thankful4life wrote:

One reason he said I have rheumatoid arthritis is that my rheumatoid factor is high. I have been researching to see if Femara can cause an increase in rheumatoid factor, but so far I haven't been able to find anything.

Sherry - Age 48 at diagnosis; ILC, IDC, Paget's, Lumpectomy on 11/18/2009 w/out clear margins, BMX w/free-TRAM reconstr.01/05/10; hyster/ooph 03/29/2010; Femara Dx 10/28/2009, ILC, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Sep 9, 2011 08:28PM grneyd5600 wrote:

I sort of have the reverse problem.  I started having severe joint and bone pain after the Taxol was done and starting Arimidex.  We stopped the Arimidex for 10 days with no improvement so he sent me to a Rheumotogolist.  They did lots of blood work and xrays.  No indication in bloodwork that I have RA but he put me on Clinoril (anti-inflammatory).  Told me to excercise as often as I could and he would see me again in (3) months.  Well, in the meantime I had a reason for a chest xray and CT scan and they found nodules on my lungs.  When I saw the RA dr again he said that RA can cause nodules on the lungs so he would be curious to see what those results say.  Anyway, they are treating me as if I have RA and we are trying to handle it with excercise and Clinoril.  I get frustrated because I feel like I take a pill (Clinoril) to take a pill Arimidex but what is a girl to do! 

Jackie Dx 3/26/2010, IDC, 2cm, Stage IIIA, Grade 1, 4/22 nodes, ER+/PR+, HER2-
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Sep 10, 2011 10:56PM thankful4life wrote:

I also have a nodule in my lung; I've had several scans on it, and it hasn't grown any, so now I'm only going to get annual x-rays of it. And my doctor never told me that RA can cause lung nodules. I think it's so frustrating that different doctors tell us different things.

Sherry - Age 48 at diagnosis; ILC, IDC, Paget's, Lumpectomy on 11/18/2009 w/out clear margins, BMX w/free-TRAM reconstr.01/05/10; hyster/ooph 03/29/2010; Femara Dx 10/28/2009, ILC, <1cm, Stage IB, Grade 2, 0/4 nodes, ER+/PR+, HER2-
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Oct 31, 2011 05:19PM carriedel wrote:

I am 44, and just had my breat biopsy for potential breast cancer.  I also have been having severe joint pain and just got the call that my RF was 77!  I have always been very healthy, and have no family history of either.  There MUST be a correlation of breat cancer and RA.  I don't think it is the medicines causing the RA, since I have not been on ANY meds yet for either disease!  Anyone else have the RA/breast CA link??

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Oct 31, 2011 11:28PM cycle-path wrote:

Here's an article about arthritis and estrogen that I think is worth looking at:

www.rxpgnews.com/arthritis/New... 

also: www.everydayhealth.com/rheumat... 

I am an Uppity Woman. Don't like my posts? Put me on IGNORE. Dx 12/10/2010, DCIS, 1cm, Stage 0, Grade 2, 0/2 nodes, ER+/PR+
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Dec 20, 2011 12:48AM gailyp wrote:

Hi, I am 52 years old and  also have rheumatoid arthritis (diagnosed 1.5 years ago and have been on plaquenil).  I was just diagnosed with breast cancer in 11/11 and recently had a mastectomy.  I also question the link between RA and breast cancer.  I would love to hear further comments and concerns.  My rheumatologist claims their is no link between plaquenil and breast cancer but it is just too coincidental that I was diagnosed a year after I started taking it.

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Jan 4, 2012 08:37PM CB949 wrote:

I am extremely interested in this group....just stumbled on this!  Healthy most of my life and in the last 7 years diagnosed with severe asthma, 2 years later at age 55, Rheumatoid Arthritis and last August (2011) with breast cancer.  Lumpectomy, 33 rads and arimidex.  Having worst flare up since diagnosis and extreme fatigue.  Pushing to exercise.

I want to find a doctor interested in pursueing the link between auto-immune disease and cancer.

As an aside, I was told there was no problem having radiation with RA - WRONG!

Has anyone found any research or clinical trials taking place?  

