Hi Girls, Im just wondering if anyone has had huge trouble with these meds. I had to come off arimidex because of side effects (I even lost my hair & had no chemo). Iv now been on letrozole for a few months & seem to have just about every side effect with this too. Im having big problems with nausia & vomiting but the worst one is the exhaustion. Im finding it really debilitating (exhaustion doesnt really cover it) to the point I can sleep at night & wake in the late afternoon feeling like I havent slept for a year. Has anyone else had this problem or have any tips on how to deal with it ???

I will be interested in the answers to this myself. Looking forward to Arimidex like a hole in the head!

Hi @PaulaN I have been on Letrozole for just over 12 months. Before that I was on Tamoxifen for 2 years. Yes the fatigue can be a big issue. I had hardly any side effects on Tamoxifen but have found Letrozole more of a challenge :/ With the fatigue I have found that I need to keep up some form of regular exercise. Strangely this actually gives me more energy! I also find that it helps immensely with any nausea and aches and pains. I walk every morning and this gives me my energy to get through the day. In the summer I also go for a swim most days. Recently I joined an exercise class to use weights and strengthen my bones. I found that my bone density was affected severely from Letrozole.The exercise class has turned out to be lots of fun and I love the social side of it. None of us have ever enjoyed exercise this much before. I feel very fortunate to have stumbled across this class! It has made a big difference to how I feel physically and emotionally.I also take a few vitamins and minerals to help counteract the side effects. I take magnesium, Vit C, krill oil, and glucosamine. Just last week I also started taking Curcumin capsules. These are a natural anti-inflammatory made from Turmeric. Always check with your doctors before taking any supplements in case they may cause any problems with other medications or health related issues for your situation.It is not easy, but I am finding ways around most of the side effects. I know it is important to find a way to live well on this medication for me, so I just keep searching for ideas. I have learnt a lot from reading other posts on here. I hope that you can find some things that help with your side effects. Maybe check with your doctor about your side effects too. Sometimes there can be other issues that are causing the symptoms, nothing to do with the medication, but we just think it must be the drugs. Take care. Deanne xxx

Hi Deanne, I have spoken to my GP & the Dr I see at the hospital. My GP put me on heavy duty anti nausea which I need every day. Unfortunately I cant exercise as Im a paraplegic & both of my shoulders are shot (at least I dont get joint pain in my hips & legs LOL). I am also having trouble with bone density & hand sensation, ankle & feet swelling, sweating, lack of appetite, concentration problems & forgetting what Im talking about mid sentence plus other side effects. The ones Im particularly concerned about are, I already had severe chronic major depression & the medication is making it much worse & the debilitating exhaustion. To the point Im considering going off the medication as its affecting my quality of life so much. The Dr at the hospital did say I could try tamoxifen but Im not keen on that either. Another Dr at the hospital did say I could go off the Arimidex & take nothing but is that too much of a risk ??? Its such a hard decision to make. Do I go off it & risk a recurrence or try to work through it ? I dont know

Gee Paula, you really have so many things to consider. All those side effects you mention are hard enough to deal with when you are completely mobile but it must be so hard for you with your restrictions. For the concentration and forgetfulness I am trying the Elevate app recommended by another lady on here. It is helping a little!I really don't know what I would do in your situation. Quality of life is so important. Maybe you could try Tamoxifen? I guess you just have to weigh everything up and make a decision based on the best info your doctors can give you. You have certainly given the AI's a really good try but those side effects sound like they would be very difficult to live with on a daily basis. I really feel so sorry that you have all this going on. It is so unfair that you have such severe side effects.In general the types of things most of us find can help are just not possible for you. Have you access to hydro therapy as maybe this might be helpful? Maybe someone else on here will have something helpful to suggest? Sending you a big but gentle hug. xxx

Hi Paula, I'm going to agree with Deanne in that I'd go with the tamoxifen. At least that way you can see if you have any side effects and make decisions based on your reactions to the drugs. I've been on tamoxifen now for almost 5 months. I did initially get mad hot flushes, aching legs, psycho mood swings and now my flushes are tapering off, legs aren't aching and I don't think I've been a psycho for a while :# :D. And again I totally agree with the hydrotherapy. Can you see a sports physio to try and get a program tailored to your needs thats not going to do you any damage?? Let us know how you go. Wishing you all the best. Xx

