Arimidex - Coping with the SE's
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Ruthbru, the two medical bracelets arrived by mail on Christmas Eve, and I LOVE them! The dressy one is very pretty and the sports bracelet will be easy to put on with velcro fastening.
Hope everybody had a happy Christmas holiday.
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Hi, just following up on the gabapentin and vitamin D questions. One day the pharmaceutical industry will be able to produce drugs that are tailored to our individual genetic makeup but for now, we just need to try different treatments and see what works best for us. I was already on gabapentin before getting breast cancer (for anxiety and related back pain). It always worked well for me and I only took it as needed with no side effects. I took it more regularly immediately after surgery to minimize the use of percocet. Again worked well with no SE. I continued at a slightly higher dose after starting zoladex and arimidex because it has ben clinically proven to minimize hot flashes in women on hormonal therapy. So far it has done the trick. I must stress here that the brain thing was most acute at the beginning of treatment with arimidex but has improved. But I don't blame it on gabapentin because I have never noticed it as a side effect. That said, some people get completely knocked out by it and others get no benefits whatsoever. Myself i tried effexor once and it made me feel weird and numb, so It just concluded it does not work for me. It may very well work for others.
I think the important thing to remember is that all drugs have side effects and may have serious adverse effects in some people Taking anything and taking nothing at all are both trade offs. I am more concerned with the long term effects of antidepressants than I am with gabapentin's which has not been shown to cause serious withdrawal SE (I researched it extensively before agreeing to take it). Also, I don't experiment on myself without a doctor's advice. My oncologist and GP are both fine with the gabapentin and vitamin D dosage (I take 5000IU D3 every 2 days and have blood levels checked every 6 months).
Hope this helps.
Caroline0 -
fmaury, thx for your feedback. I absolutely agree that we can be so different that what to one may be extremely beneficial to another may be totally detrimental. Our make-ups are all unique and there's probably dozens of key issues that all go into the equation, like our metabolism, our blood group, how old we are etc etc... As I said, my Doc said, he has generally found Neurontin is well tolerated. Im going to possibly start on new years day. (lol easier to remember)
schatzi howz your sleep lately? Im actually going through a "reasonable" patch for now....
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Glad you like them, Carole
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Hey ladies! Woo hoo! Today is my 2 years down, 3 left on Arimidex! Had a Dexa scan yesterday and hope my bones are holding up. I'm only 46 so I really need my bones, ha ha...
You can do it ladies, hang in there. I'm here to report that all of my side effects were helped tremendously by going on Effexor twice a day (hot flashes, back and hip pain). I also lost weight as others have reported. I had the trigger thumbs for awhile, but that went away on its own. I think it is so strange that there are some consistent side effects we almost all experience. I'm hoping the next three years go quickly and without any more side effects!
Happy New Year!
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Shells - good luck with the Dexa - I just had my 2 year out Dexa scan, and there was only a very slight lose/change from the one I had two years ago - which is normal - I was so happy, since I've had a really tough time with SE's from the AI, I just figured/assumed that it would cause me osteoporosis too - but it hasn't so far!!!!!
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Thanks, Linda! I guess I will find out next week. I need to get back to walking regularly, I know that is good for the ole bones and everything else. The holidays are so busy. Yea for you too, on a good Dexa. Hopefully we will continue with the good reports.
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After 3 yrs. on arimidex, my bones are still in the normal range. Hang in there!
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I wish mine were. I've been on it 2 1/2 years and had normal bone density when I started, and despite having a great vitamin D level with supplementation and taking a calcium pill, I have developed osteopenia. I also did weight bearing exercise. I will stay with the A-team for the duration if I am able however.
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Have to ask, after about 3 months on Exemestane, (and having various symptoms during those first 3 months), I have now entered a new, and I will call it, horrible phase, of stiff finger joints and trigger fingers. It happens when I sleep and it takes awhile when I wake up, to work out the stiffness. It seems to be getting worse, in the sense that the tendons of the Trigger Fingers are now sore all day and the stiffness and residual soreness doesn't leave during the daytime hours. I notice, along with this, my fingers are very swollen at times. The swelling really comes on when walking. Is this normal?
Saw my MO when these symptoms were just starting and she was already to change Rx's, but I thought it would be the same no matter what I took. I actually thought this new symptom might be a phase, like the hot flashes, which are mostly gone now. I told her I wanted to stick it out in hopes this too would pass. Has anyone here experienced this and seen it go away?
