Need help with side effects of Femara and Arimedex
Hello to all...I could really use some advise and have been reading this site for almost a year. In April of 2013 I was diagnosed with Invasive Lobular Carcinoma, stage 2B, grade 2 with 3 cancerous lymph nodes involved. I had a bilateral mastectomy with reconstruction, silicone implants. Six days after the implant exchange I had pulmonary embolisms (blood clots in the lungs) and was hospitalized for three days and am now on Coumadin for 6-12 months. In January I started the estrogen blocker Arimedex (was ER and PR positive and Her2 NEGATIVE). Well I lasted 3 weeks on the Arimedex because of the bone and muscle pain which was debilitating. So my MO changed it to Femara, which I have been on almost two months. The symptoms are just as bad, if not worse. Every day I struggle to move and I am only 66. I was fit as a fiddle before the BC DX and never, ever, had knee problems or trouble moving. Now I feel like I am 90 years old and hate what my life has come to. I was given a script to try the third AI-Aromasin (Exemestane) but did not fill it because the cost was 4 times what the other two drugs are and appear to have the same side effects. Now I am rethinking that and might try it just to see if I get some relief...if there is any such thing.
I am actively searching for something to take to offset the muscle pain, achiness side effects in my legs, hands and arms and back. I cannot take ibyprofen because I am on Coumadin so can only take Tylenol, which does nothing at all. The only thing for relief is a heating pad which I cannot do all day long. What do any of you do to help offset the side effects? I do sometimes have insomnia but I take the pill first thing in the morning so it is not to bad on that end. But this (these) drugs are driving me crazy and I just can't imagine taking them for five whole years.
Any advise would be welcome. Thanks so much to all of you on this crazy mixed up journey.
Maryellen
Comments
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Hi Maryellen have you tried taking a Claritin with your Femara? I have heard that it can help with muscle aches and pains as well as magnesium.
Love n hugs. Chrissy
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I have been taking Arimidex for 9 days and have started experiencing severe nausea not helped with anti-nausea meds. I would like to know if this is temporary or will it last? Do I need to switch to another drug???
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Joyandhealing the nausea is usually a temporary SE that lasts for about two to three weeks. After that it should settle as your system starts to get used to the AI.
Love n hugs. Chrissy
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Hi Maryellen6, chrissyb, and joyandhealing:
Hi all. My oncologist has a name for the bone aches and pains s/e: she calls it the "90 yr. old woman syndrome."
I've been on Femara for 5 weeks and my biggest s/e was fatigue. I do take "Country Life" chelated magnesium 250 mg., and about 1500 mg. of Nature made Calcium. The magnesium helps relax muscles and supports bone health. I do feel the difference in my bones when I don't tale the magnesium. But please ask your DR if you can take this with your coumadin Maryellen6.
For my s/e of fatigue, I added a multiple vitamin to my daily vitamins., Centrum Silver multivitamin/multimineral supplement for women over 50. And I bought some chewable Vit. C's., am taking 1000 mg./day, plus vitamin D3-3,000 i.u.'s per day. (it's a chewable too)
My fatigue does feel better today in adding a few extra vitamins. Plus my ONC said to make sure I walk for exercise.
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Maryellen & joyandhealing,
I have been taking Arimidex for almost one month, do not like it, but will stick with it. I bought the generic Claritin yesterday, it's Loratadine. I have read from other AI users that it helps them.
My hips hurt, arms & shoulders ache. I am hoping time will help, and spring weather.
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Hi ChrissyB and Holeinone:
I'm new to this thread. Can you tell me more about Claritin helping AI users? Thank you.
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pabbie,
I found BCO when I was almost done with chemo, but I kept reading that if you took Claritin, it would help with the bone pain from the Neulasta shot.
There are several women, on other threads ( there are 2 for Arimidex ) that take the generic of Claritin for there pain of Arimidex. I bought it ( Loratadine ) yesterday. So, too early to say yet if it s going to help me. I do not want to switch AIs, as I think they all will have some SE. How are you doing on the Femara?
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Hi Holeinone:
I'm on week five of the Femara and the worst s/e for me is fatigue. One day this weekend it felt like the fatigue I got after chemo., I was down. I tried to remember what I did to help myself during and after chemo., and I was missing a good multiple vitamin and extra Vit. C., anything to help my immune system. My fatigue did feel better yesterday and today but today my throat feels like if I were getting run down.
My ONC said all the AI's are the same as far as s/e's. So I'm sticking with Femara thus far. I haven't had a Neulasta shot., what does it help?