Side effects from Arimidex and Letrozole

23 Replies

PaulaN
Member
9 years ago
Hi Becj, I couldnt agree more !!!
BecJ
Member
9 years ago
Hi just want to wish you a good day today.
Be kind to each other.
Being positive is not always an option and telling people to get on with it and be positive makes them feel worse. I for one have a physical reaction of nausea when people tell me this.
I am happy and glad for people that this works for. But do be careful not to make people feel they are to blame for not coping.
I for one have had almost every side effect for every medication I have had to take. Including being allergic to many of the drugs including chemotherapies and tapes and still had to use them and instead take more drugs.
Your have good days and you have bad days.
PaulaN
Member
9 years ago
Hi Melinda thanks for your comment especially re depression. I get what you're saying about chronic pain (I have complications with my paraplegia). I appreciate your last paragraph, thanks.
Paula
PaulaN
Member
9 years ago
Thanks Kath Im having the Thyroid test on Wed
Paula
KarenneW
Member
9 years ago
Hi girls, I've been on Arimidex now since August 2014 and have no side effects at all, or maybe very mild stiffness in my fingers at times. I also take Magnesium which helps with the cramping. I think worrying about what side effects you are going to experience is silly. You need to commence taking the drug and see how your body reacts. I tried Letrozole (Femur) and it made me feel quite ill and yes the exhaustion was bad - so I made the decision to go back on Arimidex and haven't looked back since.
You need to embrace the fact that you have Breast Cancer and have been treated think positive and get on with your life instead of worrying unnecessarily about side effects that you may or may not experience. If you do get nausea I'm sure a chat with your GP, Specialist or Oncologist will sort that out in a flash.
primek
Member
9 years ago
@PaulaN I can well imagine your distress today and feeling p...d off with more hair loss. I hope the break will help. Tamoxifen is an option for women who can't tolerate the drugs you have tried. After all once upon a time that is all they had. I hope the nausea and hair loss settle soon. If they can sort these things out for you then hopefully your mental health will too. Please do ensure a Thyroid test has been recently done with your bloods. That usually doesn't cause nausea but can cause the other symptons including hair loss as well. Hope Monday is a better day for you. Kath x
melclarity
Member
9 years ago
@PaulaN

Ohhh I am so sorry!!!! and I can totally understand about the Depression. It is an absolute roller coaster, and so hard somedays to be grateful at all. I GET IT!!! I was interested in hearing from others, Ive been on Arimidex nearly 1yr and certainly havent lost any hair, and I hadn't heard of anybody losing it on Arimidex. Really hope others jump in who have experienced this, who can help! My side effects are chronic pain from Arimidex in the joints.

Just remember everything is relative, that how we feel is how we feel regardless of how much or how less it is! Hang in there! Melinda
PaulaN
Member
9 years ago
Hi Primek I finished radiotherapy in July.
Im super upset today. My GP told me on Wed to go off letrozole for 3 weeks to give my body a rest & he is going to contact the breast surgeon in the mean time. I woke up this morning with alot of hair on my pillow. I lost it with the arimidex & had just over 1cm coverage again. Hubby noticed a bald patch near the crown the other day a bit bigger than a 50 cent piece but this morning finding the hair on my pillow has really pissed me off (sorry about language) I'v had a gut full now & to be honest Im thinking these side effects arent worth it & if I get a recurrence I reallly dont care. Then I feel guilty about that because I know other people go through so much worse. My mindset is really in a bad place atm with my pre-existing depression playing havoc.
Paula
Kim_R
Member
9 years ago
@Cate64 thank for your reassurance on arimidex, time will tell. I was thrown by being told I had to change drugs but I am getting use to the idea now.
@PaulaN take care.
primek
Member
9 years ago
I'm just wondering if you have been investigated for thyroid function? Abnormal function can cause similar side effects. I take my letrozole with my evening meal as I had read people experienced less problems at night. I get some joint stiffness and have been tired but I'm still on herceptin and only finished chemo 4 months ago. How lobg since radiotherapy ? Some problems may still be related to that. Just throwing ideas out there.