Arimidex - Coping with the SE's
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Barb--your welcome. I find claritin helpful, but I can't take it steadily because I end up feeling so tired I can't get out of my own way! Right now I'm experimenting with 3 days a week of claritin. Of course, if I exercised more regularly I would probably feel better, too.
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Stopped taking anastrozole while on vacation for 10 days, still had joint pain, fatigue and hot flashes. Now I'm thinking it's the oopherectomy that's causing the discomfort and not the medication. Back on the AI train...
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Anyone getting heart palpitations from arimidex? I've had issues in the past with this, but what I'm getting now is debilitating. Skips a beat about every 10th beat. PCP and I changed the way I'm taking my thyroid but it hasn't helped. All I can say is.....Yuck!
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MostlySew,
Get your potassium levels checked right away. (simple blood test). If you drink a lot of bottled water you may be low on potassium. I have been on prescription strength potassium for 2 years because of heart palpitations. What is really scary is that the symptoms for low potassium are the same as the symptoms of potassium that is too high. Both can cause real problems so don't think you can just pop some health food store pills.
If it is low potassium, you may want to ask your doctor If he thinks a prescription of 8MEQ three times a day will help you. This is what I take.
In the meantime drink a couple of bottles of V-8 and see if it helps.
Let us know what happens.
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The V8 is a good idea and grab some bananas if you are low. Nothing better than we can only go by what a member says to determine if something is a violation of our community rules,POWERADE ZERO for that either. I swear it kept my husband alive whole he was on chemo - certainly kept him from dehydration without the high sugars in Gatorade. kEEPS ELECTROLYTES IN BALANCE.dO ASK YOUR dr, (sorry caps)
BUT...most important, do get your level CHECKED!
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Hi Layla,
I just wanted to add to the list the possibiliy that you might have a food allergy or rosacea. I have the latter and my immune system now "misreads" all sorts of things like citrus, strong coffee, lotions, lipsticks. Even the sun. I often have inflamed lips and red face (not tongue though, which sounds more worrisome and more like a straight up allergy. )
In any event, the OTC 1% hydrocortizone OINTMENT (not cream, but ointment which has a vaseline base) works well for me on my lips. I had to cut out pretty much everything and then re-introduce foods, products, one-by-one to see what set things off most. You might want to see an allergy specialist since it sounds debilitating. Good luck!!!
best Beau
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Good evening sisters!
My SE's have not been too bad, but most annoying. I have pain in my wrists and hands, but I knit and pound a keyboard all day, so I expect that, hips hurt too but doable. My biggest problems are stuff that dont seem to be mentioned much, so I wonder if maybe I am crazy....
I was given a great talent for sleeping, but that is gone, I cant sleep a whole night and always seem to be so tired. I am lucky enough to get a 1/2 hour nap mid day at work, but it is not a big help when by the end of the day I feel like I can not walk the 3 blocks to my car to get home. Then I have totally lost my appetite. My MO asked me if it was really a problem??? Yes I am overweight but I have lost 35 lbs since surgery in March. 20 since on AI. My DH is worried because he knows that I did have an eating problem when I was in my 20's and it took a lot of years to get past that. My MO did not know me when I could not keep my weight up.... I know this is not an eating disorder, but I am not hungry. I have been sending my DH grocery shopping cuz I cant seem to bring home food to make meals..... He is hungry. But most troubling to me is my hair is thinning and falling out by the handful. My MO said she doubted it was caused by AI but not what I find on the internet. I know this is minor because it could be worse and I could have lost all my hair due to chemo, but really considering how much hair I have lost in just 2 months, will I have any left after 5 years???? The foggy brain and memory problems is affec ting my work and my MO assures me it is not from anastrozole. I make ,mistakes and miss stuff that I know I would not have missed before. I cant remember anything anymore.
I guess I am just whining....but really I hate this cancer stuff and I hate more that my MO does not take my problem seriously and my PCP says just give it time.
Sorry for bitching...
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Hi Niki
You're not whining OR bitching! You are expressing valid concerns over a loss. I dont blame you. I know it's difficult when we think of others who have gone through SO much more, but then I remind myself, what I am going through is valid too, and furthermore, none of us here know what is next for us - which is the scariest part of this whole ordeal.I hope things get better for you!
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Notself and Purple.