Stage 2 IDC 8/8/2011; 33 rads; arimidex
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Jan 13, 2012 07:58PM gailyp wrote:

Hi,  I wrote the post above yours and am also very interested in the link between RA and breast cancer.  I am an exercise fanatic doing weighttraining, kickboxing, yoga, step etc.  It seems to coincidental to be diagnosed with RA and then a year and a half later diagnosed with breast cancer.  I am in the pharmaceutical industry involved in clinical trials.  I am going to try and look into this and will let you know if I find anything.

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Jun 9, 2015 06:00PM Yosemite-Kris wrote:

I had Stage1 Breast Cancer with a lumpectomy, and radiation. Then took Anastrazole for 6 months. Things were going smoothly until after the third month. Then all hell broke loose. Constant hand pain, tendinitis, joint pain, trouble getting up from a chair, excruciating heartburn with reflux, insomnia, fatigue, and frequent hot flashes. I felt really old and was miserable. I have been on a medication holiday for two months. I am feeling better, but still have some hand discomfort, tendinitis, shoulder pain, and bouts of insomnia. I had lab tests done come back that were positive for RA. When they were rechecked a month later, the RF factor had doubled. I'm in shock. I am a healthy active woman. I too was wondering if the potentially new diagnosis of RA was caused by Anastrazole.

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Jun 9, 2015 06:28PM nannettem wrote:

I barely made it through 3 weeks of Femara. The 3rd week, I felt like I had the flu!....joint, muscle pain, etc. I stopped, then within days, it was gone. I'm now dealing with nausea on the Tamoxifen....

Nan Dx 3/23/2015, IDC, Right, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 4/9/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Hormonal Therapy 5/13/2015 Femara (letrozole), Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Feb 18, 2016 01:24AM comingtoterms wrote:

Greetings!

I just returned from my first visit w a rheumatologist due to ongoing pain and an elevated RF. I learned that chemo (A/C/T) and the trauma of BC surgery can cause autoimmune reactions, including a permanently elevated RF. It does not necessarily mean that you have RA. I'm doing a whole lot of blood work and will post again to share the outcome.

Tammy

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Feb 18, 2016 02:29AM gypsiqn wrote:

Ugh I know the feeling. My blood work has been haywire andy body pain and joints even worse. Not to mention the chronic LD flap pain still after a year and half. Tested positive on ANA so now more tests to see if it's lupus or RA or what. Bone scan showed arthritis in both feetand hands which was not there on first bone scan. God help us all...

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Feb 28, 2016 04:59PM comingtoterms wrote:

Hi everyone,

I just wanted to post and let you know that all of my extensive bloodwork ordered by a rheumtologist came back normal except for an elevated RF. I do have Osteo in my foot and have an appt. to see a podiatrist for that, but apparently this RF response is not uncommom in women who have gone through chemo/radio for BC. If anyone has more info in terms of recurrence rates based upon this I'd love to know more.

Dx 1/9/2009, DCIS/IDC/IDC: Tubular/IDC: Mucinous/IDC: Cribriform, Left, 2cm, Stage IIB, Grade 2, 1/27 nodes, ER+/PR+, HER2-
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Mar 16, 2016 03:47PM Leslie13 wrote:

My diagnosis for RA came first. About 2 years ago I started feeling unwell. Dr. ordered ANA and ELSA testing. Both my ANA and several markers for Arthritis and autoimmune disease came back with scores 10x normal. I met with a Rhematologist and didn't want to take biologics. 6 months later I was DX'd with cancer.

I'm not saying Femara doesn't cause or worsen arthritis. I had my first hip replacement 5 years ago, so for me the Arthritis came first, but the Femara is definitely causing even more pain. Since starting Femara, it's far more widespread than before.

There is some thought that cancer is the result of a poor autoimmune system. I have a new Dr. who's going to recheck markers, then look at treatment options. With the early onset arthritis, there's no question that my immune system problems came before cancer. And that may be the case in many circumstances. A strong immune system eliminates cancer cells. A weak one doesn't.

And RA sucks no matter how you get it.
Dx 4/17/2015, ILC, Both breasts, 3cm, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- Surgery 9/29/2015 Lymph node removal: Right; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy Femara (letrozole)
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Apr 1, 2016 04:53PM Mares61 wrote:

Greetings! This is my first post. My question is: Has anyone else experienced RA symptoms specifically attributed to anastrozole/Arimidex?

I sailed through breast cancer diagnosis (July 10), surgery (August 6), radiation (week of September 21), and chemo (October 8-December 10) during the last six months of 2015. I did great through the whole thing, never even got sick from the chemo, and barely missed work.

