Arimidex - Coping with the SE's
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37antiques - Have you checked with your endocrinologist about the hyperparathyroidism? I was diagnosed with hyperparthyroidism too - am seeing an endocrinology surgeon tomorrow. I recall one of the docs asking whether I had had bloody discharge from my nipple, but to be honest, i can't remember which one. Maybe just check with your endocrinologist?
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HI Don23,
I think what works for one person may or may not work for another. I am experimenting with cutting back on my coffee (plus alchohol which I had cut our for a while, but with the summer, it has been creeping back in with a margarita here and a sangria there,,,). There are some folks here who wrote that coffee affected them negatively. So I have decided that some days I like my tea just as much. I don't plan to give up coffee forever, but I am experimenting to see if I feel better without it. I will post back here to let you know if it helps me.
Are you having a lot of joint pain?
Best, Beau
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Thanks ladies! Sas not to worry. I have my pharmaacist on the job of checkingout all the interactions. She runs it through two different programs and is brilliant. I am waiting on my blodd results from last week as well as she wants to run them withthe drugs I am taking. The plavix (for the stent) is causing major bruising...making me very reluctant to add another drug to my regime...anything that is knownto cause heart stuff is Not going into me. Period.
I agree with Ruth...exercise is not only good for weight and joint action but also for emotional stability and sleep:)
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37antiques I have not heard those SE for Arimidex. Bloody nipple should always be checked out. (BTW that's how I found out I had breast cancer). It could be some benign issue like a papilloma but it still needs to be removed by a BS. I would make an appointment with your BS and also inform your onc about the bloody nipple and the bone pain.
I get stiffness with Anestrozole (generic Arimidex). It started exactly at 3 months.
I'm hoping your nipple is just some benign issue.
don23 I do almost no caffeine and I still have stiffness. Not sure if caffeine has an effect.
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Thanks for all your thoughts on the caffeine. I guess I could maybe cut down a little and see if that helps. I don't think I could ever completely give up my coffee!
Beau - the worst of my joint pain is in my hips. Some days it is worse than others. I think my other pains might be a little arthritis - a little Arimidex. Not sure.
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37antiques: I had hyperparathyroidism for years, then a parathyroidectomy in 2002 (removal of a benign tumor and one parathyroid gland, we all have 4)....I had absolutely NO symptoms whatsoever BEFORE surgery (just the calcium levels were too high for too long, we didn't want to wait any longer)...AFTER the surgery, I had pseudogout (pain in all joints/bilaterally) for a YEAR afterwards! I have had high PTH again, normal calcium levels. Endocrinologists (2) had NO clue what was causing the high PTH, but I kept mentioning my vitamin D deficiency, they pooh-poohed that...well, I upped my dosage of vitamin d (5,000ius daily now--d3 only, d2 does nothing in those high prescribed doses)...and my pth level is normal.
Nipple discharge I'd always heard one should act on that ASAP, hope that you can get that checked out quickly, and the rib pain is hopefully (?!) from the anti-cancer drugs.
I definitely have mega bone pain in feet and knees and hips, started on Aromasin, and mega hair loss as well (I just condition it real well and don't comb it, just scrunch with leave-in conditioner).
Good luck again, as said, everyone is so very different in how they respond.
BTW: Had 5th year mammogram today, is totally fine, and I do not need the 'extra' squashes every year now~~~~YAYYYYY! (But was told by head of the breast clinic that if I WANT the extra ones, she will get it approved by insurance, and as she always does, will go over the results personally with me as she did today)...and bone density scan...can't wait to see that one...ugh.
~juli
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Juli- congratulations on the mammogram!!!!! 5 years is a huge accomplishment!
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Thanks for all the input. I was hoping maybe something to do with the parathyroid, I can't get in to see the endo until September. I hate specialists! They take so long!
No return call from the onc yet. I was completely expecting joint pain, I am hopeful that the ribs can be affected too. I see a scan in the near future, yuk! The nipple discharge was just coming every now and again, very unpredictable, so they could never get a ductogram or anything useful on it. I thought I'd start with the onc first, but if I don't hear from him by tomorrow I will move on to the next doctor. Poke poke poke!!
Congratulations Juli! Hope the bone density scan goes well too!
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Juli congrats on your 5 year mammo!!! That is awesome.
Tried yesterday to get an appt with my PCP but the receptionist said there wasn't anything until thursday and they don't have a wait list for cancelations
So I called my PCP's nurse back today and managed to get an appt in to see him tomorrow.. I still have the headache and the results on my thyroid are back..I just told her I would get them when I see the doc.. I need to figure out something for the headache.... if we can't figure it out, then I call the Onc and switch to the Femara.... the fioricet has been taking the edge off but I really am having trouble functioning at work taking it (couldn't count back money today and if I bend over to get something I get real dizzy) . Hopefully, I get some clue tomorrow...So the headache will go away, right??? If I stick it out a little longer? 0 -
I so need a new bed. Our bed is way too hard and I can't sleep in it with all of this hip pain from the Arimidex. I have tried everything to soften it up - memory foam pad, extra cushy mattress cover, etc.