I also have some occasional shoulder incapacities (coming on from a poor ergonomic position at my computer), so it's not just my fingers, but the finger symptoms are the most consistent. Celebrex has helped with the shoulders. At the time, the fingers weren't bothering me during the day, so not sure if Celebrex helped with those.
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Hey, wait a minute... I am 99% ER+
It just dawned on me.
Is this worse than say 92% or less? I am of a good weight, and on Arimidex, but I can't possibly get rid of ALL estrogen in my body, can I? Although it certainly feels like it.
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Picked up my arimidex rx snd it appears Walgreens has changed suppliers. The new one is ZyGenerics-anybody ever get their rx from them?
Shells-were you excrutiatingly fatigued when you first started on Effexor? I stopped taking it because I could barely function I was so tired. If I thought the fatigue would pass, I would go back on it to get rid of the hot flashes and joint pain. Thanks.
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I hope that you don't mind me answering with my opinion,
Never tired on Effexor. I helped with the flushes. In fact it is a norepinephrine reuptake inhibitor as well as an SSRI so most people say that it gives them more energy. Unless it stops you from sleeping... take it in the am. Have to taper to get off and not miss doses in order to avoid side effects. Check them out on line. Is similair to Cymbalta in that way, which was approved for pain, so shouldn't cause muscle aches. Just my opinion.
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Thanks, Bedo.
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Effexor did not cause fatigue with me. I started with 37.5 and now take 75 mg. It makes me feel calm and happy. I may never stop taking it, even after I stop taking arimidex in two years.
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Actually, yes, it did make me sleepy at first, and a little nauseated as well. I switched to taking it at night and with a glass of milk or snack, and that helped a lot for the first couple of weeks or so. AMAZING RESULTS: I could tell after about 3 days that it was really cutting back the hot flashes. After two weeks, about 90% reduction in number and intensity of hot flashes, and joint pain was gone, although this was completely unexpected. I had no idea that would happen, as my onc's NP only mentioned it helped the hot flashes. But after two weeks, I suddenly realized that I felt great and figured out I wasn't in pain. It is such a blessing. I now take one morning and night. If you can push through the first two weeks, you should be ok.
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Thanks so much everyone-I'm going to try it again.
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kam170 I have had trigger fingers, I started to show signs of Dupuytren's contracture in my hands, lots of stiffness, joint degeneration.... Weird thing about the trigger fingers - I had about 5 fingers that got worse and worse, triggered all day as well as night, started hurting all the time, then one day they just stopped???? Same with the Dupuytren's symptoms, they just stopped one day. I had both for several months. I do still have a lot of joint pain and stiffness in my hands and that hasn't changed. Some women do find relief in changing the AI they are on - I didn't, but I've read that a lot have, so I think it's worth a try.
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Thanks Linda...yikes, had to look up that Dupuytren's Contracture...don't have that one, yet. Did you also have hand swelling? I started out with insomnia and hot flashes the first 3 months, then as these other hand symptoms came on, those symptoms went away. I thought, if my symtoms come in phases, this too shall pass. I'll give it 6 more weeks, then I see my MO for a 3 month check up. At that point, if it persists, I will try another drug. I just felt like what difference would it make; they all seem to render the same set of symptoms, but you've given me some hope.
I see you are from Reedsport. All of my surgeons and oncologists are in Oregon...Portland and Medford.
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Kam - Not too much swelling, only swelling is from LE in my left hand. Though when my hands are stiff it feels like they're really swollen, it's a weird sensation. My docs are in Eugene, but come over to Florence weekly so I could get most of my infusions there, which was nice. Why do you see docs in Portland too? My son lives in Medford and works in the ER at Providence, he kept telling me I should go down there for treatment because they have some great doctors. I see that you had carboplatin after the other chemos - I haven't heard of that before, interesting!
My hot flashes haven't gotten better and the AI's cause a lot of joint, muscle and bone pain all over my body, I'm in a pain management program with my PCP for these. I also get a lot of fatigue, none of these things have gotten better.
And where do you live in CA (you can PM me if you would like).
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musical...thanks for asking...actually had 3 FANTASTIC sleeps at DD's house over Xmas. I took 2 gabapentin and one Temazepam....slept like a baby! Had a heavy goose down pillow of hers to try and it was a miracle. I am going to CostCo to buy one.