I also take 75 mg. of a generic Ellavil which helps me with headaches/migraines, sleep, anxiety, and depression. It's an older drug but it works well for me. Plus I add a little clonazapem too. Clonazepam is a benzo-diazapan. (sp) (in the valium family)
Have you tried increasing your Magnesium? Let me know how the Claritin or generic Claritin works for you. We have to do what we can do to stay on AI's for five years. I did 5 years of tamoxifen but cut the pill in half because of the s/e's., BUT then I got a BC re-currence., so I don't advocate anyone cutting these pills in half.
It's nice chatting with you.
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I have used glucosamine with the support of my MO, who suggested it. Bikram yoga (done in heat and humidity) regular practice 4 days a week helps me the most, since it involves regular stretching. B-12 helps with fatigue. The arimidex side effects for me come and go. The latest is trigger fingers and stiffness/pain in my hands in the mornings. I have to self-massage and stretch every morning in the shower/hot water. Before, it was hip pain and thigh muscle, like sciatica, pain. That seems to have subsided.
Regular walking (daily) helps too. I also lift weights twice a week.
I've told my husband that this drug is a hard row to hoe. But I'm committed to taking it since I need to believe I'm giving myself every opportunity to live.
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Thanks everyone for the helpful tips. I do take Claritin but it doesn't seem to help with the achiness. I am seeing my primary tomorrow and will see if Alegra would be better. Can anyone tell me what dose the Magnesium should be. I just went and bought 250 mg but didn't know if a higher dose would help. I have to be careful what I take because the Coumadin interacts with so many drugs and vitamins.
Thanks again...it is so helpful to know that I am not alone in this.
Maryellen
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pabbie,
Neulasta is a shot that most ladies receive after the chemo drugs A/C & Taxol. It is too boost your white blood count. Maybe it is for dose dense ( every 14 days ). I had 7 of them, they are expensive.
I am optimistic that the chronic fatigue will change soon. If I did not believe that I would go nuts! I have always been very active.
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I've been on Arimidex for 2.5 years now. I've been trying to live my life in spite of sometimes debilitating side effects.
I've found the loratidene is very helpful with the aching bones. That was confirmed for me when I had to discontinue it for a week prior to allergy testing. I could hardly wait to resume taking it. I got the OK on taking it from my MO and the allergist said that it's one antihistamine that is fine to take on a long term basis.
In addition I take fish oil, MSM +Boswellia (natural anti-inflammatories) and Vitamin D.
Acupuncture has been really beneficial too.
My joints still ache and my walking is limited, but at least I'm mobile to a degree.
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MaryEllen6: I take "Country Life" chelated magnesium 250 mg. with calcium before bed. But check w/ your dr first.
Holeinone: Thank you re: the Neulasta. I didn't have chemo for BC. And for the idea to take generic Claritin.
ClaireinAz: Thank you so much for the B-12 suggestion. It is in my multiple vitamin I just started taking for women over 50. I too like to walk for exercise. I did restorative yoga for awhile., but have found that yoga is not easy. I like my mindfulness morning walk., meditation., and prayer.
Kmpod: My sister loves the fish oil. And Vitamin D is a must.
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MaryEllen, Hello and so sorry you are having trouble with the AI's. I have been on Femara for about 7 months and definitely have the 90 year old woman syndrome. I started out taking Ibuprofen and that helped but I didn't want to take it all the time due to possible side effects. What I have found is that the only thing that makes it better is weight bearing exercise...mostly walking for me. I still have stiffness when I rise from bed, chair, car...but it doesn't hurt anymore. There is a lot of research around exercise being a game changer with this medication for those of us with joint and muscle pain side effects.
MsP
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Just be aware that Centrum Silver Women's contain soy as an ingredient. ER+/PR+ cancers are to avoid soy I was told. I switched to One a Day Women's vitamins.
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Hi, Maryellen -
I started Arimidex in August 2012. Within weeks I was
feeling the pain, but I held out hope that it would get better, or that I’d at
least be able to live with it. I’d had fibromyalgia for ten years prior to that,
which went away with a switch to a gluten-free diet. I also took a daily
Loratadine (I have awful allergies and asthma), as well as magnesium and
calcium. I tried to walk every day, even though it hurt.I did not take a multi-vitamin, as my Oncologist has said I
must stay away from any anti-oxidants such as Vitamins A, C, and E. Apparently
there is some clinical evidence that in addition to helping normal cells grow,
they have the ability to assist cancer cell growth.But at the one-year mark, the pain was unbearable at times.
