Arimidex - Coping with the SE's
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Hello everyone. I am new here, just joined but feel already welcomed by all of you!
It's 2 weeks 3 days that i'm taking Arimidex ( my oncologist first recommendation was Arimidex for 10 years, so it's not a choice but a must ). At the start of 1mg dose, i felt fine. Still have no sleep problems, headaches nor nausea, vomiting. Thank God! and I pray that I stay safe from all the dreaded side-effects!
Unfortunately, a surprise side-effect shocked me.. and that is: 1) High Cholesterol Levels + High Triglycerides 2) High Pulse Rate! and these were found out on 01 May when i was on my routine blood-checkup with my endocrinologist... I've never had any heart disease and my heart was always checked and the report used to come out normal! Now that i'm on Arimidex i have it for the first time. I feel like confirming it with you guys: Is the high pulse and high cholesterol levels due to Arimidex? If yes, then any advice on how to deal with them?
I'm so confused and worried! I am already a diabetic, have thyroid problem, have peptic ulcer. I hardly eat anything! That's why it drives me insane knowing how can i get high cholesterol! Please! Suggest some tips, i would be very grateful. Thank you so much for reading! Wish you all a healthy happy life
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Sweetrose8--yes, the cholesterol and triglyceride increases are from the Arimidex. That is a side effect of all of the aromatase inhibitor class drugs. Doesn't matter what you eat or how you eat, it won't change unless you take more meds, or go off the arimidex, and it may not change when you go off the arimidex. It didn't for me.
A side note for gals on an AI AND a cholesterol drug (especially the statin class drugs like Lipitor) who have muscle aches and pains and joint aches aches and pains. The statin drugs have a side effect of liver and and muscle damage that can be a warning of severe muscle damage that leads to kidney damage (the "rare but serious side effect"mentioned on TV) that presents as muscle and joint aches and weakness. Blood tests for liver function and kidney function can determine if this is going on. I mistook those effects for side effects of arimidex, and apparently many women can do the the same. I was luck that my PCP was aware and checked my blood tests more often than required, the damage was found before it became permanent and reversed when I stopped taking the statin and took a 2 week break from arimidex. If you are on both drugs it might be a good idea to discuss getting blood work done more often than the 6 months to yearly that the statin drugs generally require.
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NativeMainer , Thank you for replying back, now I feel sure and not doubtful. Oh! You helped on a new piece of information. Due to my high levels of cholesterol my endocrinologist prescribed me Crestor (Rosuvastatin) to control the levels and it's 8 days since i'm using it. Thanks again, now i'll be more conscious in talking to my doc regarding frequent blood check-ups. God Bless!
Any idea about the pulse? Is it dangerous for the pulse rate be high for a long time. On 1st May my pulse rate was 110 bmp. Today, i checked it's 125 bpm. Any help?
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SweetRose8--a pulse that high can put a strain on the heart, depending on a lot of other factors. Do you know what your blood pressure is? People with lower blood pressures generally have higher heart rates. Some drugs cause chemical changes that can cause increased pulse rate. How much caffiene do you take in? Not just coffee and cola but Mountain Dew, chocolate, energy drinks (especially energy drinks!) and things like No-Doz are mostly caffiene, and that can cause a high pulse in sensitive people. Also try checking your heart rate several times a day. Just the act of counting your pulse can make it go up, but that effect will fade with repitition. You may have heard of "white coat hypertension"? When someone has a high blood pressure when seeing the doc but not at ther times? Same thing can happen with pulse rate, too. Also, higher pulses are normal after activity, are you taking your pulse after you have been resting or quiet for at least 20 minutes? If your high pulse keeps up your doc will probably give you a medication (a beta blocker) to help slow it down. But first he/she will want to figure out why it's high all the time. Have you had an ECG or a stress test? That will give some info, and blood work will give more. Finally, normal heart rate range is defined by the old, familiar bell curve, with the highest and lowest 10% as the cut off points. That means that there are 20% of the population who's pulse is either high or low and still normal for them. You may simply fall into that category.
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Native Mariner, although I remembered the warnings about Arimidex possibly raising cholesterol levels in statin-free patients, I had forgotten.
I'm on Simvastatin as well as Arimidex and my liver function blood tests taken last month by the PCP indicated a jump in triglycerides. We attributed that to the fact that I forgot to fast beforehand, which very well may be the case, but I'm going to talk to his nurse about the interaction of the two drugs in relation to the results and the other things you mentioned, along with additional yearly blood tests (cholesterol labs while on Simvastatin used to be every 3 months but now he's said yearly. What changed that schedule, I have no idea).