I have mentioned this to dh 3 times now and he still hasn't responded so I am going to have to drag my tired arse out of the house and look at them and report prices back to him and see if he will buy it or not. Besides I need to switch to a King size because these hot flashes make it almost unbearable to sleep near him.
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37antiques--the ribs have joints where they connect with the breast bone and with the spine, so rib pain does come with the AIs. These connections are joints in the anatomical sense of areas where 2 bones connect, we don't think of them as joints because they don't have a lot of visible motion like the shoulder, elbow, hip, knee, etc.
Julie--CONGRATULATIONS!!! 5 years is a great milestone!
Jancie--I have memory foam on my mattress and I still get hip pain at night. I'm a side sleeper so it makes for a lot of tossing and turning. If you aren't a side sleeper the memory foam may help. I have a 2 inch one, maybe a thicker one would be more helpful?
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Jancie..... I have a Sealy pilow top mattress. Beyond comfy, yet has the support I need. You need to be the one to haul your butt to the mattress place, as you are the one not sleeping.
(I got mine on Craigslist. Brand new as a guy had bought it in an attempt to save his marriage, but alas, it was in vain.)
I hate most foam, and I think also very warm.
I think a trip to the mattress place will be enlightening. It was when my ex and I bought a mattress. Couldn't believe the difference.
I also learned that you don't need top of the line either. You don't want to do cheap here, but at a certain point, more money does not get you more comfort, just more expensive covering fabric etc. So mid range is probably fine.
Mattress places have sales all the time too. Worth getting a deal and make sure it includes hauling away the old one. You don't want to be doing that one either.
Good luck and sweet dreams. - Claire
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Talking about mattresses...DH and I went into one of our local mattress stores and somehow my breast cancer was brought up... they offered me a 30% discount on the mattress I wanted... just a thought if you go looking and the price is a little too high...
Edit:Tina: I am on my second round of arimidex on week three (took it for 2 weeks then onc had me stop for one week, now on it again) - without the fioricet its still the full blown headache... hopefully today at the docs we will make a decision on if there are any other meds i can take for the headache...
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Jancie
I SWEAR by the IKEA mattresses - foam, latex, super memory toppers, a HUGE selection of them. They are SO, SO, SO much better than the "foam" ones I've seen in "regular mattress stores." I would never go back to a box spring, and mattress with springs again. They aren't as expensive as the ones in mattress stores either. Nothing like the "plain" foam sold in stores. They ahve a good website, but even better to go to store & try one. Good luck.
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I LOVE my sleep number bed, it's like sleeping on clouds. I 'm a side sleeper too and foam doesn't work for me since my body sinks lower than my arm and puts it to sleep. I like that I can adjust the softness or hardness. When I feel achy, I like a low number-- 25 but at other times I'll go up to a 45. I've had mine for about 10 years and wouldn't ever buy anything else ever again. (plus with the King size there are dual controls, so each side can be a different number).
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Aha! The onc is on vacation! They are trying to get me to see someone else, maybe a NP, but we couldn't gel on the schedule today. Having yet another tooth pulled tomorrow, hopefully they can understand what I'm saying afterwards!
Good info on the Sleep Number beds, I've always wondered if they were really good ot not.
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Ok ladies, has anyone heard of Methocarbamol (Robaxin)?? its a muscle relaxer - doc gave it to me today for the headaches...says for the patients he used it on didn't have as much sedative effect as fioricet...
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Jancie- have you tried a feather bed on top of the memory foam? I just put mine in the closet because my bed was TOO soft! they really work!
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We have a memory foam. I like it, DH does not. So that is not working out too well for us. I wish we would have gone with a dual control system.
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Robaxin is an older msucle relaxant that isn't used a lot anymore, unfortunately. It has less of a sedative effect than other muscle relaxants, is less addictive. It should work really well for you!
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I am glad I came across this topic. I have been on Arimidex for a while now and could not figure out why I was so tired all the time and by hip has been hurting so much. Read up on the SE of arimidex and there you go. Not sure what I am going to do about it except bitch, but am thinking a feather topper for my matteress might make me sleep better. Does anyone have the severe fatigue or is it just me.
thanks
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Garnetann - I have dreadful fatigue. Fatigue is my major SE.
I have been on Arimidex for 2.5 years and I am really getting to the point of quitting or changing to something else. Quality of Life is awful at the moment. I started out having bad bone pain - but that subsided after 1 year. The fatigue however has remained a constant feature in my life. Sometimes it is ok but most of the time it is crippling - like now. I have had a week of appaling fatigue. And I have now developed the most alarming headache over the last 2 weeks which won't shift. Analgesics relive it a little but it never really goes away.