At the start of February, I started taking anastrozole, and within a week, my thighs were aching terribly . . . and I know I wasn't exercising to cause this! After about a week, the pain settled in my knees and then spread to all other joints.

I quit taking the anastrozole at the end of February, and tested negative for RA at that time. Since then, I have gone downhill. My hands/fingers are numb in the median nerve innervation. They're so stiff in the mornings, I can't make a fist, and I can barely hold a pen to write now. I have pain in most joints now, but my hands and arms are the worst.

I had more blood drawn for RA and lupus yesterday, and I'm hoping to get into a rheumatologist. Anyone else have these issues after such a short time on this med? (Just FYI: I am a total lightweight when it comes to meds. I am pretty lit up after two beers, and I slept through chemo with 25 mg of benedryl. So maybe I'm just a different breed?)

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Apr 1, 2016 09:39PM Moderators wrote:

Hi Mares!

We just wanted to say welcome to Breastcancer.org and THANK YOU for posting! We're sure someone will come along soon who can give you some insight or share in your experiences.

We look forward to hearing more from you!

--The Mods

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May 17, 2016 11:17AM SherryJanuary wrote:

  1. Sorry this is late but just joined! I got Rheumatoid Arthritis after my mastectomy. I was put on letrozole and got really bad aches so switched to tamoxifen. I assumed the aching joints were due to letrozole but I don't think so now. It was the trauma of the breast cancer. 4 years later I still have chronic RA.
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May 17, 2016 11:18AM SherryJanuary wrote:

    1. Sorry this is late but just joined! I got Rheumatoid Arthritis after my mastectomy. I was put on letrozole and got really bad aches so switched to tamoxifen. I assumed the aching joints were due to letrozole but I don't think so now. It was the trauma of the breast cancer. 4 years later I still have chronic RA.
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May 17, 2016 01:59PM dtad wrote:

Ok come on ladies there has to be a link! Inflammation is a common denominator for sure! I have multiple autoimmune disease and obviously bc. We all know that aromatase inhibitors cause joint pain. Sometimes permanent, but IMO its our immune systems that are failing us. This is a very interesting link. Lets keep it going.....

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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May 20, 2016 11:00PM SherryJanuary wrote:

hi this is an interesting subject! when I asked my cancer doctor yesterday if I could switch back to Letrozole because I cannot find an antidepressant that works with tamoxifen AND my RA drug she said I would have to clear it with my rheumatologist because Letrozole can compromise my RA . I am confused.

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May 27, 2016 07:59PM HeatherAre wrote:

Hi all,

This is my first post here. I went through treatment (surgery, chemo, radiation) and ended the treatment on New Year's Eve 2014. I ended up with a horrible infection, cellulitis and septisemia but recovered from all of that in May 2015. I also started taking Femara in December of 2014. The first 8 or 9 months were fine. It didn't bother me a bit. Then, it got terrible. My thumbs ache all the time and are quite swollen. I wake up with severe hip pain and now my back is extremely sore. I can barely move most days. I found a small lump on my elbow and was telling my husband about it and he suggested the pain is rheumatoid arthritis because elbow nodules are one of the first signs. If it was just pain, I wouldn't care. I can withstand a lot of pain and just push through it. My worry is that it's RA and my bones are taking a double hit from that and the Femara. I'll meet with my doctor next week and talk about it but it does seem odd that so many are experiencing elevated RF with the aromatase inhibitors.


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May 27, 2016 08:37PM Moderators wrote:

Dear HeatherAre, Welcome to the community. We are sorry that you are in such pain but glad that you reached out and posted here. We hope that you will find support and information from others who have similar situations. Please keep us posted on hot your doctor's appointment goes. the Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 30, 2016 06:22AM tayo wrote:

I am 70, had a lumpectomy and 2 lymph nodes removed April,2015. No meds, chemo or radiation as I refused. Started with trigger fingers and swollen thumb joint on one hand a few months after surgery, now pain in most joints which seems to be quickly progressing. I don't think it's the chemo or drugs since I've had none. It seems to be related to either the surgery or just horrible immune system. Welcoming any and all who have any knowledge in this area.

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Jul 30, 2016 01:27PM leftduetostupidmods wrote:

No doctor will ever tell you that it's the AIs that cause arthritis and joint pain.