Thanks for the info!
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I do not exactly know what reading was/ is of my blood pressure, as it is always checked only when i go to a doctor and i tend to forget when i reach home. But yes, i know that my blood pressure is normal. Never had a high pulse before.
- I never drink coffee, energy drinks or other mentioned and my intake of cold drinks is very very less - for example: when my daughter drinks a can of Dew I just have a sip of it and that too, a small sip once a month. so it's negligible.
- I have always checked my pulse only when i visit a doctor, so yes, i get very frantic and am always in a rush at that time. But again, years before also i've visited many doctors and pulse used to be normal in the same hectic situations.
- Yes, i had ECG, report was normal.
Taking your words into account, i think i will monitor my pulse more often. Then, things would get much clearer. I will even book an appointment for the next week with my oncologist and readily discuss with him. Thank you very much!
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Jankc--the standard of liver function testing when starting a statin is before starting, every 3 months for 6 months to a year and then yearly after that. My personal opinion is that us gals taking an AI should stay on the every 3 month scheduled until the AI is done, but I don't set medical policy. And yes, not being fasting can affect the cholesterol results, but not really by very much.
Sweetrose8--well, a sip of Dew certainly isn't enough caffeine to be an element. White coat hypertension can develop over time, and often develops after a significant (as in life threatening or life changing) diagnosis. The normal ECG rules out a whole class of reasons for a high pulse related to the heart's electrical system. Keeping a record of your pulse at various times will give you some more info, and getting one of your docs to carefully review ALL your meds and their potential side effects and interactions is a great next step! Let me know what you find out? I'm curious now. And it's ok to tell me to mind my own buisiness, too!
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Thank you, NativeMainer. Yesterday, I contacted my oncologist and he said to go to a cardiologist and have a check-up there, which will be my next-to-do thing. Yes, that's a good idea! I'll surely list all of the medications to my doctor to review them (i had given him a list of medicines that I take.. before starting the Arimidex, and he just nods every time and says: ''it's fine! nothing to worry about'', I personally don't like my onc, I feel he doesn't give me much time and am mostly ignored). I take lot of medications so it tends to be a necessary step to discuss this. (Thanks, I get so much help from you!!!)
Oh no no no. I understand your curiosity and will definitely update you with what happened when I meet the doctors and with my results of tests. A sure thing! Sharing is caring good health wishes to all~
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NativeMainer, you've scared me, but I appreciate it. I'm on both Arimidex and Pravastatin. Because of the severe joint pain and stiffness, I'm taking a 4-week break from Arimidex, per my MO. I didn't realize statin drugs could also cause muscle damage. I'm getting blood work every 6 months.
Nothing's simple, is it??
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In 2006 I was prescribed Arimdex. The side affects were horrable,every joint hurt, yes even my jaw. a\lthough I did not realise it at the time I was very confused.
My family stopped me driving after I broke down crying at a green light - I cold not remember what the lght was for.
I had gone to the doctor because of the joint pain and was advised to stop taking the meds, until I seen my onc - about 5-6 weeks.
By the time I saw him - I felt well no joint pain no confusion. With a disabled hubby and a morgage i refused to re start taking Arimedex. The doctor wanted me to try another - howeer he was of the opinion, that I wold still have a degree of confusion.
I took nothing and went back to work, fast forward to 2012 - I was now stage 4 and on Letrozol. I have a small degree of confusion and night sweats.
although I would never ever recomend following my example - for me it was the right thing to do. The morgage is almost paid, my hubby will not be homeless if the worst happens to me. also I had 6 lovely , almost pain free years.
I sang, danced, laughed and made lovely memories. If I had stayed on the meds- I would have been i pai , unable to work and we would have lost our home.
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harvey - I'm sorry you had to make that difficult choice. There is no crystal ball to show us our futures and it seems that there are no right or wrong answers through all of this. The best we can do is educate ourselves, make those "plus and minus" lists, and go from there. The choice you made was the right one for your life at the time and you seem at peace with that.
Do you mind if I ask what type of BC you have and what the rest of your treatment plan was in 2006 - surgery, radiation, chemo?
Thanks for sharing your experience - please take good care of yourself and your hubby!
