Arimidex - Coping with the SE's
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Even Super Woman needs to relax and have some fun!
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Lowrider - congratulations on the upcoming retirement! You have a great attitude, and it is time for you to kick back and relax.
Burley, it's great that your SE's are intermittent - definitely makes the course of treatment more bearable. I had a 9 month stretch in my third year of Arimidex with NO joint pain and it was fabulous. It didn't last, however, but I am now 58 days away from the end of treatment and I can handle it for another 58 days. (Not that I'm counting -
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Lowrider
Goodbye to SuperWoman and hello to: I Can Do Whatever I Want to Do Woman!
Prayers for a long, long, long, long, etc. time stable! Yeah, stable!!!!
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Enjoyful
Agreed! I just wish I KNEW what I could do to make the "fatigue" days less - I too find it SO SO SO damn dificult to plan ahead - just wondering if it's going to be one of those "4 hour nap" days....very strange - and try as I have, can't 'figure out any kind of a pattern, or trigger for the fatigue.
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Dang - fatigue is one of the only SEs I have NOT had to deal with on Arimidex! Or at least I don't think I'm that tired. I've always been a napper, even before my dx. I started on Arimidex in February and am trying to figure out - should I stay or should I go? My onc says if the joint pain gets too horrible we can try something else, but from everything I'm reading the something else's can be just as bad or worse. I'd rather slay the dragon I can see.
I'm just trying to power through the joint pain - so far it's in my big toes (especially the left one - how strange) knees, elbows, and thumbs. I'd say anywhere from a 4 to a 7 on the pain scale, pretty much all the time. Oh, and my left bottom rear molar hurts - what's up with that? I did start upping the calcium & D a couple of weeks ago, and that seemed to help a little. I also just got a Glucosamine/MSM/hyaurlic acid supplement yesterday & started that, and I walk a lot & do yoga/stretching as often as I can make myself. Now I'm reading that cutting out gluten & sugar help a lot of people. Yeesh - what's left? I'm a bread freak, I admit. My hands are up. But I'm sorry, sometimes that nice thick slice of homemade bread with some fresh homemade raspberry jam just makes it so much nicer to get out of bed & creak my way into the kitchen in the morning....why work so damn hard to keep living if you can't enjoy life, I ask?
I'm convinced that the regular doses of homemade bread & the occasional peanut M&M binges are what have kept me from getting that depression side effect. I have remained pretty cheerful, I have to say. Pretty happy to be alive.
Anyway, I've been lucky; my night sweats have actually gotten better on Arimidex than they were on Tamoxifen (I took that for about 2 mos prior to my hysterectomy) and I don't seem to have the insatiable appetite I had on Tamoxifen - I've actually lost a few pounds.
Has anyone tried massage? I've been curious about that - I'm also hoping the joint supplements will work for me & will try to report back on that. I think it'll be a week or 2 before I can weigh in on those results. Any other suggestions or experiments - can you buy gluten-free flour? I'm thinking not (wheat flour, anyway). I'd sure hate to break a leg or hip over this - I'm only 51 and am hoping I'll be needing my joints for some time yet.
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There are lots of gluten free products in the market these days. You should be able to find gluten free flour. Concerning massage, I swear by my weekly acupuncture/massage session. It's a real life saver.
I was wondering if anybody has gastric problems with Arimidex. Lately, I have been experiencing indigestion and gastric discomfort. Does anybody know if this is an SE of Arimidex?
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Lowrider - Congrats on your impending retirement! You have a wonderful attitude and a great sense of humor! I laughed out loud when I read your comment about popping up like a pop tart.
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Nandee
Massage is the BEST. I see a woman who was trained by Tracy Walton in Boston MA, to deal especially with women who have had breast cancer - the difference is amazing. I'm a patient at Dana Farber in Boston - and they have acupuncturists, and massage therapists on staff in their Ziskin Complementary Care Center. It's too far a drive for me to go there, so I see a massage therapist who lives near me, and like TokyoSing, I also see an acupuncturist.
I would urge you to try both of those for pain relief. AND, there are wonderful gluten free breads - and good recipes to cook at home, if you're a baker.
