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Arimidex - Coping with the SE's

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  • one-L
    one-L Member Posts: 653
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    Thanks so much for everyone's advice.  I have wrist splints and will see how that works.  I have had problems in the past so I do have one for each wrist.  I take my gabapentin faithfully every day.  If I wait longer than 8 hours between pills, I have to take a hydrocodone to stop the pain in my arm.

    I called my Onc today and she wants to talk to me before switching.  I trust my GYN, I have gone to him for 11 years, but I just will not change a med that he didn't prescribe.  I have to trust my Onc also.  But he did say someone needed to manage my meds, so I will not have any interactions between the meds.  That I go along with.

     I will also talk to her about a physical therapist.  It seems that I am not alone in this journey and it is good to find a group with so much knowledge.

    I have had my Vit D checked and it was in the normal range.  However, I do take 5,000 ui a day, plus the extra in the calcium.  I have also added fish oil to my regiment of supplements, along with Apple Cider Vinegar Pills for indigestion.  He wants me to go off my Nexium and I already suffer from acid reflux and the gabapentin also causes acid reflux, I will try the Vinegar Pills and hope they work.

     It just seems that if it isn't one thing, then it is another.  I don't think this will ever end.

    Hope everyone has a great weekend.

    Juannelle

  • MTG
    MTG Member Posts: 337
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    Jo - Thanks for the input.

    I find it odd that at 48, I'm giving my 84 yr old Mother advice on how to deal with joint pain and related vitamins, but then again, it's nice to see that my time on these threads helps for more than just BC stuff. I really do appreciate all the things I learn here !

  • bonniewe
    bonniewe Member Posts: 1
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    Juannelle, could you tell me why your onc wants you to go off of Nexium?   I take it as well because so many meds/foods cause havoc with my system.   thank you!  

  • one-L
    one-L Member Posts: 653
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    bonniewe, he  said it keeps you from absorbing some of the meds.  I just looked at him when he said it.  I take my Nexium in the am and if I forget, then by 2:00 I have terrible indigestion.  I have a hernia and he once told me I would never go off of the Nexium, because OTC products just do not work for me.  BTW it wasn't the Onc that wants me to go off, it is my GYN.  He pretty much manages all the meds I take.  Since I always see him once a year, he generally gives me my prescriptions, until BC anyway.  He keeps up with all my wellness stuff.

    I think I will do some research on the Nexium to see what I can find out.

    I did sleep in the wrist splints last night and did not wake up once with pain in my hands.  Such a simple solution.  Thanks for the advice.

    Happy Saturday to everyone.

    Juannelle

  • rrartist
    rrartist Member Posts: 3
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    I really don't think that people mean to be vicious or mean - spirited. Dealing with cancer is very scary and taking this powerful drug provides a constant reminder of our condition. 

    I find the ways that women are dealing with the side effects to be very helpful but really wish that more facts were available. Drug companies reassurances have not always been reliable. But if this is the best we have right now I'll take it. 

  • one-L
    one-L Member Posts: 653
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    Dealing with everything about cancer is scary.  It is hard to live just in the present, we all wonder what our futures will hold.  We all certainly want a future.

    In reality, they can't tell us why we got cancer or why anyone gets it.  We are at the mercy of the doctors and drug companies to give us the best information possible.  Then we have to trust them.  Especially when big money is at stake.

    The best thing that I have since my cancer is that I have found this site with all the wonderful women willing to help the others get through all of this.  I could not have made it without the encouragement that I receive from this site.  You are all my NBFFs and have made my journey much easier.  I am sorry everyone is here, but I appreciate all of you.

  • one-L
    one-L Member Posts: 653
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    sunflowers, the normal for my Vit D was 35.  I have read recently where some doctors are wanting it to be as high as 100 to be in the normal range.  So that is why I am taking 5000 ui a day.  I will have a complete blood workup next month for my Onc and I will get a report.  You are correct when you say that BC is a very complicated disease.  We have to do our homework and keep on top of everything.  I was not use to having to do that.