Thanks for the tip about potassium. I did just have blood work done, but that wasn't included. Two,years ago it was fine, but that was before all this cancer stuff! I think I'll pick up some of both tomorrow and see if it helps. I see the doc next week and will check. Thanks again for the tip
GmaNiki,
Sorry you're having such a time on arimidex. Have you thought about changing MO's? Even my PCP knew that your brain needs estrogen to function at top level. Seems the rest of what you report are side effects also. I will say the SE's did get a bit better over time for me, but your doc doesn't seem to want to acknowledge the problems. There are other drugs in the same class (AI) also which might act differently for you.0 -
Lee7, you are so right. After an extensive interview the derm doc told me to stop the Biotene toothpaste. Oddly enough,that helped so much. Now everything cleared up immediately but still sensitive to salt and the stay on cover girl lipstick with the second tube of clear gel that goes over it to set it. I can't seem to find any lipstick that doesnt irritate my lips.
the menopause is causing some I think, no hormones and flashing a lot. My skin,hair,dry eyes and lips...I feel like a 57 chevy that just ran outta oil! Without estrogen or testosterone or prog; the sex life is at a stall. The fiance usually drinks a 6 pack and falls
asleep watching Wormhole in front of the TV. oh what an exciting couple we are..lol!
Has anyone done a zipline? It looks like fun and I was thinking it might be the activity we need to spice things up. I was hoping to squeeze the event in before exchange on Aug 30th. However, its a little pricy and reservations are needed. One here goes over a gator exhibit so if something goes wrong i will be literally eaten alive..
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Layla, first of all, do the zipline. Even if it is a little pricy, splurge a little and do it. Some of my family members have done it and love it, and I plan to do it as well.
Second, I wanted to ask what is in Biotene that caused problems for you?
Lastly, I started using Burt's Bees products for my lips. Their products are all natural, so maybe they wouldn't irritate your lips? I use the 'lip shimmer' which looks like chap stick. It adds a little color to my lips. Then I go over it with Burt's Bee's 'Super Shiny Lip Gloss'. Sometimes I just use the lip gloss. I absolutely love the products, they are my favorite lip sticks I've ever used...easily purchased at Walmart.
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Layla & Divine....When you mentioned zipline, I said to myself, nooooo. I know its probably a really, really, rare case that this could happen but did you remember the recent news story about the college student in Georgia who cut her leg on a zipline and then contracted a deadly bacteria from the water? She survived but lost both her hands, a foot and I think a leg to the bacteria. I don't know... I'd be scared going in any water that gators are near.
I love Burt's Bees products!
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GmaNiki-I'm experiencing everything you mentioned except weight loss-in fact I've gained a few pounds...and I have some pretty nasty joint pain. I'm just not certain if it's from the anastrozole or being thrown into menopause after my oopherectomy. Good luck, perhaps our se's will disappear after a while. I've been on AI since April 1, just a month longer than you. If you're MO doesn't take your se's seriously, you may want to seek out a second opinion.
Burt's rocks! I'm going to check out the shiny lip gloss.
I'd zipline if I could-currently have two frozen shoulders though, so it's no go. If you go-steer clear of the gators!
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layla2525: do the zipline! Everybody I know who've done it have raved about it, and I can't wait to do it too. Life is short! My only regrets are the things I *didn't* try...go for it!
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sebm9: I completely agree!!!!!!!
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I know...I am just a scaredy cat. I can worry about silly things some times. It has made me pass on some things I regret not doing now. I wish I were more adventurous.
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Nikki--hiar thinning IS a side effect of the AI's. I had it for about 3 months when I started arimidex, then it stopped. It does flair up when I'm under a lot of stress, but again it stops after a few weeks. I have to say that I did have some hair thinning under extreme stress before bc, but not as much as I have on the arimidex. And you are not whining, you are reacting to side effects that are decreasing your quality of life. That is worth all the ranting, raving, whining and whatever else it takes to get it tended to. I also second the advice to get a different MO--with your history of an eating disorder any uncontrolled weight loss needs to be paid attention to, so it doesn't trigger a relapse. Again I second what has already been advised--try a different AI. Many women have lesser side effects on a different one. Not sure why, but it does happen quite often.
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Native...apparently by changing meds, the SEs are different because of the fillers, not the actual drug itself.
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For anybody experiencing hair thinning, I learned a few things while doing chemo and using Penguin Cold Caps (to keep your hair during chemo). Your liver function, as well as iron intake and level, are very key to healthy hair and preventing hair loss, so you might want to check with your doctor about using an iron supplement (but check -- it is possible to overload on iron; in fact, hair loss is also a symptom of too much iron). Also, any kind of cold will stimulate hair growth as well as prevent it from falling out.
During PCCs, I followed the protocol which accompanies PCC use. In addition to using the caps during the infusion, the hair care protocol includes washing hair only in cold water, using shampoos free of certain chemicals, detoxing by drinking tons of water and exercising as much as you are able. The iron supplements are used at the end of chemo if hair continues to shed -- but having a diet rich in iron is even better. Carnivores tend to do a little better than vegetarians, when using PCCs (but there are lots of variables). Milk Thistle can greatly assist your liver in staying healthy, but it can also mimic estrogen, so is probably not a good idea for women taking AIs unless you are only mildly estrogen positive.
