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

melclarity
Member
9 years ago
@PaulaN

Oh i haven't heard of that, i was on tamoxifen when i got a recurrence believe it or not. I dont regret taking it at all its a small % it happens to so i was just unlucky honestly. My hair has come back fantastic from chemo and 1yr on Arimidex no probs at all. Do whats right for you is most important. Hugs xo Melinda
PaulaN
Member
9 years ago
Hi melclairty I know exactly where you're coming from re Arimidex. I was sooo upset when I lost my hair because of it. The thing with Tamoxifen is I'v heard alot of people getting recurrences after stopping it & that scares the shit out of me
melclarity
Member
9 years ago
@PaulaN

I took Tamoxifen for 4yrs but unfortunately had a recurrence last year, but I must say I honestly didnt have any side effects on Tamoxifen that I was aware of and my Surgeon checked me yearly. I am now however on Arimidex and I have to say my side effects are debilitating, in chronic pain, I walk a few times a week now which is great, but exercise doesnt help the pain and my Oncologist said it won't as its due to that. Also the fatigue is severe, I have to lay down when I get home from work before dinner. This I think could be a combination of things though, Chemo takes a very long time to get over and thrown into menopause brings on severe fatigue too. I started hot flushes during Chemo and that purely was due to being thrown unnaturally into menopause, I dont feel it has anything to do with medications personally. I'd go for the Tamoxifen xx Hugs Melinda
PaulaN
Member
9 years ago
Cate thats so true, everyone's different. I know people that are fine. I just drew the short straw on this one. The 3 weeks off it is to give my body a break
Cate64
Member
9 years ago
@"Kim R"..... I have no side effects whatsoever from arimidex so you might be dreading it for nothing...
PaulaN
Member
9 years ago
Hi Jen, I take zofran for nausea, you can only have it if you've had chemo or radio apparently. I finished my radio July but GP said today its ok for me to take. Because my side effects are so bad he suggested having a 3 week break & he's going to speak to my breast dr.
Paula
Jennybutter
Member
9 years ago
Hi Paula,
I am on Letrozole too and I also am nauseous, thought it might have been the Herceptin but thinking back when first started that it never affected me, so must be letrozole. My bone density is ordinary too the things we have to take I wonder sometimes. My onco wanted to put me on Tamoxofin but I have had brain surgery so I said no.
Keep us posted mate. Cheers Jen
PaulaN
Member
9 years ago
Hi Deanne & Socoda unfortunately hydro therapy isn't an option due to complications with paraplegia. I'v been to a exercise physiologist before but with shot shoulders there wasn't much they could do
socoda
Member
9 years ago
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
Deanne
Member
9 years ago
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

Forum Discussion

Side effects from Arimidex and Letrozole

23 Replies

Recent Discussions

Fibromyalgia and Aromatase Inhibitors

Palbociclib-anti cancer drug effects

Herceptin

pimples on head

1st Chemo reaction !