If you have a health food store near you - you will find gluten free flour - sold in bulk, or in packages. More expensive in packages. I am so glad I went gluten free - I somtimes have something, maybe a cookie, or slice of cake, and that little bit doesn't seem to make too much of a difference. So I am not as strict as someone with celiac disease has to be, but it really has helped me with eliminating joint pain. Good luck.
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TokyoSing, re: gastritis, I'm a walkiing gas bomb but I attribute that my new, mostly vegetarian diet (beans aren't the only culprits... also cabbage, brussels sprouts, broccoli, asparagus, onions, artichokes, pears, & others). I'm thrilled to note on a Google search that "most people produce about 1 to 4 pints of gas a day and pass gas about 14 times."
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FYI - WalMart now has a Gluten-free aisle - flour, pancake mix, brownie mix, several cookie mixes, pie crust mix, and many others. 5 Chex cereals are gluten free, they have gluten free steel rolled oats, hamburger helper-type meals gluten free, gluten free spaghetti and other noodles, bread and bread mixes and Bisquick has a gluten free baking mix too. I have tried most all of them and the results are not bad - in fact, the pie crust mix that I used for my pumpkin pies at Thanksgiving was the best pie crust I ever made! The pancakes are yummy, the spaghetti is no different and of course, I love Chex. Many other regular grocery stores are now carrying gluten free items - some have them seperated others have them with the like products on the shelves. No need to go to the Natural stores for gluten free anymore.
And boy, can I ever tell the difference when I have had too much regular stuff - my knees just ache but it is so hard to resist those yummy warm buns when out to dinner...have to watch the potatoe bread - pattoo pointed out that many contain wheat flour - and they do - check the labels as long as it only names wheat flour and NOT wheat gluten added too and names potatoe flour in the first few ingredients, its pretty ok - if potatoe or potatoe flour is listed under the 2% contents - no good.
Medical massage is wonderful and I wouldn't know how to act without my acupuncture! The Penny George Health and Healing Center is a part of my treating hospital - all a part of the 'team' for my treatment.
And thanks all for the well wishes - it is time to have a life and I am going to take it!
Low
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Lowrider
So good to hear you are getting benefits from acupuncture. I hope more & more women will try it. Many acupuncturists will also use a "sliding scale" of payments for people with breat cancer.
I wonder if it's only the "Super" Wal-Marts that have that - the one nearest me is a "regular" one - not a very large grocery section. But there must be a "Super" one someplace in the state!
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HI Raincitygirl and others,
Holy batman! I went to the neurologist about my neck pain (3 herniated disks in neck) and she thinks that I have a compressed nerve not only in my neck but maybe in my wirst due to carpel tunnel brought on by the Arimidex. the good news is that she is very familiar with the problem because she works in a major cancer center hospital in boston and has seen many cases where arimidex causes major inflammation. She is sending me to get a nerve conduction study and depending on results, she may recommend either wrist surgery, switching AIs or possibly a steroid shot (my hope is for the shot!). I am difinitely not getting surgery and don't want to switch AIs unless it really is the only option to prevent nerve damage.
I think it is time to also consider the dairy free/gluten free diet to see if that will help. This disease is not for sissies!
I wish you all a side effect free day! best, Beau
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Hi Beau - sorry to hear about the pinched nerve/wrist issue. It's too bad they have to do the nerve conduction instead of just an MRI - I found the nerve study fairly uncomfortable but it is momentary.
As you know I have had two shots, one each in C6 and C7. I am better but not at baseline. I have suddenly discovered that Tylenol Arhtiritis is working better for m e than Advil. Even better, a glass of red wine is very helpful
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Hi ladies,
I found this article , would like to share with you!
Glucosamine and Chondroitin
What are glucosamine and chondroitin?
By Jonathan Cluett, M.D., About.com Guide
Updated November 05, 2010
About.com Health's Disease and Condition content is reviewed by the Medical Review Board
Orthopedics Ads
For over two decades there has been a debate in the treatment of osteoarthritis about the use of the joint supplements glucosamine and chondroitin. Osteoarthritis is a condition that causes problems of wearing out of the normal smooth cartilage surfaces of the joints. Often called wear-and-tear arthritis, osteoarthritis causes joint pain, swelling, and deformity. Osteoarthritis is the most common type of arthritis.
