Ongoing issues with hormone blockers

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Hi all

Just having a bit of a down day I guess.  I'm currently on letrozole and Calcichew-D3 for bone health and just wonder how other people feel physically on a daily basis on these drugs?  I expected side effects but thought they might have cleared by now.  I don't feel tired or have mood swings, but constant terrible stiffness, particularly first thing or after sitting for long periods and don't even ask about turning over in bed at night!   I try exercise with weights but my muscles are so painful afterwards that I can't exercise again for days.  I've been on this combination for the last six months (although I don't always take the calcium as I find this can cause digestive issues) and every day seems to be different with which part of me aches, upset tummy etc, sleep disturbance, generally feeling a bit bluuurgh.  I work at home by myself so don't have people to chat to to give me some sort of perspective.  Would like to know if this is normal for others a few months in or should this all be settling and I should swap to something else.  I certainly don't want to stop taking a hormone blocker.  Anyone else's experience greatly appreciated.  Thanks everyone x

  • Hi there, I've been on Letrozole for seven months and I do have stiff and aching knee joints. I know just what you mean about turning over at night. It's like my knees have set into one position and difficult to loosen off and oh so painful. It wakes me up on and off throughout the night. I have to be honest though, and say that my knee joint pain started before Letrozole. I just think it has exacerbated it. I'm 71 so I think it was on the cards for me. Otherwise, I have been fortunate, that so far, I haven't noticed any other symptoms of note. I take Vitamin D, but not calcium. My GP advised me to calculate my calcium intake by a link he sent me. I was above the threshold so he advised me that as my dietary intake was perfectly adequate not to take calcium supplements. 

  • Hi Dulcibella

    Sorry you're finding the stiffness a problem too.  I wonder if going on to letrozole straight after chemo induced menopause has made the drop in oestrogen all very sudden for me and I'm getting more menopausal symptoms alongside the stiffness.  Definitely agree with you that pre-existing niggles are exacerbated. 

    Really interesting to hear what your GP said about calcium and your diet.  I was just slightly in the osteopaenic range on DEXA scan so they prescribed Calcichew, but my diet is excellent and I'm sure I get enough. Also I'm trying not to take too much dairy, but get enough calcium at the same time - just another thing to think about! 

    I'll try and be patient and see if things settle down, I suppose it's early days really and just hope it's doing its job.  Thanks so much for taking the time to reply - that's been helpful x

  • I've been on Letrozole and ad-cal D3 tablets since June and persevered until now. I just swallow my calcium tablets not chew them so I wonder if that would help with the tummy trouble. 

    The fatigue and knee pain have been the worst of the side effects for me too. I have an appointment with the oncologist at the end of the month to discuss changing to a different hormone therapy as I don't think I can face 5 years of this. I thought the.side effects would have improved by now too. I have seen people recommending cod liver oil for joint pain on here too. I find Voltarol gel on my knees helps too but as it's an anti-inflammatory you can't take ibuprofen with it. Biofreeze gel is good for the pain too. (Cheapest in Home Bargains). 

    I've been referred to the exercise scheme and physio and occupational therapist for help with the side effects too. 

    I hope you feel better soon. x

  • I was just in the osteopenia range as well, but again as I was over seventy I wasn't surprised. I'm interested re: dairy products. I'm never sure what to do for the best. It's a balance isn't it? I know that Letrozole has a propensity to raise cholesterol levels, so I eat 0% cottage cheese, 0% Fage Greek yoghurt, and organic skimmed milk. I confess to still having a scraping of butter and I treated myself to Brie and Stilton at Christmas! All gone now though! I hope your side effects ease soon, they are so wearing when they are persistent. xx 

  • Hi, I've been on letrozole for 2 and a half years now and I find that I get a lot more stiff and sore if I have been standing a lot or if I have not walked enough. I've figured out that if I average about 10,000 steps a day over a week it is so much more manageable with very little pain or stiffness.

    As for calcium, I couldn't stand the chewy ones so I buy them from Boots, 3 for 2 offers usually, and take the calcium plus Vit D.

    My cholesterol is also up, another side effect, but I have done quite a lot of research on diet and cut down on saturated fat and eating oats and more plant…..I reduced cholesterol by 1.0 in the last year.

    Best wishes 

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  • Hi, I’ve been on Letrazole exactly one year and it’s really settled down with minimum side effects now. Worst side effect is hot flushes and that isn’t as bad as it was. 
    I walk daily and go to gym twice weekly and this has helped a lot. 

    I even had trigger finger in both hands but that has completely gone now too. 
    Hope it settles down soon.

  • Thanks so much for replying - so good to hear of other people's experiences.  Sounds like you're on top of it and have asked for help.  I'm really not very good at that and need to get better.  I'll try the gel products you've suggested and see where I'm at.  Hope the physical input improves thing for you too.

  • Yes diet really interests me too - mainly because I'm not sure I get it right.  Is it better to have organic skimmed or plant based as just one example.  Maybe everything in moderation.  When you need calcium but should be low fat, low sugar etc it is a challenge.  I have to admit like you I do try to stick to being good, but it's not realistic to think you're not going to treat yourself to foods you like every now and then.  I've happily given up alcohol, but cheese I couldn't live without! x

  • Thanks for letting me know that.  I'll look at swapping the calcium tablets, they really don't suit me.  Like you I do get a lot of steps in and everything eases when I'm walking but I'm like tin man again if I sit down for an hour or so.  I do most of my walking first thing in the morning, so maybe I need to look at fitting more in throughout the day, very difficult when your job is desk based but I'll have to find time.

    Well done with your cholesterol - I'll have to ask the GP about getting this tested as no one has ever mentioned it so thanks for raising that.

  • Oh that is reassuring, thank you.  Maybe I just need to be more patient.  I agree exercise does help and my body might just need time to get used to it all.  I am self-employed working at a computer all day, so I do worry about the dreaded trigger finger and not being able to work!  So far, I haven't been affected by that so hopefully that's one I won't have to deal with, but so glad it's improved for you x