For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
JaneQPoppy, that makes perfect sense to me! I think you've described it well. I totally get the bit about it being like an adrenaline rush after someone scares you. I hadn't thought about trying a cream for it, definitely going to try that. I've tried using ice packs to numb it which works, but the sensation comes right back when I take the ice off.
count_it_all_joy, I did see a neurologist to see if there was peripheral nerve damage causing the symptoms, since I do have mild stenosis in my neck. He ordered some nerve conduction studies on my arms, which were normal so he sent me on my way. He said it might be a side effect of the chemo, and at that point I didn't even bother to correct him and tell him I never had chemo (sigh). He did prescribe me some gabapentin that helps tame things down enough to get a little bit of sleep anyway. There aren't many doctors that will continue to probe for answers after their initial hypothesis proves false. They just say "I don't know," making you feel like it's in your head or that you've wasted their time by not fitting in their box.
I take a B-complex but don't know what my levels are. How much B-12 do you have to take to get your level that high? I'm willing to try anything at this point (except Letrozole). I've done a couple of medication "resets" but it didn't really solve anything.
It seems like this particular side effect isn't a common one if it's caused by the anastrozole. I might have to start looking into some of my other meds or vitamin depletion as culprits. It does seem more of a central nerve problem than a peripheral one, since it doesn't stay in one area.
0 -
whatjusthappened said: "It seems like this particular side effect isn't a common one if it's caused by the anastrozole."
The thing is, anastrozole has so dang many side effects! Maybe this isn't one of the more common ones, or one of the worst ones, but I sure associated it with Arimidex as I never had it until after the BC.
0 -
To all with the debilitating SE I encourage you to consider seeing an Integrative Dr. When I had my 6 month checkup April 2019 I stated all of my SE; anxiety, fatigue, insomnia, leg cramps excessive joint pain, warm flashes, mood swings, extreme blues & down right a bitty! I was offered a couple of prescriptions which I declined as I didn’t want any more SE from them. I insisted to have a referral to an Integrative Dr. of my choosing which was provided. After my initial appointment I did the elimination diet & found eliminating gluten, which can cause inflammation, helped reduce the joint pain and started acupuncture for all SE. What an amazing difference it has made. During the shut down my Integrative Dr. was furloughed so no acupuncture for 3 months which caused extreme SEs again. She’s seeing patients and I have had 2 sessions per week for the past 3 weeks & gained relief with my SE. Initially shealso had me take magnesium glycinate, curcumin, and liquid B12. I also take CoQu10 which my pharmacist recommended at the onset of my leg cramps after taking my anastrozole for a couple of weeks. I hope this helps! Enjoy your Summer!,
0 -
count_it_all_joy My blood sugar is doing okay, but I'm super careful about limiting simple carbs. And, I get 1 hour of exercise every day.
I do have much higher cholesterol since being on an AI. A few years ago, I lowered my cholesterol by 30 points in 3 months, simply by adding a bunch of fiber to my diet. I ate homemade oatmeal-based granola every day, and it was magic! Extra bran (wheat or oat) can sometimes help a lot to lower cholesterol. However, no such luck this time---I tried this again, and no budging on my cholesterol.
The risk calculator that you shared is the type that's commonly used, yes, for sure. The decision about whether to take a statin is made after looking at a pretty wide array of data, and that tool is developed to weigh them all. The balance of LDL/HDL, b.p., age, and other things are plugged into the calculator to determine risk--I'm linking one here that my provider uses. Then, the next question is: How much does taking a statin lower my risk of a cardiac event, and how well do I tolerate the medication/statin; the usual risk:benefit ratio questions.
My PCP put the numbers through this tool, and she says that my overall chance of a cardiac event in the next 10 years is around 4%. That's a pretty darn low percentage risk. Her plan is to watch and see, and check my lipid panel every 6 months, in case it changes markedly.
http://tools.acc.org/ASCVD-Risk-Estimator-Plus/#!/calculate/estimate/
My daughter is an NP/Family Practice PCP, and her husband is an emergency room MD. They're kind and helpful about explaining these things to me, so I'm basically sharing here exactly what all three providers have explained to me.
0 -
JaneQPoppy, I have to agree with you. I didn't have these symptoms before the anastrozole either.
Stellawt57, is your integrative doctor covered by insurance? I had to Google what an integrative doctor does, and still am a bit confused by it.