How do glucosamine and chondroitin work?
Glucosamine and chondroitin are two molecules that make up the type of cartilage found within joints. Inside your joints, cartilage undergoes a constant process of breakdown and repair. However, to be properly repaired, the building blocks of cartilage must be present and available. The theory behind using the glucosamine and chondroitin joint supplements is that more of the cartilage building blocks will be available for cartilage repair.- Glucosamine is a precursor to a molecule called a glycosaminoglycan-this molecule is used in the formation and repair of cartilage.
- Chondroitin is the most abundant glycosaminoglycan in cartilage and is responsible for the resiliency of cartilage.
Treatment with these joint supplements is based on the theory that oral consumption of glucosamine and chondroitin may increase the rate of formation of new cartilage by providing more of the necessary building blocks.
Do glucosamine and chondroitin supplements increase cartilage formation?
While it is an interesting theory, oral consumption of glucosamine and chondroitin has not been shown to alter the availability of these cartilage building blocks inside an arthritic joint. It has not been shown that consumption of joint supplements increases the quantity of these cartilage building blocks within any joint.What research has investigated glucosamine and chondroitin?
There have been numerous studies to examine the treatment effects of glucosamine and chondroitin over short periods of time. Most of these studies last only one to two months; however, they have indicated that patients experienced more pain reduction when taking glucosamine and chondroitin than patients receiving a placebo. The improvement experienced by these patients was similar to improvements experienced by patients taking nonsteroidal anti-inflammatory medications (NSAIDs) that have been a mainstay of non-operative arthritis treatment. The difference is that NSAIDs carry an increased risk of side effects including gastrointestinal complaints and bleeding.The joint supplements glucosamine and chondroitin have few side effects, and thus their use would be preferred if the effects of pain reduction were indeed the same. Furthermore, there is an indication that NSAIDs may increase the progression of arthritis, whereas glucosamine and chondroitin may offer a more protective effect to the cartilage surface.
There have been some recent investigations that are focusing on the two primary problems of earlier studies into the supplements glucosamine and chondroitin:
- Studying more patients
- Following these patients for a longer period of time
Because osteoarthritis is a chronic disease that progresses slowly over time, in order to test any treatment, a long period of follow-up is necessary. In one recent study, the effects of chondroitin in 372 patients over a minimum three month period was investigated. This study, which combined the data from other smaller studies, found that patients did have an improvement in their symptoms of pain.
There have also been long-term studies lasting over one year into the effects of glucosamine. These studies also have shown encouraging results. A presentation at the 1999 meeting of the American College of Rheumatology illustrated the findings of a three year long European study that compared the effects of glucosamine versus placebo in about 200 patients. The group of patients taking glucosamine had less pain and better x-ray findings than the group of patients taking the placebo.
Should I be taking glucosamine and chondroitin?
Again, the results of studies investigating glucosamine and chondroitin have been encouraging, but have not passed the test of a well-designed study to be accepted into the primary treatment plan for osteoarthritis. Furthermore, because these are unregulated supplements, a particular brand of glucosamine or chondroitin may or may not be of satisfactory quality.Ultimately, what patients should understand, is that glucosamine and chondroitin have shown encouraging evidence that these supplements can provide help with treating osteoarthritis. However, these studies have ranged from poor to satisfactory in quality, and in order to be accepted as an effective treatment for osteoarthritis, more research must be completed.
What is known is that there are effective treatments for osteoarthritis that every patient should be using before considering these supplements. Specifically, recommendations for weight control, exercise, proper use of medications, and joint protection are known to minimize the progression and improve symptoms of osteoarthritis. These steps must be taken by all arthritis patients for optimal treatment to take place.
Greetins Usha
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Thanks Usha. I can share my personal "study" based only on me.
