Anatropoloze has anyone having severe joint and stiffness in wrist and hands since taking this medi

Pokey1975

Anatropoloze has anyone having severe joint and stiffness in wrist and hands since taking this medi

Pokey1975

Thank you, I have been prescribe two different types, which has their own side effects. This is my second time I have been on Anastrozole. The first time was right after my chemo treatments my joints start to hurt so
bad I thought I had RA.My oncologist took me off for a month, no more pain. I later was taken off and tried two different prescriptions . I moved to another state my new oncologist put me back on Anastrolozole. I been taking it since October 2017

legaljen1969

@Pokey, was 2017 the second time you started Anastrazole? If so, you should be getting darn close to the end of the time you need to take it. It seems like, from most of the people I know, it's part of a 5 year plan. So, 2022 will be your 5 years. I hope you are able to get off of it then.
I am just barely over a year on it. I have at least 4 more years to go.

I wish you luck in ridding yourself of the pain, or at least in finding good strategies to mitigate the pain. Tylenol? Ibuprofen? I have found if it gets particularly bad, sometimes the unscented Aspercreme with Lidocaine is helpful. Again, always check with your onco.

Pokey1975

Yes, 9/2022 will be my sixth year on one of another hormone blockers I started on Anastroloze, tamoxifen, and Amidex, now back on Anastroloze. However, I feel this is the worst the pain has been. My oncologist had a bone scan done to see if it was something else causing the pain. The pain hits me early in the morning and calms down a little during the day. However, my knees hurt also that is why my oncologist requested a bone scan be done. It was clear.

Dltmoll

My joint pain was so bad on all three of the AIs that I was put on Tamoxifen, which has worked out much better for me. Altogether, my five years were up in December, but I'm on the ten year plan, if not longer. I think it's going to come down to what you feel you can tolerate and for how long. When we were considering the switch to Tamoxifen my breast surgeon was adamant about the fact that my quality of life had to be a consideration in all of this. I wish you the best in getting to a place that works for you.

MarcieB

I have been taking Anastrazole since August of 2019. I feel a little achy in the morning (some days more than others), but it usually lifts pretty quick. Sometimes I will experience a sharp pain in one of my knees, but that doesn't last either. I have not felt any discomfort in my fingers or wrists - ever. If I do I will ask to be switched because I am an artist, I need my fingers to work right.

I really have not been on it long term, but my doctor did say I should stay with some form of estrogen blocker for 10 years. She said the old opinions were that 5 years was sufficient, but recent studies have shown the longer time increases your chances of remaining cancer free.

I'm hoping I don't get worse side-effects. So far the one that bothers me the most is thinning hair.

Pokey1975

I am on the 10 year plan also. My oncologist told me the same thing . She requested an Ct ,bone scan, and blood work. Everything was clear no signs of the cancer being back. However, until 3 months ago I did not have this severe pain-in my knees or hands/ wrist.. I am trying to hold to the belief that this too shall pass.

ChicagoSandy

Arimidex IS brand-name anastrazole. Some people can switch to another aromatase inhibitor (abbreviated AI) and get fewer or milder side effects. I'm on letrozole (brand name is Femara) and have been since 11/31/15. My onc wants me to stay on it through 2022 (7 yrs. total). Very mild side effects, lessening over the years. The third one is exemestane (brand name Aromasin). No way to tell which one will be easier on you unless you try.

I do have one pet peeve, though--it's about misspelling the names of drugs. I can excuse misspellings caused by having to type on a mobile device's onscreen keyboard. But otherwise, if the same misspelling occurs more than once in a post? That's either laziness or illiteracy. Every time I see stuff like "tomoxofin" I wanna scream "Read the label on the bottle!" I realize not everyone has the capacity to educate themselves about all aspects of their own life-altering disease. But at least learn the names of what drugs you're taking--they're right there on the label.

legaljen1969

@ChicagoSandy, so glad to see you back and contributing to the forum. I am glad you didn't leave for good.

coolteach51

Bromelain supplement! This was recommended to me while at CTCA. I take 2 each day (500 mg each a.m. and p.m.) on an empty stomach and my body definitely lets me know if I don't take it! After a few months, I dropped it to one each night and that seems to be enough to stop the feeling of arthritis in my hand and arm. Hope it helps.