I tried to keep up my daily exercise, but it was very difficult. I was taking
Norco at night for the pain, just so I could get a full night’s sleep. I also had a dramatic increase in blood
pressure, painful trigger finger/trigger thumb, severe “lady parts” problems,
urinary incontinence from atrophied tissues, and crushing depression.The MO gave me a two-month drug holiday. Within six weeks, all
those symptoms returned to my pre-AI levels.Then she prescribed Femara. I had some low-level nausea at
first, but that went away. I was not able to go back to my daily exercise due
to some spinal issues, but I do keep active around the house. I take the Femara
at night. I continue to take the Loratadine and magnesium. I also make it a
point to stay well-hydrated.Heat works well for me. Hot showers at night help me to
relax (I have no hot flashes), and for exercise, I work out in the therapy pool
at the Rehabilitation hospital – it’s heated to 94 degrees, and is heaven on
sore muscles and joints. I also occasionally wear a ThermaCare heat wrap. It’s
like a portable heating pad you can wear all day!I do occasionally take an Aleve during the day when I have
back pain, but again, that’s a structural issue, not an AI issue.My BP is back to normal, my ankles are no longer the size of
tree trunks, the “nether regions” issues have resolved, and I look forward to
my days instead of wanting to pull the covers up over my head and stay in bed
all day.However, the one thing that I think is making a difference
is weekly acupuncture sessions. My MO readily referred me to a Traditional
Chinese Medicine provider, as research has shown an improvement in joint pain
and stiffness in women taking AIs. I believe it is working. I still have the
back pain, due to a vertebra that is pressing into my spinal cord, but that is
not a SE of the Femara. I do notice that I no longer have the OVERALL joint
pain and stiffness. -
Thank you Sharon1942 re: the soy. My husband and I went thru the house getting rid of soy. I didn't think to look at my vitamins. And Blessings2011, I didn't know about the anti-oxidants. Thank you.
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p.s. I'm looking for a soy-free alternative to Centrum., One-a-day makes me nauseaus. Any ideas? Thank you.
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Acupuncture during chemo took away my nausea. I believe that it would help with the achy joints & hot flashes from Arimidex, but my insurance doesn't pay for it & $80 is expensive when you are retired. Sigh.
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Pabbie, just go to the pharmacy & read labels to see if you can find another one without soy. That's what I did to find the One A Day.
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HI:
I found a multiple vitamin from GNC called "GNC Women's Ultra Mega Mini" with no soy.
My sister gave me the idea. Thanks everyone for the Soy Alert!
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I'll remember the GNC vitamin, too. Thanks. You also have to be careful with protein powder because lots of it contains soy.
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Has anyone skipped days of their arimidex or only taken half dosages or has anyone discussed this with their oncologist.....the fatigue is driving me crazy....I have been on arimidex for almost two years -
czpugi....I have been taking 1/2 a pill a day of Femara for almost 4 years. My side effects on a full pill were too severe for me to handle. My Onc wasn't thrilled about my decision to do that, but understands that quality of life was being affected. It wasn't his idea, I just did it on my own. I researched the trials done by the pharmaceutical company and found that at a half dose, the estrogen suppression was 100%. However, either the DFS or recurrence rate, one or the other was better with a full dose. For me, it was the only way I could continue with this drug. My Onc said it would be better to take a 1/2 pill a day rather than a full pill every other day. Each of us have to do what is best for us. Best Wishes,
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Evidently, that is what I have been experiencing for the past 6 years, 90 year old woman syndrone, but now I'm developing more symptoms. The bottom of my feet burn as if they have a huge blister, my hands don't do what I want them to do and the achy joints are getting worse. And the 50 extra pounds I've gained while being on thisdrug doesn't help. I have had surgery to fix my carpel tunnel on both hands and I've had 3 trigger fingers operated on. I don't know if I can make it another year. Does anyone know if these side effects will stop when we go off these aromatose inhibitors? I need some kind of hope.. -
Hi there. Just wanted you to know this is a very old thread so you might not get a lot of responses. I'm so sorry you are suffering. The burning on the bottom of your feet sounds like neuropathy. There are drugs for it. The achy joints are definitely a side effect of the aromatase inhibitor. The weight gain is also. I do not want to take away any hope but the joint issues you have might get better when you come off the drug, but not always. You should talk to your MO about when you can come off or even changing it. IMO quality of life is also important but its a personal decision. Good luck and keep us posted. PS you might get more responses if you go on the Femara and Arimidex threads separately.
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