Arimidex - Coping with the SE's
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I have quite a bit of problems with joint/bone pain. My knees make a lot noise when I move around compared to before going on Arimidex. I had to have an oopherectomy and was switched from Tamoxifen to Arimidex and have been on it for approximately 8 months. I am worried that all the cracklling and popping along with all the pain may be a sign that Arimidex is already starting to harm my bones. Anyone know anything about this? My oncologist plans to do a bone test in a few months when I see him again.
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Cowgal did you get a Dexa scan before you started Arimidex? If you did not with all of your popping and crackling I would ask for an order for one now for comparison. The test is painless and gives lots of information. I creak and crackle but I think I am way older than you.
GInger
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HI Cowgirl,
Arimidex can cause both arithritis and bone loss (are we having fun yet?), but pain in the joints just means you probably have some arthritis, which a lot of us get while on AIs. According to my onc, bone loss is usually glacial in its pace and can only be detected through a bone density scan, which you should defintiely get done so you know where your baseline is and then it should be done annually or every two years (different oncs have different protocols). I get mine done annually. I am only one year into AI, but I already experienced some bone loss, but since I started with excellent density, it is just something my onc will track.
I also have had plenty of new aches and pains in joints. Try lots of things - diet, exercise, NSAIDs, to see if you can improve how you feel. My onc has me take 1,200 units of calcium and 1000 units of Vit D daily, which can also help.
It is definitely a challenge, but I have steadily improved even through I am not my old self. I hope that you feel better soon! Also, since I am no doc, you should follow up with your PCP or onc if you have any serious concerns.
Hi Serenitywisdom,
I hope that you just give yourself time to adjust - it sounds like you have been through a lot lately. Sorry to hear that the herceptin caused you heart problems! I suspect you need rest and maybe the meds are adding to your tiredness. Please listen to your body, take it easy and talk to your PCP or onc if you are really concerned. When I finished up chemo, I just expected to snap back to the old me, but it was not to be - I had anemia and neuropathy both of which took months to improve. I finally got my head around the fact that I just needed to take it easy and work my way back slowly. Now, a year plus after active treatment, I am so much better!
For me, Arimidex gave me the opposite problem - insomnia which has abated since I have now been on it over a year. We are all different so I hope that this drug is gentle with you. Best, Beau
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Hi everyone,
I have been on Arimidex since November, 2010, and noticed my GI reflux getting a bit worse. I wasn't very well-controlled to start with, but my throat is sore all the time recently. Has anyone else noticed this as an SE of Arimidex, along with sore knee, trouble sleeping, constipation and hot/cold flashes? I wonder what's next.
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I am using Miralax for constipation...works well, but mild, half dose at night. My MO says that Arimidex does not block ALL your estrogen, that seems to be a concern of a lot of ladies. It seems the body is constantly making estrogen on its own. Mild hot flashes at night for me, but I am doing well on it, now for almost 7 months. I have aches and pains, but hard to tell if it is a SE. Have a good night , ladies
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Thanks Gingerbrew and beau for you comments. I asked my oncologist when I started on Arimidex if I needed a bone scan. He told me that I would have one at my next visit, which is in April. I can't remember what his reasoning was then. My husband thinks it was because of me being relatively young (I have just turned 48)...maybe since I was not menopausal until they did the oopherectomy that played into his decision. Anyway, I have tried a lot of the suggestions I have seen on here: glucosamine, exercise, Claritin, gluten-free and I have not seen any benefit. I am taking Calcium and Vitamin D. I am trying to find someone to do acupuncture. I guess I am just pretty frustrated because I can't seem to get the problem solved and I think it is why I can't sleep and definitely has hindered my exercise and my horse riding (I use a stool now to mount and I am in equal or worse pain actually dismounting as I am in mounting my horse). I know that Arimidex is the "big gun" in preventing reoccurrence so I don't want to stop but I definitely want to find something to help tolerate it better than I am doing.
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Just adding my 2 cent's worth--I've been ususing Jojoba oil (not organic necessarily but certified pesticide free) for dry skin. I started a year before having recon done (about a year, year and a half after starting arimidex) and it has worked well for me. I also use it to make my own shower soap (1 part jojoba oil, 3 parts pure castile soap (I use Dr. Bonner's as it's easy to find and comes in unscented) as well as using it plain or mixed with coconut oil (about half and half, but I'm still experimenting with that one). I like being able to add essential oils to suit myself and make small batches so I can change scents as the mood strikes me. The coconut-jojoba mix seems to work especially well on the tougher areas like heels, elbows, cuticles, knees. Yes, I do still have dry skin, and I do still get the "winter itchies" but not as badly as I used to.
