Hi Ladies .
I want to know if there are many of you out there who are on the oestrogen inhibitors , ( I´m on letrozole ) who did have SE at the begining , but now , after time , have found the SE diminishing or even gone completely .
I know there are many who have no side effects at all , and I envy you greatly , but I really want to know from those who do or have had SE and found that with the benefit of time , things improved .
Hi
Ive been on letrozole for 6 months. Initially a few side effects then feeling great. Over the last few weeks a lot of joint and muscle discomfort I feel as if Ive aged about 10 years some days. I guess everyone is different with these drugs.
hi,
i started taking letrozole approx 6 months ago and the side effects were horrendous, almost from the off.
i purposefully didn’t read the leaflet - so that i wouldn’t get ‘imagined’ side effects!
i’m a little toughie and am prepared to put up with a lot - especially in our situation - but unfortunately the side effects for me were so bad that my onc took me off them hoping that my symptoms would disappear. although my joint pain has eased it is still quite bad so i have been referred to a rheumatologist.
although i am post menopausal, my onc has put me on tamoxifen. although this is not ideal - i have to say i have been fine on it - even my hot flushes have lessened.
the idea is that i see rheumatologist and go from there with regard to going back on to letrozole.
to be honest, it wasn’t until i stopped taking it that i realised how ill i felt on the letrozole - not just the joint and muscle pain - but my general health.
i have a good prognosis and don’t want to go back to feeling like crap - so i am going to have to have a long hard think about going back on it.
regards
gill
jackwagstaff - I have been taking Letrozole for almost 9 months. I had a few pains in fingers and toes which only lasted a couple of weeks. The other symptoms have gradually developed but are bearable. They include stiff knees and hips after sitting, often being too warm (but not sweats), disturbed sleep (but it’s better on cooler nights), tinnitus, a strange anxious feeling (I don’t mean mental anxiety as such, more a physical feeling) and poor short-term memory. I think that’s all. These are all symptoms of low oestrogen. This has also exacerbated pre-existing joint pains in my hip and neck. I certainly would not consider stopping the tablets because of these side effects though, if they stay like this.
You asked if the symptoms had improved with time. I take cod liver oil and glucosamine sulphate to help with the stiffness and evening primrose oil to try and avoid hot flushes, which help me. I don’t think anything can improve the mental effects of low oestrogen, though.
Good luck.
Ann x
Hi Ladies, I’m not on Letrozole, I’m on Arimidex but the se’s are a carbon copy of yours Ann. Exactly the same. It’s bearable and I’ve tried taking 4 hourly paracetamol with little effect, so now I’m not taking anything. I also take Bondronat for the spine tumours. Like you, I wouldn’t consider stopping the tablets otherwise I’m a goner! I’ve been thinking of taking glucosamine as the district nurse suggested it so I think I’ll go and get some and start taking them asap. Do you just buy them from Holland & Barrett or do you get them somewhere else?
Hope you are all feeling well today, take good care of yourselves, Lots of love, Dianne x x x
Hi ladies I am on anastozole for the last 3 weeks after chemo and surgery x2. I am awaiting a rads planning appt inc CT scan. Had a DEXA bone scan to check how knackered my poor old bones already are once the Arimidex kicks in. Have been taking Glucosamine Sulphate 1,000mg for quite some time pre BC. So I am interested in how any s/e are minimised like jackywagstaff. Love to all Jackie
Hi Ladies, Just thought I’d mention that someone else has suggested taking Turmeric tablets as well as the Glucosamine. Apparently it has marvellous properties for dealing with joint pain etc. I’ve looked it up today and it does say all of that, so I’m going to give them a try - nothing to lose really (except my cash!!).
Hope you are all well today, take care, lots of love, Dianne x x x
Hi Jodie , Do you think a curry a day would work as well , that "medication " I could go for !!
Hi Dianne
Just check the contents of the Turmeric tabs, because the curcumin (the stuff with the cancer fighting properties)in turmeric has a very low bioavailability if consumed on its own - ie it is very hard to be absorbed into the bloodstream. But eating turmeric with black pepper (it’s the piperine in pepper) increases it’s absorption by a factor of 1,000. So you need to make sure the tabs contain pepper or they are almost useless.
