Now diagnosed with rheumatoid arthritis, but Im not convinced.
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TimlinThe....so sorry you are suffering. Are you taking an anti hormone?
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Hi there.
I was diagnosed with ER ductal and lobular cancer (primary) I had breast surgery in December 2016, radiotherapy up to March this year and after taking Anestrazole for 6 months I couldn't cope with the pain all over my body and my loss of muscle control that made me stumble about. I have never suffered from any rheumatic condition before but now I have been diagnosed with PMR. I no longer take anestrazole and have had a break from AI drugs. All symptoms disappeared while on prednisolone treatment and really felt well. I now have a new drug called Exemestane and its all coming back again after only 2 weeks. I'm still on prednisolone too so these drugs are working against each other?? Anyone else had the same?should I ask to try tamoxifen
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I am just joining this post for the first time on Breast cancer.org. I am afraid that by tomorrow I won't be able to walk. My joint pain and stiffness is so severe my oncologist took me off Tamoxifen 12 days ago. I am reading that estrogen deprivation can cause this, but it is usually associated with Letrozole. He has me on 6 Advil a day, but every morning, another muscle group or joint is affected. He has had me do two sonograms for possible DVTs in my legs, but both negative. I only made it 41 days on Tamoxifen before these severe side effects showed up. Has anyone had this severe symptom on Tamoxifen, and does it get better eventually? I had a whole round of blood tests this week, but don't think RA was ordered. I am three months post mastectomy, Stage 2 bc. There were no red flags on the blood work. Help!
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I have done the circle of AI drugs. Started on Anastrozole and the pain was excruciating. Moved on to exemenestane, but it was $1100 for 90 days. Switched to letrozole, and it had the least side effects. It's been almost four years since I started (diagnosed in October of 2013 with Invasive Lobular, stage one, three lumpectomies, did chemo, radiation and finished all that in July, 2014) and the pain and swelling has progressed.
I have terrible pain in my hands, swelling, knee pain, hip pain and wrist pain. I've received cortisone shots in my thumb/wrist twice for DeQuervans tenosynovitis (and apologize for spelling that wrong if I did) since being on letrozole. I am overweight and don't exercise enough, although with the spring weather, I have been trying to do 20-30 minute walks with the dog. Finally took a two week break from the letrozole and saw a rheumatologist. She sent me for Xrays and bloodwork. She believes that I may have RA. Although she believes it pre-existed the cancer (I have gotten back blood results of high ANA levels), she feels that the letrozole exacerbated it.
I am seeing her again on the 9th of May. She said that if the condition does exist as she suspects, then she hopes to treat it, reduce the inflammation and keep me on letrozole for another six years.
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I had breast cancer 2 years ago. My doctor started me on Tamoxifen a while after I finished radiation. I was fine at first. About 3 months in, I started having joint pain. I asked my doctor if it was related to Tamoxifen and he said he doubted it. It got worse and worse to the point that my knees hurt so bad I could barely walk. I stopped taking Tamoxifen, but the symptoms didn't go away. I have a diagnosis of RA. My blood work showed high inflamation markers for RA, but I didn't test positive for RA. I guess you can test negative for it, but still have it. My rheumatologist has diagnosed me with RA. I don't think it is a coincidence that I developed this issue after being on Tamoxifen. Tamoxifen has a label that warns of possible sketeto-muscular issues, but nothing specific. I really believe the Tamoxifen caused my RA. From the research I have done, it looks like a lot of people have developed autoimmune issues post Tamoxifen. Anyone else out there thinking the same thing?
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I do not test positive for RA, but have been diagnosed with it after using Tamoxifen. I don't think it is a coincidence. My rheumatologist saus that he sees a lot of people using Tamoxifen related meds and aromatase inhibitors with these issues.
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I think the correlation between RA and breast cancer is the aromatase inhibitors and cancer related drugs. It's the drugs. I don't think breast cancer and RA themselves have any relation. I attempted taking Tamoxifen, Arimidex and Aromasine but had horrific side effects from all three. Arimidex and Aromasine gave me unbearable stiffness and join pain throughout my body within a couple weeks of starting the drugs. It's been 6 months since quitting the AIs and my joint pain has remained. Just did bloodwork to diagnose RA -- I have many of the symptoms. I knew those drugs were really horrible for the body -- so many horrific side effects.
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I think the correlation between RA and breast cancer is the aromatase inhibitors and cancer related drugs. It's the drugs. I don't think breast cancer and RA themselves have any relation. I attempted taking Tamoxifen, Arimidex and Aromasine but had horrific side effects from all three. Arimidex and Aromasine gave me unbearable stiffness and join pain throughout my body within a couple weeks of starting the drugs. It's been 6 months since quitting the AIs and my joint pain has remained. Just did bloodwork to diagnose RA -- I have many of the symptoms. I knew those drugs were really horrible for the body -- so many horrific side effects.
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Dianedz, welcome to BCO and thank you for sharing your experiences with our community. Very sorry that you had adverse side effects, and continued joint pain.
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I have been suspecting that femera was the beginning of joint pain. But it has lasted longer than my usage of it.