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Cowgirl, Perhaps your MO can switch you to another ALS like Aromasin and see if you tolerate it better. I forgot how long you have been on arimidex. Some posters have said their SE's improve within six months. Hoping you find a solution.
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cowgirl
I think you will find ACUPUNCTURE can really help your knees - mine were creaky b4 taking Arimidex ( I'm going to be 67) - and NOW, acupuncture once a month, and all the other things you've listed - my knees feel BETTER than they did years ago.
Acupuncture really seems to help the inflammation, osteoarthritis - hope you find a good one.
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I have to agree with Sunflowers-acupuncture helped my knees, too. And thank you Sumflowers for suggesting it to me way back.
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Oh, SunflowersMA, I forgot to report. The pain on my inner right thigh muscle (adductor) finally went away. It disappeared probably by 2 weeks after I stopped acupuncture and PT. I do think it was the acupuncture that did it, not the PT as the PT was primarily stretching and exercise. He had told me the relief may be on a delay switch! I need to reach out to my acupuncture doc to let him know as he was pretty bummed when we decided I should stop going to him because I wasn't getting relief. Now I'm thinking I need to do as you do and go monthly for maintenance.
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Hi, patoo
I stopped acupuncture last year for a few months - cuz I "felt good" - ah, isn't that so typical (especially known to any of us who have taken, or take antidepressants "oh, I feel good, I can stop now." NOT!) The lack of energy, creaky knees, general lethargy crept up on me, and after about 3 months - I was back to my acupuncturist.
The monthly routine really seems to work best for me. Tho, telling the real truth, if I had an unlimited budget, I'd go more often. Acupuncture is a real contribution, catalyst for my well being, healing.
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Just had appointment with MO today-I will have an oophorectomy followed by anastrozole. Why are AI's given if ovaries and fallopian tubes are gone? I'm sure there's a valid reason, I just don't know what it is.
I love all the suggestions on how to deal with se's.-what a great thread. Thanks!
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Spunkyboobs, the body still produces estogen in the adrenals and fat cells.
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Acupuncture, acupuncture, acupuncture! Can 't recommend it highly enough.
Susan0 -
Hi all,
I know I should read further back on this thread but I am being just plain lazy. I am on my 4th month on generic Arimidex and just started having tingling/itchiness on palms and soles of feet. Also, arms and legs feel a bit itchy and sensitive, as if I'm wearing wool, which I never do because I'm so sensitive to it. No rashes or dry skin. Hands and feet feel a bit swollen but don't look it. Have a call in to my MO. Any suggestions?
Caryn0 -
Actually I would suggest that you do go back and read through a good bit of this topic. Also in the general area of BCO you will find info specific to the AI's
I suggest this because you may find that you get other unusual side effects and will know what to expect and what may help you.
Ginger
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HI Caryn,
If you hands are tingling, maybe you have a bit of carpel tunnel in your wrists - that happened to me after about 3 months. I wore wrist splints and took some NSAIDs, payed around with my diet (less dairy and wheat and alchohol to see if it helped with general inflammation) and it slowly subsided. The intchiness could be from general dryness - lots of folks swear by coconut oil or cocoa butter here. I also have a mild case of rosacea/exema which can cause my face or cretain patches of skin to itch so I reccommend OTC cortizone Exema cream that really helps me when scaly patches crop up.
My feel are often swollen too, but I don't really notice unless I ry to wear some of my fancy shoes and they are so uncomfortable,, but I weat them anyway for short periods of time because they were so expensive.
I do take an NSAID when needed and 1/2 a blood pressure pill most days since it helps keep my b/p down (it has gone up since being on Arimidex) and reduces swelling. If there is anything that really concerns you, go see you PCP or call your onc. Good luck!
Best, Beau
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Has anyone noticed any changes to their fingernails? I never had great nails to begin with and didn't have chemo so I keep them short and neat but lately even very short they just shred. I can't get them any shorter! And I have hangnails for the first time in my life. Is this a SE?
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Does anyone know if we still get the side effects from Arimidex once we have finished our time with it.? I have taken it for over 8 1/2 years and my Onc is telling me to stop after I finish my last week of pills. However, he says we get to keep the benefits of it in our body for another 5 years. Does this mean, we also have to still put up with the side effects? If it will still be active in our bodies to protect us from bc, I would think it would still give us the same side effects. I use Replens for certain problems once a week and would love to be able to stop it after stopping the pills. Just wondering what to expect. Thanks!