Do you think it is possible for SEs to develop and change over the years? I am a very active woman of 46 - well I used to be! I hate the fact that this drug is wiping me out so much and also destroying my bones too.
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garnetann, greenfrog, if you google AstraZeneca, original producer of Arimidex b4 it went genereic, the first SE listed is ASTHENIA. I googled Asthenia, and my body said, YES.
Can't remember who on BCO said it, but defined Asthenia - as Greek, for feeling like Crap.
Think that about covers it. Some days better than others, but generally, feel like a garden slug. ;(
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Thanks for all of the info on beds! I have a feather comforter that I put on top of me - tonight I will try sleeping on top of it instead. Not sure about the heat factor with sleeping on a feather comforter. I have noticed the foam does heat up - there is a new product on the market - a cooling foam that a couple of my friends have tried and swear by it - of course they are going through menopause also.
I bought the 2" memory foam and it really helped us sleep better until the pain went to the sides of my hips and I am a total side sleeper.
I was thinking pillow top mattress! I just need to go to a mattress store and take a nap for a couple of days to find out what works best.
I had never thought of IKEA. We have a huge store here and I have never been in it because I don't like crowds but I guess I need to buckle up and check those mattresses out.
I am sleeping on the futon most nights (after dh falls asleep) because it has the most comfortable european mattress on it. It is a european queen which means longer but not as wide as a queen.
As far as getting rid of the bed we have now? No, I am wanting to put it into the guest room and they can haul off the two twin beds I have in there now instead.
Finding a new bed is going to be my top priority next week as this week is all about getting me and my horse ready for the horse show on Saturday. She was higher than a kite yesterday and that was kind of good because you have to ride her a certain way when she is like this and I totally expect her to be in the same mood at the show.
On another note....I have an appointment with a cardiologist next Friday. I had an appointment with my GP to go over my echocardiagram and it indicates that I might have had a silent heart attack and of course with the two valves not functioning properly he wants me to see a specialist.
At least the doctors noticed I had lost 25 lbs since my last visit!
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Jancie.....good luck on Saturday. Of course your horse knows something's afoot. And of course she is excited.
Hoping too that all goes well with your cardiologist.
Congrats on losing the weight.
As for the bed, remember to treat yourself as well as you treat your horse. You will be just fine. If your husband needs some convincing, have the doctor write an Rx for a new mattress. - Claire
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garnetann - I have been on Arimidex one year now and feel fatigued most of the time. I sleep like a rock but when I wake up in the morning I can barley drag myself out of bed. Once I get going I do better, especially at work since it is non-stop busy. I have never slept so much in my life and always feel tired.
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Fatigue is my worst SE. Lethargic, if I go to take a "nap" - without remembering to set the alarm, I can easily "nap" for 3 or 4 hours. Which, of course, makes it hard to sleep through the night. My usual night sleep is at least 8 or 9 hours.
Have restricted my food/diet about as much as I can, and still be healthy. No whites( flour, sugar, potato, rice, bread) gluten free, dairy free, nothing prepared, no salt = veg, fruit, quinoa, brown rice, supplements galore.
And still - this feeling, of not wanting to move. Not all the time, but enough to know it isn't my "natural" state of being. Feeling as if my get up and go has gone. I KNOW, I KNOW, it's better than another bout with the Beast - but, but, BUTT...I wish I could find my GO!
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SunflowersMA - you have been on this awhile and STILL feel that way??? I am still really struggling with a constant headache, which is making me feel fatigued because of all the meds I'm on to try to counter act other things... I told the ONC I would stay on it to see if the headache goes away... The new med - Robaxin - has taken the edge off, but it is still there... it was the last med available with all my med reactions/allergies... I told my DH today, when it is time for my prescription reflill, I will make my decision - have 2 weeks left.. Praise God I have this option BEAST or ARIMIDEX ... My PCP and ONC thinks this drug is the best for me if I can just get through the first month... I AM TRYING...
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GMA, I think this is one of the SE's tht is "cumulative" - meaning, if it's one of the ones a person gets, it seems to get worse the longer the person is on it ;((((
I know there are trials now going on, Femara, randomized, for women on an AI for at least 4 years - two groups will be : 12 months of the meds ( as usual) second group will be 9 months on/ 3 months off ( no meds for 3 months a year)
I decided NOT to go n the trial, after I realized it would be randomized, which of course it has to be to be effective - but wasn't willing to "sign on" for 5 more years!!!
Eager to hear results - which won't be for years - to see if 9 on/3 off wil be an option. I'm expecting to continue after my 5 years.
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I was so discouraged when mine started, but they only seemed to last about 3 weeks, then tapered off. Hope you get some relief! 