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Sweetrose8--Good luck with the cardiologist, here's to hoping you get news that it is just a little thing with an easy fix!
WaveWhisperer--didn’t mean to scare you, I just don't want anyone else coming close to permanent muscle or liver damage from a "safe" drug while focused on a "problem" drug.
Harvey--I'm sorry you got put in that position and had to make that choice, but I applaud you for having the courage to do what you needed to at the time. Don't let the medical folks minimize the 6 lovely years and the security you have for your hubby when they discuss your choices with you. Everyone has to do what is right at the time, and the consequences can be dealt with. Kudos to you!
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I have been taking Neurontin for one week and it has helped some with sleeping. I believe it is also helping my muscle and joint pains. As I told my physical therapist, I am like a forest fire that they are trying to put out. You put out one hot spot and another one starts. I am very glad that I have found her. She listens and really has helped my neck and upper back. Now my feet are acting up again. I had bunion surgery almost 20 years ago. They came back and have pushed the alignment of my feet out and my left foot has a neuroma in it and at night the pains are so bad. She seems to think she can help me.
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Can anyone explain why a stage 2 IDC with one node, PR,ER,Her2 pos who had a double mastectomy needs to take AIs or tamox? I thought all the breast tissue was gone and since there was no need to rads, is this not so?
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motherofpatient - There are a few reasons that hormone therapy is still recommended even if you have bilateral mastectomy.
First is that there are always breast cells left behind under the skin. The BS does his/her best to remove all the breast tissue, but it is apparently quite difficult to tell where skin and fat layer stops and breast tissue begins.
Also, cancer cells can travel both through the lymph system and via the bloodstream. Lymph node biopsies indicate if anything has escaped via that route, but unless things are quite advanced and there are symptoms or there is evidence on tests or scans it is difficult to know if the cancer has escaped through the bloodstream. Hormone therapy addresses any cancer cells that might have left the breast via the blood and spread elsewhere in the body.
Best wishes!
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SweetRose, has your thyroid TSH level been checked recently? An overactive thyroid, or too much thyroid medication can cause an elevated heart rate.
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Hello Rocket ! Yes, my thyroid TSH, T3 and T4 levels have been recently checked, they are totally within the range.
Long ago, my TSH levels were high and my T3, T4 were normal so my at-that-time doctor diagnosed it as hypothyroidism + multinodular goitre. He prescribed medicines. But with time i had changed many doctors and now the latest doctor, the same endocrinologist (who treats my diabetes, thyroid and peptic ulcer) has recommended me to take Euthyrox 75µg daily before food for five days and the rest two days only 50µg. Due to that medication my TSH levels were well controlled!
Yes, you are right! Those medicines might have elevated it, I get that feeling now too. As the doses have been increased! (unfortunately the negative part is that Diabetic medication also gives a fast heart rate as a side-effect )
Today, went for a thyroid biopsy!!! As to rule out any malignant nodules which incidentally were detected. Ouch! Just the injection prick hurt. The rest went without pain and now that 5 hours have past.. feel slight pain while swallowing. My poor luck did not allow any early appointments with my doctors so am waiting for the appointments to the onc, cardiologist and endicrinologist then will discuss medications related side effect. Pulse rate still high: 118 ! Blood pressure: 127/81. Thanks Rocket
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Arimidex and dry mouth. I went to the dentist to have my teeth cleaned. This was the first visit since my surgery and radiation. I let them know about my surgery, radiation and the Arimidex. While she was cleaning my teeth she asked me if I had dry mouth since the radiation. I told her mine was internal and usually have less problems with saliva glands. She said the Arimidex might be causing it. I really didn't think about the dry mouth but I have been having problems with swallowing at times and during the cleaning I had no problem with feeling like I needed to spit (in the past if I held my mouth open too long saliva would build up). She noticed that my mouth was dry. She gave me samples of biotene. Any one else having this problem and if so, does the biotene help?
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I LOVE Biotene mouthwash!
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Yes my mouth is very dry which leads to dragons breath. Not nice.
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Started using the Biotene mouthwash last night.
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Re: statins
My DD was told by her PCP that in 2 years statins will be a thing of the past. There will be another drug for high cholesterol. Apparently, there is little evidence that statins really do any good. In the meantime I will continue with my Lipitor...my levels check out OK for the last few years. Who knows?