0 -
whatjusthappened - yes, I failed the nerve conduction test, too. which I supposed was good news, since it meant there wasn't horrible nerve damage. But of course I still had the pain and numbness! Now that I think about it, it was actually an orthopedic surgeon that I went to next that recommended the NeuRemedy Plus, and said to try that before he did anything more invasive. It was working, so when I had my follow up with the neuro, she said to shoot for 6000 and see how I felt, called it the magic threshold for her patients whose symptoms were caused by B12 deficiency. and simply because your body needs it to restore nerve health. It definitely made the difference for me. It was more expensive to start - a bottle of 120 is $50, and I started out with 4 pills a day, then 2, then 2 every other day...that's my maintenance level now. If you look at their website, it is B12 in the form of Methylcobalamin, which the body readily absorbs. They add thiamine & magnesium, which also help with absorption, and address cramping. And B12/magnesium help with sleep. I sound like a commercial, but it has just been such a life changer. If that is just too pricey, someone else mentioned taking B12 liquid drops. Or I think you can get Methylcobalamin at the drug store. But this would be something you can experiment with on your own. Have you PCP order a B12 test - and Vitamin D. It's hard to maintain the proper level of D, and that helps with overall body pains, too. If you just want to test the idea yourself without another dr visit yet, you can order your own lab test from Sonora Quest.
You also mentioned stenosis in your neck, which I have, too. That could be causing some of your issues. Are you a chiropractor fan? Or do you do neck stretches or neck massage? Alleve for inflammation, ice and heating pad? Not to muddy the waters, but I had upper body issues that were resolved with the things I just mentioned (I had stenosis, and was rear-ended in a car accident.) You could be dealing with more than one thing, which makes it harder to pin down.
Not trying to diagnose. You may have something totally different that you are dealing with, and I know you'll run it to ground. These are just things you can do at home without a doctor to see if they help.
0 -
count_it_all_joy, thank you so much for all of that information. I am going to look at the NeuRemedy Plus. I think the stuff I'm taking now is a pretty low dosage and is probably not doing much for me. I have an appt with my primary care doctor coming up soon so I'll ask him if he can check my B12 and vit D levels. He's generally pretty good about ordering tests if I have a concern. I do know that I have had a low vitamin D level in the past and have been on prescription vit D before. I have taken it every day for years, but I don't know if my levels have ever come up in the normal range. We've never really followed it up.
I haven't tried a chiropractor. I do have a little shiatsu massaging pillow for when my neck hurts and I use ice from time to time. The thought of putting a heating pad on myself makes me shudder knowing that it will quickly bring on a hot flash. I was also rear-ended in a car accident, but it was so long ago that I don't know if it is the cause of my stenosis or not. Interesting that we share some of those experiences though. I'm glad the orthopedic was able to find a way to treat your symptoms without surgery, since my neurologist said you definitely don't want to go poking around in there unless you really need to. My orthopedic (treating me for a separate issue) had recommended I try an anti-inflammatory diet, which I keep meaning to try but haven't gotten around to yet...
0 -
What just happened- Yes, my insurance covers my acupuncture treatments. My Integrative Dr. specializes in treating cancer patients especially BC patients. She recommends various supplements, aroma therapy & acupuncture to reduce or eliminate SE symptoms. She’s a great listener (therapist) too!
0 -
What Just Happened: I have horrible burning pain mostly in my right upper back -- my cancer side. I also thought I was getting shingles. Mine started before i started the arimidex, though, and I thought it was due to the Kadcyla (but you aren't triple positive). I have been talking with my PT that maybe it is related to radiation and nerves that might have been damaged during radiation? It hurts worst below the radiation area but it still could be the way nerves branch.... I have been using lidocaine patches, Icy-hot, and massage. I am going to check this week if my acupuncturist is back to work and what precautions he is taking and see if I can get back in.
I do need to rant about the arimidex. I have always had cold hands and feet, and then got neuropathy from chemo which is making it worse. WHY DON'T HOT FLASHES EVER REACH MY TOES????????? I mean really, after all this it seems as though at least one of the side effects of treatment could have a silver lining of improving another side effect? It would be even better if the hot flashes started in my fingers and toes
I must say, this forum has been great for reading everyone's experiences. It seems a lot of people report the side effects are worst the first few months, which is reassuring to me as I am high risk so highly motivated to stick with both the kadcyla and the AI.
Thank you all!
0 -
Definitely get your Vit D levels checked. My BS strongly believes low D levels correspond to occurrance (and recurrence) of BC. I thought he was crazy since I'm outside most of my days, but then I was tested and found to have a level of 32! What?! How on earth? But he explained that sunscreen is what keeps us from naturally absorbing D. He does NOT believe in no sunscreen but does believe in 20 min a day of sun, if possible, a few days a week and he put me on 5000IU of D a day. My numbers went from 32 to consistently around 80 which totally thrilled him. And as a bonus, once I got my levels up I slept better and had fewer aches and pains from my Tamoxifen.