  • Grayt
    Grayt Member Posts: 32
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    My onc wanted my Vit D at a minimum of 40; mine was 26 even after taking 2,000iu/day since November.  For the last couple of months, I took 6,000iu/day plus that in my calcium.  At long last, it's now 60; lucky me; that means I can begin Arimidex Monday - - - or as soon as I ditch the nightshades and get my arthritis pain under control.  I hate to go into it already hurting this much.  Fond goodbye to tomatoes, peppers, eggplant, potatoes and cabbage.  Good nutrition getting tricky!

    - Brenda Cry

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Brenda, I may misunderstand your post, but cabbage isn't in the nightshade family, it's in the same family as broccoli and cauliflower... you may be eliminating it for other reasons but I wanted to mention the difference in family, just in case!

  • aussieched
    aussieched Member Posts: 87
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    Hi NatureGrrl,

    Yes, you are right about the cabbage, unless Grayt has a problem digesting it or it is causing her problems, I have been led to believe that cabbage and everything from that particular plant family, are very good for us girls with breast cancer.  

    Grayt and One-L

    It would appear that all doctors seem to have a different measure as to what is the optimum Vitamin D level.  Mine was 21 when diagnosed, my GP was happy when I got it to 60, however my Onc said he wanted me to get it up to 100 before he would be happy. (Australia) My last blood test showed it at 116, so I can now finally relax a little.

  • jessamine
    jessamine Member Posts: 123
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    Is there a nightshade/arimidex connection I'm missing here? Or is related to the arthritis?

  • patoo
    patoo Member Posts: 5,243
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    BTW, when I got up this morning my left hand (non-BC side) felt stiff so I stretched it and, voila, that ring finger popped.  Hope not developing trigger finger there.

    Are we having fun yet?????

  • rreynolds1
    rreynolds1 Member Posts: 62
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    Hi All,

    I have been taking Arimidex since Aug./09 without terrible side effects.  I was paying 340 a month because I have a high deductable plan.  I just started taking the generic which is 163 a month.  Now I have much stronger side effects.  Lots of joint pain.  Anyone else tried the generic?  Very odd.  If it is the same, why would I be matabolizing it differently.

    Roseann

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    jessamine, I think it's arthritis Brenda's talking about, but she'll have to answer for sure.  I think she's aiming at anti-inflammatory foods (which, of course, can include us on A).  There are some mixed ideas about what an anti-inflammatory diet includes; I haven't seen nightshades included in general and I can't find any research to support that idea (in fact, peppers are on my list of "good" foods) but if it works for someone, that's certainly what they should do.  People respond so differently to foods.

    Roseann, the active ingredient is the same, but inactive ingredients are different. I don't think anyone can say for sure why you're having pain now but I know for some women, the pain can show up any time.  It may be coincidence that your pain started now or it may be a difference in something else, like the meds, although few people react to inactive ingredients.  If it doesn't go away, worth talking with your pharmacist/oncologist.   I'm on the generic.  I had a flare-up a couple of weeks ago but it was very short and I'm better now than I was a month ago.  Go figure.

  • pj12
    pj12 Member Posts: 18,108
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    Hi rreynolds1,

    Sorry you are having problems. I started A in July 2009. My SEs got worse after about 6 months. I switched to a generic a month and a half ago... (Roxane)... no difference.

    There is a big variation in the price of the generics. Lots of women have found Costco to be the cheapest (like $30.00 for 90 pills) and you do not have to be a member and that is without any insurance adjustment to the price. You might want to shop around.

    Good luck.

    pam 

  • kathylev
    kathylev Member Posts: 56
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    Thank you, Sunflowers and all the other ladies that suggested I use wrist supports at night to ease the numbing in my hands.  Last night I wore Futuro wrist stabilizers on both hands and woke this morning with NO numbness in either hand for the first time in six weeks.  I'm not sure how or why it worked, but I'm so happy it did.   Thanks again!