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perky: I've definitely had chippy fingernails and too many hangnails since starting AIs. The nails had begun to recover from the dryness of chemo, and were getting stronger, but started a downward spiral when I switched from tamoxifen to AIs. I am trying to hydrate from inside (ie. tons of fluids) which helps and I have overhauled my eating and nutritional supplements -- lots of protein, lots of vegetables and fruit, little carbs (whole grains only) and almost no alcohol. I used Penguin Cold Caps throughout chemo, so had a full head of hair through chemo but some of it became dry, so I've been taking biotin and silica to improve hair and nails. I feel like I file them every day and they still seem chippy.
Susan
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My nails are back to normal, even growing a bit faster than they used, no dryness or ridges. I actually prefer my nails short, but have been keeping them a little longer just for the convenience of not clipping/filing them so often.
The two big SE's for me are joint stiffness and the numbness/burning in my fingers and wrists. I sleep with wrist braces but it only helps a little.
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My nails, strangely, have gotten even stronger, and I think it's all the Vitamin D3 and calcium, magnesium supplements. My fingernails growing faster than before too. If you haven't yet, have your Vitamin D blood levels checked.
TheDivineMrsM - have you seen a physical therapist about yoru hands? When mine were so bad in the early days of A, the treatments she gave me and the EXESERICES she taught me halped so much. Also, I know folks are going to get tired of hearing it - but acupuncture took away the last of the neuropathy I had. Still have problems with my hands, fingers if I do something very strenuous for too long - then I need to really stretch, and massage them.
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Wow I wish we had someone where I live that does accupuncture so many of you ladies are saying it really has helped with the knee and wrist pain. Unfortunately that is not an option for me living in a small town. The nearest one I'm sure would be at least 75 miles away to the south or north. If I could even find one then. Living in the deep South does have it's disadvantages at times.
I also take the Vitamin D but my fingernails and even my toenails have become very brittle and dry and break easily. They are hard and grow fast but they are so dry they split and break. I just end up cutting them off short. Even my hair is really dry and I condition it all the time. Guess I will have to deal for another 3 yrs.
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Mimi - you MIGHT be surprised, I live in a very small town in Southern Utah (not exactly known for alternative thinking) and we have two people here who do acupuncture!
And on the nail front - horrible time with chipping and splitting. I did have chemo, and they mostly fell out, but now I'm having problems. I take Biotin, and VitD3, and Calcium, and still.....
Jenn
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Hello, ladies! May I join you? I just got back from my first visit with my MO. He will be putting me on Arimidex once I'm done with rads. I'm almost 65 so there was no doubt to him that it would be this drug and not Tamoxifen. The only SE I'm really concerned about is the possibility of bone loss. I'll be getting a baseline bone density scan just before I start the meds, then periodically during the course of TX.
I really want to thank everyone who has posted here...it has been a great help to me. I'm working my way through all the posts...still have a way to go but already I've learned a lot of what to possiblly expect and how to handle different SEs.
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Anyone who hasn't had a vitamin D blood test - and is having problems with nails, might be surprised at the results. Even tho I take more than 5,000 ius a day - my blood test was only at 38. If it doesn't get up near 60 within a few months, I plan to have parathryoid tested too.
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Took first one last night; will be getting mx and DIEP May 1 on DH's birthday. The delay is because of a 40th anniversary trip to Tuscany, plus my 2 ILC are nonagressive, ER/PR+ and nodes are looking clear. BS said enjoy the trip.
I'm hoping not to have the horrible SEs of Armidex some of you are suffering from, and will continue to exercise and will add fish oil and magnesium, extra calcium and D from what I'm taking. Any other tips to start?
Only took the one pill....but my arms are feeling weak this morning. Any thoughts from you experienced ladies? Never had this before.....
Won't be able to do strength training after surgery for quite a while! 0 -
Chris13 the SE's do get better with time and some even go away. Everyones are different and I have had some friends that took it and had none of the SE's at all. For example I haven't gained wt. on Anastrazole, I have actually managed to lose about 17 lbs. But I gained about 25 lbs on Tamoxifen which has steroids in it. I had really bad headaches for a while but they seem to be lessening over the last couple of weeks. I also personally take my pill at night along with my Effexor for control of hot flashes. I would much rather have that control at night than take the meds during the day. However I'm sure everyone is different. Good Luck.
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