0 -
Hi YesIamaDragon, I'm on Tamoxifen, but I have the same upper back pain. I am being seen by OT for breast LE and she said my muscles are so tight from the radiation treatments in both the upper chest and upper back and that is causing the discomfort. I've only gone twice so far and she is trying to loosen me up. She said I have to relax my shoulder area and not tense up......easier said!
0 -
Flashlight, I would recommend finding a massage therapist who specializes in myofascial release, MFR, techniques. You likely won't be able to simply "relax" those tissues - tensing up your muscles isn't the only issue. Radiation literally cooks your muscles and changes the protein malleability of the tissue. (Compare a raw steak to medium-rare.) An MFR therapist has a good chance of helping lengthen the muscle fibers and help you regain some of your range of motion.
Here are two MFR practitioner directories, but there are others:
https://advanced-trainings.com/practitioners/
Good luck!
0 -
Miriandra
, Thank you. I will check it out!0 -
Stellawt57, thanks for the response. I looked up integrative doctors and found a few in my area. As much as I hate adding yet another doctor into the mix, it may come to that if I don't find some relief of these SE's. I'm going to systematically work through the various suggestions and see if I find something that works first.
YesIamaDragon, while I have experienced pain in areas that were not in the radiation field, everything is definitely more pronounced there, so I definitely think there is some nerve damage from the radiation contributing. I had a large area that was treated, including a portion of my neck, so it is possible that nerves "downstream" are being affected. I have had side effects of radiation in my muscles, lung, and esophagus so far, so I would be surprised if my nerves were not affected. I did just try the icy hot which helps a bit to drown out the sensation, on the non-radiated areas anyway. I made the mistake of putting some on the area of my scar to try to help with some of the muscle pain I was having in that area and I felt like my skin was on fire! Won't do that again.
I don't thing I've ever noticed a hot flash reaching my fingers or toes either, come to think of it.
lala1, that is great that you were able to get your vit D up that much! I sometimes think there must be a genetic component to problems absorbing vit D, since my kids have had low levels as well. I think the last time I was tested, my level was at a 24. I am also taking 5000 IU per day, and have been taking it for years. I also get plenty of sunlight. So if my levels are not in the normal range, there is definitely an absorption problem. I'm very curious to see what my levels are now that we're talking about it. I have a book called "Drug Muggers" that is written by a pharmacist and lists the drugs that interfere with the absorption of some essential nutrients. Arimidex is listed as one of the drug muggers of vitamin D, so double whammy there.
Miriandra, I second the MFR techniques for loosening up the muscles. When I was in OT, my therapist would use MFR and it helped immensely with my range of motion. Combined with home stretching exercises, I almost have full range of motion back. I'm not so good at keeping up with the exercises now (or the self-drainage) and I can really feel those muscles stiffen back up. I wish I could stay in OT forever just because having someone else work on those muscles is the best.
0 -
I agree, WJH. I do self-care too, but some angles really need a second pair of hands.
🖐🤚
0 -
Whatjusthappened, My Vitamin D level was low 33 just above normal after taking it for years. I read another post where they took Vitamin K2 with Vitamin D3 and it helped to raise their level. I've been taking the sports research brand for one year and will have my labs done in the next couple of weeks. Time will tell if it helped and I will post my results. K1 is the blood thinner. I would check with your doctor if you are on a blood thinner before taking it.
0 -
Flashlight, I do take the vitamin K2, hoping that it together with the Vit D and calcium will protect my bones and keep my osteoporosis from progressing on the anastrozole. I get Prolia injections for that as well.
0 -
Ladies-
I need help with something I can’t seem to conquer.
I have been on anastrozole 2 years and change. I have taken 2 vacations from the pill to get a handle on my dizziness I associate with it. Both vacations delivered the same odd results.
Dizziness didn’t really subside off the meds but some other side effects did. So I go back on Arimidex (just a few days now)and dizziness is almost all gone now. This is the second time this has happened.
Has anyone else had a similar experience or have any insight on this?
Thank you!!!
0 -
CBK- you and I have been on Anastrozole about the same length of time. I have not had any dizzines, and I'm sorry you have. Someone should chime in soon with their experiences. Best of luck to you.
0 -
CBK - I have not had dizziness with Arimidex (brand name Anastrozole), but it seems like everyone has different SEs. It sounds like you are not having dizziness now, which is good. With different drug combinations, supplement, lifestyles, cancers..... it gets very hard to sort out. Have you noticed any changes in BP? Sometimes mine drops from about 115/65 to about 90/50, and then I feel light headed. Never know if it is one of the drugs (including the BP drug), drug interaction, or jus one of those days.