There is a type of cold cap called Elasto-Gel, which I do *not* recommend for hair loss during chemo, but which can be helpful to anyone who has thinning hair. You pop it in the freezer at home, and wear it for an hour or two -- more if you like -- to help prevent hair loss but also to stimulate new hair growth.
Hope this helps; I felt that my hair was shedding more heavily than usual when I started taking anastrozol, so added iron supplements and it stopped almost immediately. I also swim every day, so my head is in cold water for at least an hour each day.
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Btw, I forgot to take Claritin for the last couple of days because I have houseguests and because I didn't have allergies; man, did the body aches come roaring back! Popped that Claritin and within a bit the edge was off the pain, and today I was back to normal.
Susan
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sebM9...thanks for the heads up on the Claritin...I have been taking one a day for the last 5 months. My MO laughed at me and said it might have worked for Neulasta but wouldn't work for Arimidex. I have had bone and join pain so continued taking it but since it has been a bit better lately, I was going to stop the Claritin and see what happens. Now I will take it another month after your experience, then decide.
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Hi Ladies,
Ive been doing Arim since beginning of this year. Was on Tamox 2yrs prior to that. I was OK for the 1st couple of months but am experiencing pretty rugged joint pain at times. About a month ago Doc put me on Nortript. to ease both the joint pain and my burning feet from Peripheral Neuropathy which is a separate issue from BC. It worked some, but I immediately got a worsening sore throat out of it so stopped the Nortrip for about a week and started again about a week ago. This time no sore throat. Go figure!
Arimidex has definitely cranked up my neuropathy and now IM finding my nails are really splitting easily and sometimes into the meaty part of the fingernail which I immediately protect with plaster so it doent tear. My skin is also dry, especially bits of skin poking up around my nails (grrrrr) and Ive just (hopefully) warded off a potential dice with cellulitis from an inflamed thumb with my antibiot cream.
What Vitamen and/or mineralis are indicative of extremely brittle nails? I take 50,000IUs VitD3 (Cal De Forte) on script every 2 weeks.Dont know if you guys in the US get this high dosage in D3 but we do here in NZ, typically used in situations like in homes for the aged where they dont get in the sun so much. Our latitude is also quite low especially in midwinter.
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Hi, ladies - another experience with Claritin. I was having really bad joint pain with my AI, and wasn't sure if claritin helped. I was taking AI at night and claritin in the morning. So, a few days ago I started taking them together in the evening and I've had three days with much less pain! I sure hope it lasts. It's frustrating - we just have to keep trying different things and hope that we find something that works for us. Best of luck all of you!
Barb
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barby...I take mine together as well but in the morning. I know that one SE is insomnia so I wondered if taking them in the morning would help as it has all day to work. So far, so good. No insomnia for me. I am into my 6th month on Arimidex now. It's been a week with no joint/bone pain too but the test will be this weekend when I go shopping. That is when I REALLY feel the pain cause it's the most walking that I do in a week.
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Does anyone know the mechanism that Claritin creates to ease the bone/joint pain?
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I guess it is something in the antihistamine...you aren't supposed to take the one with the decongestant in it so it doesn't leave much else.
I am so grateful it got me thru chemo and neulasta I don't question it, I just take it and cross my fingers!!!!
<----Reminder to self...YA NEED MORE CLARITIN from WalMart.
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Antihistamine blocks part of the inflammation process. It helps Neulasta pain becuase the pain is from the ramping up of the immune system in the bone marrow, triggering white blood cell production. Medicine is not really sure why/how the AIs cause bone pain, but the fact that claritin works is making some researchers look into the effect of the AIs on the immune system. Bottom line, medicine doesn't know how AI causes bone pain or why claritin helps.
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Jeez...I hope we don't all become immune to the antihistimine (5 years is a long time to take it) so that it doesn't work anymore or causes other problems. If it's not one thing, it's another!
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I had to switch my Arimidex to evenings because it made me too sleepy to function. I take the Claritin in the morning. I'm taking so many pills that I switched all my OTC meds to noon. I had visions of pill battles in my tummy and blood stream.
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Musical- vitamin A and B2 are good for nails as is vitamin D. In the states the Rx strength vitamin D is called Drisdol and is D2 50,000 iu to be taken weekly or monthly depending on current vit d level. BTW- where do you live?
Ladies- why Claritin and not another antihistamine such as Zyrtec? Don't expect you to know, just wondering out loud.
I have been taking anastrozole about 2 months and take in the evening at dinner time, 5 hours before bedtime. No effect on sleep.0 -
Claritin is the brand name for loratadine. I actually use the generic OTC loratadine, but say Claritin. Bad habit, I suppose. If I recall correctly Zyrtec is another drug that works differently, but may also work for AI pain. I don't know of anyone who has tried it. Anyone here try Zyrtec? Did it work for you?
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