    Kathy

  • Rocket
    Rocket Member Posts: 910
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    Hi Everyone,

    I had my hysterectomy/oophorectomy on Wednesday the 11th, and yesterday I went Christmas shopping.  I feel fine other than some post-op swelling, a little soreness, and fatigue.  Overall however it was by far the easiest surgery I have ever experienced. 

    I do have a question about Arimidex.  I have recently begun having numbness and tingling in both hands.  I had that problem when I had chemo, but then it went away.  Now it's back.  I only had three of four cycles of chemo which was discontinued due to a heart condition.  The prickly, numb feeling has returned to my hands and fingers three months after starting Arimidex.  It is intermittent and I notice it more when I'm doing something with my hands in an elevated position like talking on the phone, tweezing my eyebrows, etc.  Has anyone experienced that problem since taking Arimidex?

  • chrissyb
    chrissyb Member Posts: 11,438
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    Hi Rocket, I also had and still have on occasion the numbness and tingling in my hands particularly when I am talking on the phone or when I keep my hands in the same position for some time.  I've been on Arimidex for about 15 months now and I find that SE's seem to come and go. Nothing hangs around too long other than being tired and achy.

    Love n hugs to you. chrissyb

  • Rocket
    Rocket Member Posts: 910
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    Thanks for the encouragement Chrissy!  I hope that the numbness is infrequent.  It can be really annoying.

  • one-L
    one-L Member Posts: 653
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    kathylve, isn't it amazing that something so simple can make so much difference.  Last night was the second night I slept with the wrist splints.  I just can't believe what a difference it does make.

    I am very lucky, my copay for my Arimidex is $50.00 for three months.  I have UH and I know other women complain about it, but I have had no problems.  Mine is a company plan and that may make the difference.

    My DH and went riding on the motorcycle today and stayed out for about 1 hr.  Could barely drag my big butt off.  I did manage though, we have been trying to ride more and let me stay on longer, so we can take a short trip, about 150 miles, so we  will see.

    I am glad to hear that the SEs come and go.  Maybe that will make them tolerable.

    Hope everyone  is having a great weekend.

    Juannelle

  • Char2010
    Char2010 Member Posts: 362
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    Roseann - I will be starting Arimidex later this month and started to look into generics.  Spoke with a pharmacist friend and she looked into which generics have the same makeup as Arimidex - one is TEVA.  She told me that they have had no problems with TEVA generics (Walgreens).  Also told me that you can ask a pharmacy to order a specific generic for you - so I went to CVS and they carry a different manufacturer but will get me TEVA (24 hour wait).  so maybe that is something for you to look into>

  • Grayt
    Grayt Member Posts: 32
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    NatureGrrl - Thank you for setting me straight on the cabbage!  I've looked & looked and can't seem to find any reference to it in the nightshade lists.  Who knows what list it escaped from or what faulty info I'd found.   I certainly am happy to keep in in my diet, especially as a cancer patient.

    The nightshade problrm I have is with arthritis.  Anticipating joint pain from Arimidex, I'm trying to start as pain-free as possible.

    I believe my prescription is for a generic and I'll pick it up tomorrow at Publix Pharmacy.

    Best - Brenda

  • NatureGrrl
    NatureGrrl Member Posts: 681
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    Brenda, good luck, and I'm glad you were able to put cabbage back on.  As a botanist I can assure you it's not in the nightshade family. 

    Many women don't have A SE's so you can assume you'll be one of them until you learn otherwise... and if you do have trouble, this thread should be able to supply lots of support!

  • MTG
    MTG Member Posts: 337
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    Roseann - Having switched from Tamoxifen, I saw some ladies on that thread have stronger SE's from some generics than others....whether it's due to the fillers (which can and do vary) or the the minute variations in the active ingredient (I believe generics have to be 95% similar rather than 100%; read it somewhere on this site but haven't independently varified it), I dont know. However, if the new SE's dont ease up and your onc doesn't have any clear answers, an easy next step may simply be to try a generic manufactured by one of the other companies. It can't hurt and it just may help.