I also have osteoarthritis which hurts a lot. So does my dad but he's 84. Because of genetics, I figured I'd be getting it when I was older, not in my forties. The treatments also seem to be speeding up the breakdown of my body. I'm on tykerb and xeloda at the moment and experience degenerative disease of my spine, knees, shoulders and feet....joint pain. I truly sound snap crackle, and poppy.
Drs say treatment shouldn't be blamed for all this pain, but then I hear it from others and read it on the medical risk pages that accompany the meds. I also started feeling really good last summer when I had a med break for post op healing. I've decided I'm not going crazy or we all would be crazy. Thanks for sharing.: )
Barb L.
And I did have tamoxifen right before femera. It didn't work but made my uterus lining look suspicious so they did a full hysterectomy. That was not fun, but more estrogen's gone from the scene..
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diagnosed w BC in 2012. Had mastectomy and no chemo or radiation. On tamoxifen for five years. Went off in March 2018 and in the last two months I have had increasing joint pain in ankles and hands and fingers. After blood work my GP advised I have RA. Has anyone else had increased joint pain AFTER going OFF tamoxifen?
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I switched to Letrozole in Jan, 2018 after two years on Tamoxifen. I started developing RA symptoms and gout. Yesterday I went to see my oncologist. He asked me stop Letrozole for a few weeks and gave me MethyIPREDNISolone Tablets and Meloxicam. I did what he said. Today I feel much better. I will see how things change. He said if confirmed all these caused by letrozole, he will change other medicine for me.
Personally I felt letrozole is much better than Tamoxifen in side effact.
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I found I was Sero RA in 2016 and since my breast cancer s I have had several flares; fever fatigue and pain. Now I am exhausted all the time and doing the smallest things make me ache, I find it hard to know if it is the RA or the letrozol I am on. I also have nerve pain in my breasts; I had a double Mastectomy, that I have dealt with since surgery in April. When I asked the doctor she said if it comes and goes it is probably the RA and if it is persistent she wants to know so she can decide to keep me on or change the medication.
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Hello,
I did some research and lymphedema and R.A. are related. The one arm I have less lymph nodes is the hand I am now seeing R.A. symptoms.
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Thank you!
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looks like this was posted a long time ago.....how are you doing now?? I have severe joint pain too. I tend to underreport due to what I describe as uncaring doctors office - itis aka pass the buck assistant myalgia aka not my job ectomy. I swear. Nobody gives a shit. That’s been my experience anyway. Diagnosed at 48 May 2018. Mastectomy aug 7 2018. That’s when my care sort of stopped. From there it’s been factory farm like appts for chemo, a break, more for radiation, and when I want to report any odd feelings or pain there’s nobody who cares to report them to. I’m basically on my own. Oh and my stellar treatment is provided by the can’t do one thing on time Moffitt Cancer Center in Tampa. Becoming a dr used to be a calling. You must however CARE about people and patients. When I call I’m treated horribly. They can’t be bothered. I’m in pain too. I never thought of rheumatoid arthritis. My feet are excruciating for 18 months. Plantar fasciitis i guess. But for 18 mos? I’m at my whits end. Pain? Yes all the time? What from? Your guess is as good as mine 🤷🏼♀️ RA sounds good. Now what to do? Sorry everyone. I’m fighting back the only way I know...,.takin it to the streets. Can I hear an Amen?
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Lorih555: It would be helpful if you posted your dx, surgery, chemo type and hormonal treatment. You can see a rheumatologist for follow-up on your joint pain and request diagnostic blood work that would determine if you have pain from RA versus AI's used for treatment.
I have had plantar fasciitis in my left heel for nearly 3 years, bilateral carpal tunnel symptoms despite having surgery on both wrists in the past for CT release, and much of it depended on the AI I was taking. I am now on my third (and last one) and while the symptoms have really decreased to the tolerable level, I am not totally painfree. I finally took the initiative to find a rheumatologist and really feel I have found one that listens to my concerns and attempts to find a solution. My rheumatologist has dx'd me with RA but feels my pain is related more to the AI's.
My MO is a lovely person but really did not offer much in the way of help with my joint issues. She did offer AI changes and out of desperation after nearly 3 years on letrozole I switched to exemestane. Each bring their own set of SE so while I lost some of the joint paint, I now have lower extremity edema. Which means I had to add yet 2 more drugs, to the many I take, to offset AI side effects yet again. Not being able to wear shoes (forget sneakers, I could not even get them on) is a real problem and my swollen feet were painful.
So advocate for yourself. Find a rheumatologist and see if they can offer you relief from your joint pain. Hugs.
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hi
I am new to this site , but have similar issues. I am getting Faslodex injections monthly. My 4th injection scheduled for tomorrow, I have severe pain in my right armpit 6 weeks and is worsening. I have been to chiropractor and a walk in clinic this past weekend to get X-rays. I was told I have severe arthritis in my neck which is causing the pain in my arm and shoulder. My oncologist says it is not from Faslodex injections.