Funny thing...every morning my Son-in-law came into the family room to see if I had spent the night in the recliner...was happy to see I wasn't there. Last night was back to normal without the pillow and a sleeping pill. Will try again tonight *sigh*.
Glad your sleeps have been better...keep on doin whatcher doin'!
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Hey Schatzi glad you got some decent zzzzz's
Well Im going to do a few things on NYD (newyearsday) Im starting Neurontin and see what happens. Xmas day and boxing day were KILLERS!!! Uhhhggg 30 and 31degr respectively, and we're NOT used to those temps here. It was ice ice more ice and fans on my feet.
the 2nd thing Im going to do is take some piks of my 2 years worth of hair growth. Its took about a month for my hair to grow after last chemo. That was at the end of Nov 2 years ago. Sooo Im counting 2 years of growth starting from NYD. I took piks every month up till about 1/2 way through last yr then kept forgetting. Thought Id do some 2 years ones though.
I have had a little respite lately from the sleeping dramas, but last night was sooo tired and went to bed at 10. Wide awake at 11 and thought oh yeah this again. NAH, SP for me. Had a good sleep.
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Spunky: I get my anastrazole at Walgreen's. I have about 13 days left on this rx. I may have to call them and talk to someone in the pharmacy as I want to keep with the same supplier as it's working okay for me, and if "ain't" broken, why fix it!
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Hello everyone, I don't know where to begin explaining what is going on with me as far as SE from arimidex are concerned! I have been on it since Sept 20 and I must say that from the beginning my main complaint was feeling always very cold and always feeling hungry! Yes, aches and pains were also in the picture, but nothing I could not live with.
However, things have changed for the worst as far as my emotional wellbeing is concerned!
I am crying all the time, I feel very depressed, experience mood swings, memory is shot, don't even want to be with people anymore!
I feel as if my husband and daughter are going out of their way to push every button in me to make me lose my composure. My husband cannot understand what is happening to me, he probably thinks I am being a bitch! This feeling is awful! All I want to do is to be left alone. My anxiety level is so high. How am I going to go through this for another 4yrs. and 9 months?
I never thought I would be affected this way. Most of what I have been reading on here is how unbearable are the pains many of you are experiencing and believe me, I do feel for you. It is inconceivable how easily we can lose control over our lives. I am so thankful to God every minute of my day and I know he's going to see me through this.....BUT......
Sorry for venting,
Mena
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Mena, I was in the same boat summertime and eventually got anti-depressants and anti-anxiety meds.....saved my life. Perhaps speaking to your GP re meds might be helpful.
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Scottiee1, I used to take Celexa many years ago and use xanax as needed but mostly to sleep. It took me 2 yrs. to get off 1mg. of xanax and the withdrawal SE were so awful...actually they were exactly what I am feeling right now on the arimidex!
I would really hate to get into that rut again! I wonder if she can switch me to something else?
Mena
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I am taking Zoloft (anti-depressant) was on it many years ago when I went through menopause the FIRST time.....stayed on it for about four years and then was weaned off with no problems
I am taking clonazepam (anti-anxiety) when needed.
I hope this info will be helpful.0 -
Mena Im really so sorry for all this youre going through. Arimidex for many of us is no walk in the park! For those of us who are Christians, we could certainly align it to a Job experience. Right at the end of Job God said "in all this Job sinned not" and yet through out we hear of Job making his "complaint" known. Sometimes we need to vent....and Arimidex sure lends itself to that.
"I am so thankful to God every minute of my day and I know he's going to see me through this.....BUT......"
"but"? I call the "but" part where Gods grace comes in even if we are foundering, losing our direction, composure, feeling utterly broken. I pray right now for you that Gods strength will bear you up in this. That He will guide and direct your decisions for what is right for your situation. Big Gentle Hugs.
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Mena just forgot to say, I've found that Ativan is a real great standby for me "when the going gets rough". It's something that I am sooooo grateful for because I don't have to take it all the time just only on an "as needed" basis. Sometimes I havent had to take it for weeks or months, but it's great for those anxiety times like pre procedures. It's been a life saver.
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Mena: YOu need to talk to your doc about this. He/She may change your AI to something that is more tolerable for you.
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