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How often do they need to check my cholesterol? I had mine taken about 3 months before starting to take Arimidex. My cholesterol was a little high but my good cholesterol was high and as my doctor explained it to me it was like a natural Lipitor. At times I don't know who is suppose to keep up with things like this. I also had my last bone density test in January 2012 and my PCP told me they would take it every 2 years. I was already borderline osteoporosis so I don't want to get out of control. I am very small boned and I don't have a lot to loose. Being on Arimidex, what things should my PCP (or oncologist) be looking at? Not sure my PCP knows much about Arimidex; however, he is a good doctor and I just wanted to know what I should ask him to look at. I also noticed someone mentioned their blood pressure went up on Arimidex.
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They're waiting 2 years to retest my bone density. I'm concerned about that because several people have gone into osteoporosis after 1 year on AIs. I'm not sure who's supposed to be looking at what. It seems to me that no one is interested in looking at anything. I have another appointment with the nurse in July and it's a $35 copay (PCP is $10). If she doesn't do anything, we're going to discuss why I'm spending my money to see her. I could report whether or not I'm having SEs via e-mail.
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My bone density submarined after 18 months on arimidex. I was given fosamax and it held it somewhat.I quit the fosamax when I finished my time on arimidex. They tested me yearly when I was on it.
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There never has been actual proof of any connection between cholesterol levels and heart attacks. And if you look at the fine print on the TV ads or the patient info that comes with the statins it comes out and says it doesn’t have any effect on the likelihood of having a heart attack. Big pharma not only developed the drug, they set the target cholesterol levels! As more people take statins there is an increase in the rates of liver disease, which is a known side effect. It's a crazy world where we think we need a drug with a know serious side effect and no proven good effect, isn't it?
ClaudiaMetz--the usual deal is to check bone density before starting and AI, and every 2 years after that until the AI is done. Cholesterol levels should be checked yearly, but if you are on a statin and an AI liver function testing should be done every 3 to 6 months. Unfortunately, it usually falls to us to keep up with the details.
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Thanks for all the information. I am learning that it is up to me to find out what needs to be tested and asks questions. My question is what doctor to asks the question.
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ClaudiaMetz,
There is no one answer. My MO is keeping tabs on my bone health and orders the DEXA, gives the Zometa. He also checks my bloodwork. Others have this all done by their PCP. My RO, MO and BS all stumble over each other to order mammograms. I think my BS has finally won that battle for now. But I've taken it upon myself to see specialists for other SEs related to AIs. I'll then connect my MO with the specialists.
You just need to ask your drs who will do each of these things. Yes, you have to be proactive to protect your health.
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The following is my protocol. As we all know it seems to differ between docs and insurance carriers and health systems and probably even where you live
I'll be seeing my MO every six months for five years. She did NOT order (nor did any of my other docs) a baseline PET, CT, bone scan, CXR, etc. and feels the radiation risk outweighs the benefits in an asymptomatic patient with my BC stats. She ordered a baseline DEXA before I started Arimidex and the plan was to have that done every two years. However, my recent DEXA (after two years on the drug) showed a definite drop into the osteoporosis zone. I now have to treat this with a medication and since there has been an "intervention" I will have the DEXA scan once a year to monitor. My MO also does full blood panel, tumor markers (they are not always valid, but she says she is "old school" and feels more comfortable doing it), calcium and Vit D levels before each visit. She does a very thorough breast exam, listens to heart and lungs, and checks lymph nodes.
I've been seeing the BS every six months. Another thorough breast exam and she has ordered ultrasounds and MRIs for the post-surgical lumps that were being followed.
My internist / PCP has been treating the bone pain from the Arimidex, recommending anti-inflammatories and ordering some back X-rays prior to PT. PT will hopefully help me with my back pain and give me some guidelines for a more tailored weight-bearing exercise program to protect my low back (now at risk for non-traumatic fracture).
My GYN is also in the mix, helping to deal with some of the Arimidex side effects and also doing thorough breast exams.
It's weird....I take great care of myself and I basically feel like a healthy person, but you wouldn't guess that by reading this post!
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I was osteopenic before chemo, and after, my dexa was twice as bad. So I don't know what it will be after a year of A.
I see my mo every three months now, but until now, I had blood tests for mag every three weeks. I had been having blood draws for a full panel every six weeks cause I had issues. I get an a1c, cause I have diabetes, and a vit D test every three months. So even though its been almost a year since PFC, I will ne seeing him every three months until the mag issue goes away. Much love to all.0