MarcieB

ChicagoSandy, has someone poked your critical bone? First we get a lash out from you about posting an Easter message, and now a lecture about spelling? You are obviously a doctor and knowing the correct spelling for names of drugs must be second nature for you - not so much for us lay people. I couldn't care less how my drug is spelled and that's the truth. I am diligent about taking it properly and I know exactly what it is for, but if I am in the middle of writing something I might cop to it's definition - like estrogen blocker, instead of it's formal name. You have a lot of knowledge and I appreciate how you help us understand the nature of what we are collectively fighting. But,I hope you lighten up, we are not enemies here.

legaljen1969

@Marcie. Oops, you made a mistake. LOL SHE is an attorney. Her husband is a doctor. Either way- powerful professions with lots of knowledge. This week, based on many experiences, I am pretty sure that being hypercritical and unkind is one of those things they teach throughout law school. Though, having been involved (not as a party) with lawsuits where similar medications are misspelled or entered, I can understand her frustration and concern. Still, to the layperson, we all got what Pokey was saying.

MarcieB

@legaljen, ....oops...Lol! Oh, well, the essence of my message stands - lighten up.
Jen, I think I may have made a bigger mistake than that? I am no longer receiving any notifications when someone posts on a question I have reacted to? I think maybe the new moderator has signed me off? When I made that silly rant post about being invisible, I did say maybe I pissed (rhymes with kissed) him off..? and added the feeling was mutual...(yikes). So I now see that sometime yesterday he posted another *Introduce myself* blog and made a special point to thank you and Carool for keeping the site going, when even Carool will tell you it was me who initiated making commitments to post on a regular basis. If you go back to Renal Cell's original post (somewhere around March 31), you can trace it and see. And I am the one who made a point to notify you to help us because I knew this site was as important to you as it is to me.I don't need a pat on the back from anyone, but it seems like a deliberate snub to me and that is the part that hurts. And now I am not being notified? I want to tell myself it is all just a coincidence, but I would be lying if I said it didn't hurt me.

hscancer

Pokey, Anastrozole is made by three different manufacturers, one of which is Cadila in India. Others are Teva and Accord. Cadila has had multiple FDA warnings which they seem to have ignored. A change to a different manufacturer may help; this may though mean changing the pharmacy where you get your Anastrozole.

legaljen1969

@MarcieB, as far as I am concerned, you have done NOTHING wrong and NOTHING to deserve to be silenced. I, on the other hand, am a loudmouth who has been put in Facebook jail on three (3) occasions since the beginning of the year. 5, 15 and 30 days.

I am sorry this situation with the moderator has happened. I hope you know that I do, of course, know that you were the one who suggested and prompted us to get this thing up and running again to help others and to honor Greg's active role as moderator and conversation starter. I know you were the one to rally the troops to get us posting again. I am sorry this seems to have all gone awry. I am hoping you don't think I am trying to take credit. I didn't even see his post thanking me and Carool. I guess I just thought he was reiterating the same stuff over again.

MarcieB

@hscancer, that is very good information. How can we find out which manufacturer our pharmacy uses? Will they tell you?

@legaljen1969, Of course I don't think you are trying to take credit, you never said anything about it. I wouldn't even have known about Colby's post either (since I am no longer being notified), but I checked the questions and when I saw the first words about introducing himself again I read it because I thought it was strange for him to be posting an introduction so soon after the last one he posted. I am hoping it is something weird, like maybe I changed a setting without realizing it? BTW, I once was in FB jail for 30 days too, and I might be headed there again soon. ;-)

legaljen1969

@Marcie, I am thinking they won't let us go to "jail" together. Too much mischief. I guess they will have to put us in different "jails." I am not confident I can stay out of FB jail. I am going to try, but my pattern for return is too great. It's always the people that NEED to be in FB jail that stay out (for that matter many of them should probably be in a real jail).

hscancer

@MarcieB, If you call any pharmacy, this is information they can tell you.