The best way to get turmeric into your system is to dissolve it in a little olive oil with the black pepper and just add it to whatever you are cooking.
finty xx
Hi every body
I have been on Letrozole since 10 March. My worst problem is thirst, which I am told is unusual but is listed in the side effects. I was very interested to read other comments and reassured to learn that the short term memory loss is not just me! I get hot flushed and if I get sweaty my skin itches. I also have joint pain and breaking and splitting nails. My GP has given me a diet sheet to increase my calcium intake, but having tried it and realised I will either go mad and be the size of a house, so I have asked for a supplement.
Hi Ladies, Jackywagstaff, I’m sure a curry would help but as Finty says if you take the tablets they have to have the pepper. (Thanks Finty, what would I do without you???) I will also do as you suggest and add it to my cooking with the olive oil and black pepper. Had a terrible morning. For the last couple of days I’ve noticed that the left side of my jaw hurts a bit when I open my mouth to eat. This morning there was a lump at the side of my cheekbone. I nearly had a heart attack. Rang the onc ward at the hospital. They were very nice, but useless really. Told me just to ring to speak to the onc on Monday. I worked myself up into a right old state. Anyway, a couple of hours later I noticed it has moved. It’s now right on the bone running up into my hairline near the top of my ear. Someone once told me that any lumps that move around like that aren’t life threatening so I hope he was right. It still hurts a bit when I open my mouth wide enough to eat though. Anybody got any ideas?
Hope you are all well today, take care of yourselves. Lotsa love, Dianne x x x
Dianne - The lump sounds as if it could be some sort of blocked duct. You asked where I buy my Glucosamine. I get them in Tesco usually, or Sainsbury’s. Tesco do a buy two get third free, so is quite good value.
carnation - I am thirsty too (forgot to mention that!)but I think it may be due to the calcium I also take (Adcal-D3).
Ann x
I did´nt know that about the thirst Carnation , I´m constantly thirsty , I think it´´s that which is giving me cramps in my hands ,feet and legs , perhaps I´m loosing so much in sweat that I need to take in more water , and dare I say it posssibly salt as well ?
Just goes on does´nt it ?
Kris
Hi Kriss,
Have you tried Tonic water for the cramp? it has Quinine in it, which is supposed to be good for cramp!
Think you might have to give the Vodka a miss though!
Might be worth a try!
Hugs
Sandra xxx
Hi Everyone, Hope you’re all well today. I too am constantly thirsty with a dry mouth so I just drink loads of water. The tonic water helps with cramps as Sandra says. Ann, what is Adcal? You’ll have seen on the other thread that the lump is not cancer (what a relief, but what a weekend. Dreadful, but I’m going to make up for it this weekend!!! I got the Glucosamine/Chondroitin/MSM from Holland and Barrett on Saturday. They’re nearly £17.00 for 60 and you have to take 3 a day, so I’ll check out Tesco most definitely.
Anyway, hope you are all well today and that you have a happy, painfree and thirstfree weekend.
Lots of love to you all, Dianne x x x
Dianne
Adcal-D3 is calcium and vitamin D3, prescribed by my GP at my request because I am on Letrozole.
The Tesco Glucosamine is £8.00 for 60 x 1000mg. As I say, if you buy three of any of the vits, etc, you get the cheapest free, so I buy them 3 at a time and save £8.00.
Ann x
Whoops - posted this before I had finished!
Dianne
Adcal-D3 is calcium and vitamin D3, prescribed by my GP at my request because I am on Letrozole.
The Tesco Glucosamine is £8.00 for 60 x 1000mg. As I say, if you buy three of any of the vits, etc, you get the cheapest free, so I buy them 3 at a time and save £8.00.
I buy the combination Glucosamine/Chondroitin in Sainsburys. I think they are about £6 for 60 (one a day), but not entirely sure.
Ann x
Ann 04
Very interested to hear you have the thirst problem. I am not (currently) on any calcium supplement so I think it must be the Letrozole which is to blame. However having a thirst is much better than other problems.
Dianne - Which other thread? I must have missed it but I am so pleased you had good news.
Ann x
It’s ok, I’ve found it. What a lovely man!
Ann x