    As for nightshades, apparently they're known inflammatories for many people. See: http://search.aol.com/aol/search?query=nightshade+inflammatory&s_it=keyword_rollover. However, like Naturegrrl, peppers are on my good food list, as are tomatoes and tabasco. Keep in mind there are benefits others than anti-inflammatory/inflammatory properties. Tomatoes and peppers have lycopene which is excellent for the skin; I ate a lot during radiation since lycopene ostensibly has a protective effect from the sun but from the insde out and thus potentially helps with radiation. Tabasco and hot peppers increase one's metabolism and thus help with the battle of the bulge. So it's a balance. You may want to try eliminating nightshades for a while, see if things improve and then gradually reintroduce them.

  • jacksnana
    jacksnana Member Posts: 28
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    Have any of you had mouth sores that you think might be from the Arimidex?  I finished chemo in April (TCH) and never had this problem.  I have been on Arimidex almost three months.  Three weeks ago I refilled my rx and got the generic (mfg. Zydus).  The mouthsores have been bothering me for about a week.  I'm still on Herceptin but have been all along so I don't think that could be the culprit.  Just wondered if anybody else had this issue...

  • carolehalston
    carolehalston Member Posts: 7,880
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    Could someone explain the Ignore button?

    I wasn't aware that gluten causes/can cause joint pain.  I don't have joint "pain" but my joints are stiff when I get up after sitting for a while. 

    So far I notice no difference between taking the expensive little white pill and the generic.  I'm so glad the med is available in generic now because many women just couldn't afford to buy it. 

    Good health to all of us!

  • weety
    weety Member Posts: 371
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    THanks everyone for the info and links about aredia.  I will look more closely at them when I have a chance, but from just glancing, it still looks like it is used for metastatic breast cancer and NOT for osteopenia.  I wonder why this is what my onc seems to be recommending.

  • jessamine
    jessamine Member Posts: 123
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    To ignore a member, click on their name- when you're at their profile page there is an option for "ignore this member". If you click it, you can't see any of their posts, only that they made one.

  • nativemainer
    nativemainer Member Posts: 7,825
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    If I can jump in here, one of the problems with the proton pump inhibitors (Nexium, Protonix, Prilosec, Pervacid) is that they contribute to bone loss over the long term.  I learned this when I had my bone density scan after 2 years of arimidex.  The form listed 2 high risk drugs--AI (arimidex) and PPI (prilosec in my case).  Yes, the PPIs can decrease drug absorption, but if that is a real problem (and usually it isn't) it can be managed by separating the medications or adjusting the dose.  I take the PPI and most of my meds in the morning, including arimidex, and take a multivitamin with iron and extra Vit C and D3 at bedtime.  My TSH and estrogen levels show the arimidex is active and doing its job.  If there's a real question about absorption of arimidex, ask for hormone levels the next time you have blood work done, that should tell you where you are and if you have to make adjustments. 

    I take gabapentin (Neurontin) to control the hot flashes at night, which is an added benefit to using it for nerve pain (like carpal tunnel syndrome).  I forgot to take my bedtime meds night before last, and woke up several times in a sweat, so I know it works.  

    (edited to add neurontin comment)

  • Julia257
    Julia257 Member Posts: 203
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    NativeMainer, thank you for the reminder to have hormones checked.  My 3 mos appt with onc apres starting A is next week and I'll request that, also a Vit D level ...last checked it was 16, now taking 5k/day.  I'm happy to say the flare up in the old OA hips has cooled down.  I have not re-started my multitude of OA supplements (stopped ~Jan), have not changed my walk in the morning ...after a cup'a Jo, banana w'pnut butter (sorry, can't resist), and A I do hill and dale at dawn for 1 hour.  I'm convinced Shape-Ups is superior to anything else and is helping me, I'm sure of it.  No other walking shoe, even with a thicker sole conforms and enhances the rolling motion of the foot.  It's simple and brilliant.  How many of us are saying "why didn't I think of that!"  Again thank you as always for every life-enhancing/saving nugget of information, I appreciate it so much.  My best wishes to you all.  Julia