Around 1990 I had severe hip pain. Dr said eventually I might need total hip replacement but to try glucosamine chondroitin. I did, sporadically without relief, and then decided to be more consistent. I took the supplement every day for about 4 years and was 99.9% pain free to the point that I was able to go off of it. I remained pain free until I started Arimidex in early 2009. We know Arimidex can cause joint issues so after suffering for about a year I started the glucosamine chondroitin again. I have to admit, though, that I'm not consistent with it and it seems my Vit D3 is helping tremendously to the point that I probably will go off the gluco/chond altogether because I am now pain free probably 90% of the time.
2 friends I had previously recommended gluco/chond to did not fare as well; both had to stop due to water retention which I believe can be a side-effect. I wholeheartedly agree with the last paragraph in your post that exercise and weight control are the main keys to coping with our joints. Thanks for posting the article.
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Hi, patoo,
I' m so glad you are pain free! I am intending to start with gluco/chond too.
Greetings
Usha
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Hi sloucha,
thanks for info on glucosamine, etc. I have read that it can be hard on the liver (not sure if this is right), but I will as my BS next week when I see her for my check-up.
I had elevated liver enzymes during chemo so I have been cautious about adding anything else.
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I'm with Patoo!!!!
years ago, I could hardly walk down stairs because of the pain, PAIN #10 level PAIN, in my knees - which sounded like crunching leaves when I walked.
Was told by Naturpath to start the combination, after 4 months, I could stop the condhroitin, and continue, to this day, to take glucosamine. Knees are still good. Arimidex has NOT been friendly, but manageable with acupuncture, massage, a few heating pads, generic "Ben Gay" - and not as much walking as I should do. If you're ever in Western MA, and smell peppermint nearby, it's probably me
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I felt so much better after about 6 weeks of taking g/c I didn't even think of se's.
Here's what Mayo Clinic says: http://www.mayoclinic.com/health/glucosamine/NS_patient-glucosamine/DSECTION=safety
Important for anyone who has alleregices to SEA FOOD. Please read if you do.
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Happy retirement, Lowrider! You have a wonderful attitude.
Just read the list of ingredients in Smart Water: vapor distilled water, calcium chloride, magnesium chloride, potassium (electrolyte sources), electrolytes for taste. Some years ago when I played a lot of tennis in hot summer weather, I would buy little packets of powder that contained electrolytes at a health food store. I would empty the packets in water and it helped with preventing muscle cramps. My problem is that I perspire so much that my tennis shoes would get wet from the rivulets streaming down my legs. The night before tennis games I would eat bananas or a baked potato for the potassium.
Quinine is great for muscle cramping and it is available in Canada.
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I just heard about this site, I too am on arimidex. My major side effect is exhaustion, complete exhaustion. I work so can't take a nap. I live for the weekends, although they are nothing like they were before all of this started. I read about co10, a vitamin, I think, and took it today. Will let everyone know if it makes a difference.
Judy0 -
Judy, my husband has started takng COQ10 at his cardiologist's recommendation. DH had started having muscle pain as a SE of taking Crestor. Weird because he had been taking Crestor for several years. He's on a different statin and taking the COQ10, 200 mg. Maybe the supplement would help with joint pain SE from Arimidex.
Do you have time in your schedule for exercise? If so try taking a walk and see if that gives you more energy. I don't have exhaustion, but I do have a low level of fatigue. I try to walk 3 miles several times a week and I also play golf, but I rent a cart. Just a few years ago, I would walk with a push cart. Good luck. I hope you find something to counteract that extreme exhaustion. Life isn't fun when you're tired.
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Jusy, Carolehaist,
I too am experiencing the exhaustio, used to call it fatigue, but now in my 4th year of taking Arimidex, I'm beginning to think that the SE's might be "cumulative" - especially what the drug company who makes the "little white pill" lists as the MAIN SE - "Asthenia"-think it was Enjoyful who defined it as Greek for "feeling like crap."
Anybody else notice a cumulative SE on Arimidex ot any of the other AI's they're taking???
Nothing else has changed, exercise as I did, take the same suplements - but this damn feeling of being too tired to do anything but nap - is getting worse....
Still grateful to HAVE this medication - but the tiredness, some muscle weakness in legs is really getting to me.....