Anyone else have similar problems
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Hello. I have been on Tamoxifen for about 6 months now and the joint pain throughout my body and the swelling and burning in my hands is getting incredibly uncomfortable. I rarely sleep more than an hour at a time because each time I roll over, my shoulders and hips start aching and it wakes me up. I've had Raynaud's and hypothyroidism for more than 30 years and I'm beginning to wonder if I am getting RA. My oncologist got me set up with a Rheumatologist and my appointment is next week. I've lost 25 pounds since taking Tamoxifen. I play tennis quite a bit but I don't think that's causing the weight loss. If I sit for more than an hour, it is very uncomfortable getting up and taking the first 15 steps. Getting out of bed in the morning is quite painful. I am reading more about lack of hormones caused by early menopause (The chemo pushed me into it and the tamoxifen is keeping me in it) that can trigger the joint pain. I don't know which is worse -- cancer or this pain. My 12 year old now has to help me with carrying heavy objects and opening jars and bottles.
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Cricketdog, your weight loss is unusual. Menopause and estrogen suppression cause weight gain, not loss... I'm assuming your thyroid has been checked recently?
The stiffness after sitting etc sound familiar but pain keeping you awake at night + weight loss definitely demand investigation. Honestly I'd ask for a nuclear bone scan
Best wishes
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Just want to note that Tamoxifen does not put a woman into menopause nor does it keep her there after chemopause. This sounds miserable, Cricketdog. I hope you find answers soon.
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Cricketdog, I agree with Moth. Ask about a nuclear bone scan. I completely relate to the first few steps being the worst. Get it checked if you can.
Carol
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Cricketdog I have experienced that terrible burning hand pain and swelling that kept me up at night. I firmly believe it was my body getting toxic on Tamoxifen. I began experiencing the pain about 2 years in for me. We investigated everything from carpal tunnel to RA. None of those. What helped me most was switching from one 20 mg tablet to taking 10 mg twice a day. Magic for those symptoms. I also experienced severe joint pain in my hips the first six months on tamoxifen. So much pain that we did a nuclear bone scan, but that was clear. A word of caution though I am now classified as having osteoporosis, I lost a lot of bone mass the first two years on the drug. Please also get a Dexa scan to check your baseline.
I am also one of those that doesn't gain weight on Tamoxifen. I lose weight and have to work at keeping it on. That aspect is also better now that my dosing schedule has changed. Please speak with your MO about trying this, or simply cut your pill in half (thats kind of hard to do they shatter).
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Thank you, everyone for your input. I really appreciate the support.
My thyroid was checked during chemo and results were normal. I'm on the same dosage I've been on for many years now and don't have the side effects from being hyperthyroid at all. I ate a ton of food over Thanksgiving and maintained my weight. Before all of this, I would have gained a few pounds from eating out 2x a day. Do any of you have issues with malabsorption?
I've only been taking 10 mg of Tamoxifen, with my MO's approval (and his hope that I move to 20 mg at some point). I've never increased the dose because the SEs already feel so bad -- I can't imagine doubling the dose. I didn't have much of an appetite the first few weeks of taking the drug but seem to have a normal appetite now.
My appointment with the rheumatologist is on Tuesday and I'll update as I learn more. I'll certainly ask about the scans.
Here's a pic of my hand when the Raynaud's kicked in after coming home from tennis. It was 69 degrees outside...
Thanks again.
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Hello. I just wanted to update on my visit to the rheumatologist yesterday. The doctor thinks I have fibromyalgia and injected me in my hip, shoulder and back with lidocaine. It dulled the pain for about 30 minutes. I got home and did some research and there is no way I have fibromyalgia. The pain is in my joints -- hands, hips, shoulders, and knees, not in the muscle tissue. He suggested taking Alleve for the pain and also prescribed Neurotin. I will pick up the prescription tomorrow. He also thought the Raynaud's was due to stress from my cancer treatment and that it flares up because of stress and anxiety. I wasn't stressed at all after the picture was taken above. I'd just arrived home from tennis, something that gives me great pleasure. I'm going to try the Alleve and pick up the prescription to see if it helps. Thinking of calling my oncologist to ask him for the name of another rheumatologist for a second opinion.
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I see you mentioned hyperthroid. I had hyperthroid about 25 years ago with eyes involved. I've been on ai for three years. I had joint pain before diagnosis. This became unbearable 3 months ago. All my finger joints were swollen and purple one morning. Called internist. She had me go off AI and ran blood work for b12. Ended up being diagnosed with pernicious anemia which is an autoimmune disease. Come to find out it often occurs with Graves disease which is another autoimmune disease. Further testing finds intestinal metaplasia. I figured out I had graves disease all those years ago which has now lead to pernicious anemia and the intestinal metaplasia. Started taking b12 in high doses which is what pernicious anemia is-the inability to absorb b12 from food-which occurs in the stomach where the intestinal metaplasia is. Sorry for the long explanation but all this is to say get your b12 and d checked. I have been able to now restart the ai and don't have much pain any longer. I still have a way to go but feel the b12 and d supplementation has turned my life around.
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Thank you, deedledee. My father had pernicious anemia as well and I believe it can be hereditary. I'll look into it. Glad you're feeling better!!!
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In case it is helpful. This study calls out AIs can cause rheumatoid arthritis.
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