ChicagoSandy

MarcieB, we don't have to memorize the correct spelling of the names of the drugs we take--because all we have to do is READ THE FREAKING LABELS!!! There is NO excuse for repeatedly misspelling the name of a drug whose bottle we stare at EVERY SINGLE DAY. But in a world where people increasingly use text-speak, emojis instead of words, and ditch entire parts of speech (e.g., "because internet"), I guess I should no longer be surprised that literacy is a dying phenomenon. And no--I'm not a doctor (though I'm married to one), but I DO read.

ChicagoSandy

Aaand....I'm out of here again. This is not the only cancer website on which I post, but it IS the only one where I am increasingly made to feel uncomfortable both for advocating simple medical literacy (about our OWN health) and for resenting being proselytized on a site where religion & politics have no place. Bye.

Maryflier

Chicago Sandy. I’m sorry to see you go. I appreciate your knowledge and helpful advice.
Pokey 1975. I was taking Anastrozole in 2018 for 3 months when I began getting terrible hand and leg cramps. I switched to Exemestane and haven’t had any debilitating side effects since. I hope you find a medication that works for you. Stay strong.

Pokey1975

I just received a text from my doctor it isn't the Anastrozole( hope I spell this right) it appears I have Lupus. Can anyone give me any information on how they deal with the pain?

ChicagoSandy

Pokey, so sorry to hear you have lupus--hope your doctors can find the right mix of anti-inflammatories for you. Lupus is one of the few diseases for which hydroxychloroquine is appropriate, BTW.

My latest rant was based on the fact that our being here on this site is evidence that we are all in for the fight of our lives. Maybe it's just me, but wouldn't you want to learn all the correct information you can about your cancer and your treatments, so you can be a true partner in your medical care? At 70, I still remember the days when I had to nag one of my doctors (via his nurse) to tell me the actual names (never mind the spelling) of the pills his weight loss clinic was handing out--until I told them my husband was then a med student and I was in law school, they called the pills "the pink one for your appetite, the blue one for your nerves, the gray one for your metabolism, etc." They weren't even in labeled bottles: they were in little plastic baggies marked with instructions for how & when to take them, which baggies were in a brown paper bag stamped with the doctor's name & phone number, with the date & my name handwritten. And don't even get me started on my (male) GYN back in the early 1970s.

I thank my lucky stars that we women have by and large successfully fought the good fight to have our doctors stop condescending to us, have online patient portals where we can access all our treatment information. and that all we have to do to find out what we're taking is to read the labels on the pill bottles.

The rant about Easter was specific to that holiday (actually most of "Holy Weekend"). Christmas and other Christian holidays were never emotional triggers for me. (My husband and most of my friends are Christian, some of them even Evangelicals). It has to do with the historical connection between Easter and the Eastern Europe pogroms against Jews--perhaps the main reason my then-surviving ancestors emigrated from their "shtetls" between 1900-1910. That's why, when I am told to embrace "the message of Easter," I am reminded of the Easter message the Polish & Russian peasants delivered as they marched, torches in hand, to the homes of my ancestors: "Jerusalem is lost." That "message" began after the failure of the last Crusade, as a justification for anti-Semitism all the way from the Inquisition in western Europe, to the eastern Europe pogroms, to the Holocaust.

ChicagoSandy

My last post didn’t contain a “phone number,” but a date span instead—because it had a dash & digits, the WhatNext algorithm incorrectly thought it was a phone number and redacted it! Let’s try this again: “....between 1900 AND 1910...”).

petieagnor

Gosh!
@Pokey: I'm so glad you have an answer for all of your pain. I have Fibro, but for years I was told that it was all in my head. My parent accused me of being a hypochondriac for attention. I understand.
@ChicagoSandy: I've stepped back at times because of the same issues. Everyone needs to chill. I've been ripped up, too. I just keep in mind that they are having a REALLY bad day & don't take it personally. Some people just engage their mouths before (you fill in the blank). Cancer sucks & we all should be mindful.
Greg is gone & the people administrating the website are learning, too. We cannot afford to keep losing people.