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Hi Judy,
Sorry to hear that you are tired so much of the time. How are you sleeping? I found that the Arimidex gave me insomnia so I finally threw in the towel and started to take 1/2 a sleeping pill,
which helped a lot. I have some other issues like arthritis and carpel tunnel that I am trying to work through. I went to an acupuncturist yesterday that seemed to help with some of my aches and pains.
Happy Mother's Day to all the mothers out there! Best, Beau
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Can't believe your name is LANE. Mine too, never found that name among women. TOO bad we both have BC.
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Emell, have you had your thyroid checked?
I have Hashimotos and this sure sounds like it to me. I had all of those symptoms before anything to do with BC. Arimidex does none of this to me, except for the sleep disturbance and the muscle stuff.
I have heard of the exhaustion but I mention the thyroid as I know now that chemo, rads, bc txmtns, arimidex itself can throw it out of whack.
Mention it pe r haps to your GP? Have you gained or lost weight? It sounds an awful lot like the way I used to feel.
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Ok I'm officially at 2 months on Arimidex, and I feel like an old lady when I get out of bed in the morning. Or even when I get out of the recliner after sitting for a bit. I stumble around until my knees and ankles start to cooperate with me. And my left hand is in a permanent cramp. And I can't sleep at night. I maybe get 5 hours of sleep a night, unless someone lets me sleep in.
I'm frustrated. I need to talk to my doc(s) about supplements I can take to help both the aches and the sleep problems.
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That 'old lady' feeling went away for me just after 3 months or so. Going without gluten helped me the most - and dummy me just went through a few days of dinners and brunch at friends for Mothers Day and man, the gluten I consumed - my knees are really hating me today! I wiggled around all night last night with the joint pain I thought I was going insane!
Of course, once again I was a dummy - I have plenty of pain meds and finally got up and took one. I will not keep them in my bedroom - none of my meds - I make myself walk to the kitchen and turn on the light so I see exactly what I am doing and be a bit more awake. First thing in the am one day, I accidently ate a weeks worth when counting out my 'go pills' - I swiped the wrong pile off the counter and didn't realize it until I starting to nod out - I ran for the Ipacac (yes, it still works no matter how old it is...was from when my son was little - now 22) so I am sooo careful about my meds and even the supplements.
Needless to say, gluten and me aren't friends anymore...LOL
burley...good idea to talk with the doc - an anti anxiety helped me because I would work myself into a tizzy and then couldn't sleep so once I got on a even keel, I sleep better - except when I do dumb stuff like eat cream cheese layed buttermilk pancakes with strawberries and whip cream and then yummy comfort food - chicken and dumpling and hot rolls - and lets not forget the cookies and cakes and well, it was gluten overload after not having it but in small quantities for over a year - still having a few issues today yet - easing as the day goes by.
Wow, think if I add the chroldin and glucosamin - I may be dancing the jig...ok, well, may a nice slow dance...
Hugs all
Low
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Burley, I have EXACTLY the same symptoms as you, down to the club left hand. I joke to my husband about taking my "old lady pill" but he doesn't think it's very funny. I got a prescription for Ambien a couple of months ago, which works great, for a couple of months. Now I'm back to waking up on and off all night with hot flashes, and then permanently around 5:30, which is rotten. I'm getting so tired again. I had actually started to lose weight (about 10 lbs) and I attributed it to sleeping better. Studies show a correlation between insomnia and weight gain. I see the doc in June and I'm going see if I can switch to something else. It's really important for me to sleep since I work in science research all day. I thought this stiffness would go away over time but it is about the same (5 months now). I've cut down on wheat products, but it is really difficult for me!
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I've been on it going on 17 months now. Same side effects except the club hand. I feel like an old lady anytime i've been still and have to move. Get up out of a chair, get out of my car, get up from my desk.......I'm starting to get use to it but its very frustrating. I have finally licked the sleeping problem with meletonin. I get it at the drug store and take 6mil every night about 2 hours before bed. I find it makes me drowsey so I can fall asleep and I seem to stay asleep. If I don't take it I wake up several times a night.
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