I went through all three AIs and settled on Femara. Stopped it all together after three years but by then the damage was done.

I did not get rheumatoid arthritis - I got osteoarthritis, very fast advancing.

First saw a rheumatologist, he did all the nine yards when it comes to blood tests. Blood test showed inflammatory factor barely there, close to 0. He said that he thinks I have rheumatoid arthritis even if the blood test doesn't show it and I should start taking Plaquenil. I did a quick search and saw that Plaquenil can cause macular degeneration. So I told him that I'm sorry, but when a doctor recommends me a medication that can cause me to become blind, when I have family history of that condition (my mother), and tries to push pills on me even when evidence shows that I do not have the condition the pill is prescribed for, that doctor has no place in my care team. And left the consultation room.

Went back to my primare care doctor, and she actually got very upset about what the rheumatologist did and ordered complete body XRay. Surprise surprise, osteoarthritis. Big time. With all cervical vertebrae of the spine involved, severely - slipped vertebrae, narrowed foramens, spinal cord deformity, you get the picture.

So I got referred to the spine and pain management dr. I'm seeing now. At our first visit (that was almost 5 years ago) he told me he looked at the XRays before the consultation and he had thought I was in my late 80s and was very surprised when he actually met me - the damage was so extensive on my spine. And he was the only one to actually say that yes, he has seen this before on BC patients who were on AIs and he thinks the AIs are causing it.

Since then with his help, diet, exercise, shots in the spine, I managed to keep it stable, it did not advance anymore. But it did get bad enough that it got me practically disabled.

So yea, don't expect doctors to tell you the truth about the AIs.


left this forum this time for good due to how stupid moderators are
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Jul 30, 2016 01:48PM dtad wrote:

Pretty sad that we can't rely on the doc to tell us the truth about SE...

Dx 3/20/2015, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Dx 4/10/2015, ILC, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- Surgery 5/21/2015 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Sep 3, 2016 08:34AM BellaTassie15 wrote:

I am on Herceptin (Tratusamab) and Perjeta (Pertusamab), immunotherapy drugs which were approved in July last year for metastatic breast cancer (only) in Australia. I complained of worsening muscle and joint pain and stiffness for over 6 months. I was truly miserable and depressed with it. The onc just put me on an increasing morphine patch with no relief. It was just assumed I had more severe side effects to treatment. I was finally diagnosed with Polymyalgia Rheumatica, an autoimmune disease, with very high levels of inflammatory markers. My GP and Registrar have both acknowledged that it was triggered by the immunotherapy treatment. I am now on high dose prednisolone, gradually reducing, with 100 per cent improvement and can't believe how good my body feels. I just wish I had been diagnosed and treated 5 months earlier when my ESR was first noted to be elevated! But I guess they will now be aware of this side effect, which was certainly not noted in the patient information, to diagnose other women in a more timely mannerin the future.

Dx 7/2015, IBC, Left, Stage IIIC, ER+/PR+, HER2+ Dx 10/2015, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+ Dx 8/2017, IBC, Left, Stage IV, metastasized to bone/liver, ER+/PR+, HER2+ Surgery 2/7/2018 Lymph node removal: Sentinel; Mastectomy: Left Radiation Therapy 3/25/2018 Whole-breast: Lymph nodes, Chest wall Hormonal Therapy 4/23/2019 Femara (letrozole) Hormonal Therapy 9/10/2019 Aromasin (exemestane) Chemotherapy Taxol (paclitaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab) Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy AC
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Oct 27, 2017 12:31AM TimlinThe wrote:

I had breast cancer 3 years ago. The only treatment was a mastectomy and since then have suffered chronic pain that has gone undiagnosed to this day. It is awful. Today any obgyn ordered rheumo testing just to be safe. I came across this thread and there is a mix of relief at maybe having figured something out and just continued anger at my pain being written off and ignored. I feel completely handicapped and not myself. I am hoping to get some answers through blood tests. Thank you for letting me vent. I am sorry for all of your pain. It just plain sucks.

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Nov 14, 2017 11:54AM droske01 wrote:

I was diagnosed with inflammatory arthritis several years ago! Rheumatologist would not call it RA!! I had a double mastectomy in August with no further treatment! I managed to make it 11days on anastrozole before the pain was too much! I️ ended up in a boot for two weeks! I will be seeing the rheumatologist on Wednesday for more testing

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