0 -
BluegirlRedstate-
Anastrozole I believe elevates my BP significantly, when I’m off, it’s in completely normal range. So I can’t speak to what you are experiencing, although it would make sense for what you are describing for light-headedness to follow such a drop.
I imagine this is frustrating to you as well and I hope you can resolve.
CindyNY- glad to hear you are doing well on the pill!
0 -
CBK - I have a love/hate relationship with this little white pill. LOL. I love that it helps keep cancer at bay. I hate what is does to my body. I'm on generic Fosamax because of the osteopenia in my hip from Anastrozole. Its given me plenty of SE, just not the dizziness you're experiencing. 2 years 9 months to go, onward!
0 -
I have only been on Anastrozole for 2 months. Did anyone have side effects starting at 2 months? I feel a lot of hip pain and tightness.
0 -
Hi Berries!
I’ve been on for about 5 months or so. For me, it’s knee pain and stiffness. I just keep drinking water and keep moving. I find it’s worse if I sit too much
0 -
berries - the first time I took anastrozole, SE joint stiffness and locking finges almost immediate. So I quit after a couple of months. After fingers started clearing up I took tamoxifen. Well.... with a new cancer(my MO thinks it is new vs recurrence) I'm on Ibrance and brand name Arimidex. For the first few months no joint stiffness. Joint stiffness has returned and one finger locks up. Not as bad as the generic, but there. SEs, managing them, your MO's experience/knowledge are highly variable. I am trying acupuncture, and I think it helps with the stiffness. More recently trying electro-stim with the acupuncture. Just wish I could do it weeky to get a real sense of it.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
2016 ER+ left breast. 4 rounds TC Aug-Oct 2016 prior surgery. Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. MO said chemo did not do much to the tumor. Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.
6/18/2019 Noticed Swelling in R-arm. Suspected lymohedema or clot. Various Imaging and biopsy confirned turmor 9/2019. Started Ibrance and Arimidex. Tumor shrunk 2.5 cm Sept 2019 to 7 mm April 2020. Hope next scan shows that it has shrunk to oblivion
0 -
I'm actually having a lot of knee pain also! I am a runner (also 35 years old), so I thought maybe that was it, but they are sometimes shooting pains down to my knee. Is that normal? Just a little worried that I don't know if they are aches and pains caused by the medication.... or something else I should be more worried about
0 -
Hey Berries!
I’m older then you, already had some trouble with the knee (arthritis according to the PET scan when I was diagnosed in 1/19). After being on the AI it has gotten worse particularly when I sit too long and during the night. Bone pain is an SE of AIs, hard to say what is “normal”. Bring all your concerns to your MO. Keep moving
0 -
Definitely talk about knee pain with your MO. If you are able to consult a PT without having a referal, you might want to set that up as well. If not, ask the MO for a referal. It may or may not be associated with meds or cancer. 2 years ago my left shoulder screamed when I tried to do one weight lifting exercise, the other upper body were just fine. I had not lifted weights for about 3 weeks, exercises and weights were the same, I had missed a couple of weeks in the past here and there.without any problems. After a couple of months of not getting better, I consulted at PT. She diagnosed a "frozen shoulder" and gave me exercises. With each visit she added more reps and maybe another exercise. After a couple of months the shoulder healed. So I added the exericses as part of regular stretching and make the right arm/shoulder do them as well. Hope your knee clears up and lets you start running again.
0 -
Thanks for your input all!
It actually doesn't prevent me from running much at all. None of my "aches" do. I think I am highly sensitive to any twinge. I have no pain most of the time, but sometimes I'll get an dull ache that last a little while or achiness in my joints. This is all so stressful!
0 -
Hello everybody, I hope you are all staying safe. I have been on Anastrozole for six months now. My SE are gaining weight, worsening of existing body/joint pain pre-bc, I have very minor swelling of my right leg (per my primary not blood clot since not getting worst or better,) lump on my right neck (per my MO, its not lymph nodes) and trouble sleeping at night at the beginning. Over all the SE are manageable.
I am concern about the new pain on my lower left side of my back rib cage. I noticed this pain two months ago when I try to carry something on my side. This area only hurts when I pressed on it or put pressure on it. It must be a bone pain since its not tender to touch, you have to press the bone to feel the pain. No pain with movement either. My MO is not so concerned. Do any of you have experience this kind of pain in any part of your body.
0