MarcieB

well, bye-bye,CS, I hope you find a site where no one accidentally offends you when all they are trying to do is extend a message of love and hope. And lets hope they are also not so thin skinned as to be insulted when you correct their spelling of medical terms. Good luck to you!

legaljen1969

Marcie, Sandy wrote her last post about three months ago so it's not like she came back to rant about things. I think some others just discovered the question recently and brought it back to life. Maybe she's posted somewhere else I haven't yet discovered.
After reading a little more history and taking time to consider all that she said, I really can understand why she was upset about the Easter post. There is a lot of history that we as WASP women take for granted that it occurred the way we learned it. There is so much history I never learned in grade school or college. As I learn more, I understand more.
I think the rub comes when we don't know someone else's history and we say something that makes them (generic you, them, they... whoever is the one offended) angry and they automatically make the assumption that we (general "we" meaning whoever is the one who said the offensive thing) are willfully biased against them in some way. When they call us illiterate and ignorant, it doesn't exactly garner interest in what they want us to understand about their story.
For instance, I was pretty ignorant about immigration (just meaning I didn't have the knowledge and understanding about many facets) until I read my grandfather's handwritten life story. I read about how he escaped from a POW camp in WW1 and was a stowaway on a ship and made his way here to America and he was having to hide for awhile until he could get everything situated to get his proper papers and later become a citizen. Well, now the immigrant story is part of "my" story too. Yet people look at plain little white bread me and "assume" I know nothing about what an immigrant ever experienced. They "assume" with my blonde hair and blue eyes that I am everything that is wrong with this world and I am a racist and I stem from some hateful bloodline like my family was Nazis or something. It couldn't be further from the truth. Sometimes we just need to learn someone's history, hear their story and how it impacted their life. Then it becomes a part of our understanding of the world and we all grow a little. However, the world only grows and becomes united if they are willing to hear our story too. So many need to have their story told, but they are not willing to hear the story of how someone else got where they are.

MarcieB

Jen, we all have history and stories that make us who we are and react the way we do. You and I are Christian, but I am always pleased to see a message of love from ANY faith, or even any ethnic background. Do you bristle and and tell people you are offended if they post Happy Hanukkah? Happy Kwanzaa? So, yes, I am calling CS out on that - it wasn't necessary. There are people (some I know, some I don't), who post things on Facebook that are offensive to me all the time - if I responded, out of my own beliefs and experiences, it would only ignite a torrent of argument, so I simply scroll down. Of course we learn and grow from knowing people with different stories, but those stories can be shared gently - not hammered at us like we are stupid if we don't get it. Nor should those stories be used as justification for bad behavior.

I know this was all posted several months ago (I probably missed it because we were not getting notifications) ;-) So, I just recently read it and felt bad all over again for the person criticized for mis-spelling. Talk about not knowing people's stories? Pokey 1975 could even be struggling with a reading dis-order for all we know? Again- it wasn't necessary. Neither the complaint about a faith based well-wish or the belittling of a person's misspelled post, was necessary. Or helpful. Or uplifting. Or kind. So I maintain there is no place for it here. And I have to say I was surprised to see CS say she was leaving - again. That girl does more exits than Frank Sinatra did in his retirement announcements.

legaljen1969

No, I don't bristle when other people post a greeting more suited to their own beliefs or faith tradition. Some believe in a higher power and some don't. Some believe in the same higher power as I do, and some don't. I think people should believe in what gets them through the day. If it works....
I mean, of course I believe in MY beliefs and I am happy to share my journey and my beliefs with others. Of course I think they are the beliefs that work best (at least for me).

Yes, the belittling is the part that bothers me most. It bothered me far more than her getting upset about the Easter message.