To all ladies on Letrozole.......

FormerMember
FormerMember
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Hi girls. I have been taking Letrozole for almost 2 years now. I have developed a love/hate with this drug. I love how it keeps me safe, but hate the sore joints it gives me. 

I have tamed the side effects with cod liver oil and glucosamine.

I recently bought my usual cod liver oil supplements from Holland and Barrett. I trust their quality. This time their best offer was cod liver oil with calcium. I thought I would give it a try..........IT IS MIRACULOUS!! The pain in my joints has stopped altogether!!

They should prescribe on the NHS!!

Hope this helps all you sufferers of side effects.

Love J xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi there J, 

    What is the brand you take on prescription? I’m interested in seeing if I can get Magnesium Citrate on prescription too as I have real problems sleeping now. I think it could be linked to the high doses of calcium ( + VitD3 ) I have to take on prescription along side Arimidex. Thank you. Judith xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Shelky:  Misty Moley gave you one idea of what the dizziness could be caused by, but another one is BPV - Benign Positional Vertigo.  I got that one and simple adjustments cured it.  From time to time it will flare up again and I simply do the maneuvers and presto chango!  It's gone.  My point is to get checked.  Dizziness and vertigo can be caused by lots of things that are far less innocuous than having bad effects from meds.

    Adding to the rest of the thread, my Oncologist, surgeon, Primary and RT oncologist all check with me regularly to be sure I'm taking Calcium, Vitamin D, an all purpose vitamin and the glucosamine every day.  So far, aside from the time on generics, I've done beautifully.  No aches, pains or troubles moving.  Of course we're all different, but a lot of us react similarly at least.  

    Very good thread!  xxoo Mira

  • I was changed from accord to cipla. Within four days I had sleepless nights and dhiarea. I went to doctor and he put me back to accord . So I'll see how this works. He says it's the different additives that can cause the upset. Accord isn't brilliant but I had managed it better. So obviously the make does matter, 

    Pansy
  • FormerMember
    FormerMember in reply to pansy2468

    I have been on Letrozole since November 2017 and have lower back pain, joint pain (hips) and weak upper leg muscles ever since. I started taking magnesium tablets (250g) 4 days ago, 1 tablet a day, and on day two I noticed a severe redness on my cheeks, nose and chin (like a sunburn) and my skin was very dry. On day three my whole face was swollen and my skin felt like sandpaper and still very red. I am now on day four and decided to stop the magnesium as I think it is the magnesium in combination with the Letrozole causing these symptoms. No change in appearance  as yet but very interested to know if anybody else has experienced the same thing. 

  • Hi  

    Warm welcome to the group :)

    Sounds like an allergic reaction to the magnesium, unless you started taking any other meds or herbals at around the same time - Having said that we have magnesium in our bodies anyway so perhaps you don't need any extra and are now getting too much ?

    Has your brand of Letrozole been changed to a different make recently, as sometimes that can trigger oddball side effects ? Contrary to what the dr's and pharmacists will tell you they do have different fillers to bulk them up which some find upsets them.

    Have you tried any of the other meds or supplements to try and ease the letrozole aches and twinges - Like Vit B12, amitriptyline, Meloxicam or other (NSAID) non-steroidal anti inflammatory drugs.

    There are loads of ladies here suffering the same from Letrozonked who could offer tips on what worked for them - but it is all trial and error until you find what works for you i'm afraid.

    Take care, G n' j

  • FormerMember
    FormerMember in reply to Dreamthief

    Hi Dreamthief,

    Thank you so much for your swift reply. Before running to the GP I thought I might try this forum first! Forgot to mention I am also taking Adcal D3 but have a feeling it's the magnesium/letrozole combination. The letrozole I am taking at the moment comes in different packaging then the the ones I took before but not sure if it's the same brand and just different packaging or indeed a different brand. I will get on to your suggestions re other supplements and as you rightly pointed out "it's all trial and error" but sure something will work, I am sure! Thanks again x 

  • I too had been taking Adcal D3, got very fed up with bad indigestion.....

    Had a drug holiday from that, Alendronic Acid and Simvastatin (long story, was needing strong antihistamines) but gradually got back on Alendronic Acid followed by Simvastatin, took a shopping trip to Costco and found they sold D3 capsules.....by now I was only getting mild indigestion, took the D3 into my GP and asked about the Adcal. I could never cope with two a day, as I felt so ill. He was happy to take the Adcal off my repeats and advised D3 on alternate days. Now it’s hard to remember that so I do Monday, Wednesday and Friday.

    I gather Adcal must be incredibly cheap which is why it’s so widely used and prescribed; pity it causes me such awful problems! The argument is that D3 on its own is expensive? No, it’s not! And I have either milk, yogurt or cheese in decent amounts daily so the calcium in Adcal isn’t needed. I’m much happier, am probably getting more D3 and very littke indigestion! 

    Pah, wish it were so with other drugs like Letrozole! 

    Maybe we should all insist on being prescribed Femara? 

    Hugs xxx

    Moomy

  • Hi  

    My missus was on Letrozole (Femara) for 5 years and had Adcal+D3 all that time with no problems. Since her 5 year sentence ended in May last year and the last Dexa Scan results her GP reduced her Adcal to just one chew per day (was 2 daily) and stopped her Alendronic Acid tablet (one per week) and is gradually weaning herself of the other meds as the side effects ease off.

    She was placed on Femara® (the original maker) by her onco at the end of chemo and when transferred back to her gp was put on the generics but had loads of issues from them (even trying anastrozole at one point) that we persuaded her gp to actually put Femara on her repeat presciption so they couldn't give her anything other than those. 

    There are around six generics and a whole shedload of discussions in the breast group about them and which ones seem more do'able. A lot of pharmacy 'groups' bulk buy and repackage but it should have the makers name on the packaging somehwere. If you can find the brand name type it into the group search bar to see how other members have found them ?

    G n' J

  • FormerMember
    FormerMember in reply to Dreamthief

    Hi Dreamthief

    The letrozole I am takinig is made by Glenmark. Did type it into the group search bar but not that many girls/boys with the same brand. Seeing the onco in July so will definitely discuss changing brand. Off to buy alternative supplements shortly and see what happens!

  • Hi  

    Glenmark are made by an Indian company (Glenmark Pharma) and are imported and mostly repackaged by smaller independent medical supplies companies in the UK who then supply pharmacy chains and some health authorities - who tend to just buy the cheapest they can find when they need to order some in.

    There are several companies who also produce generic letrozole like Sun Pharma, Dr Reddy, Teva, Accord, Wockhardt etc

    G n' J