Hi Shellie

Don't get me started on this - my bête noire!

The letrozole you get is completely random and seems to be up to the suppliers of pharmacies - and probably the kickback they in turn get from the pharmaceutical companies.

I started off with Cipla from hospital for first month of letrozole.

Side effects from day 3-5 included slight chest pain, slight headache, light vaginal spotting, and ovary area aches. Nothing to overwhelmingly trouble me, and after 2 weeks all had gone. 

Hey, this is going to be a doddle I thought! How wrong was I.

Go to GP to get next 2 months' worth. Am given Manx brand. My God, the difference.

The main problem was depression hitting like a black cloud, I'd find myself in tears every five minutes and I didn't even know what I was crying about! Also, hair thinning, queasy, unsettled stomach, itchy skin, nausea, burning tongue and lips. Horrendous.

I had to stop taking it for several weeks.

I tried to get the Cipla again and went  around a dozen chemists, and none had it. 

Since then I have tried the Manx again and had Glenmark.

The main problems now is the absolutely agonising leg joint pain from ankle to hip, and having deveoped ocular hypertension since being on letrozole generally. I have posted elsewhere about this, and from my experience would advise everyone to get regular eye pressure checks while on letrozole, as high pressure in the eyes is symptomless, but may need to be monitored as risk of leading to glaucoma.

I have not now taken letrozole for a month due to both these. Waiting to hear from my eye doctor what they think. I see oncologist again in May. So I am ar a stalemate in that I am not prepared to risk my eyesight, and I am really having a hard time with the leg pain.

I think you will find it hard to stay on same brand - my GP even requested Cipla by name on prescription and still I couldn't get - and may find like me you are switched around by what the pharmacy has in stock. I just collected a prescription today for another two months' of letrozole, which is Accord. Heaven knows what side  effects those will bring if I do start taking again!

I think the side effects may vary between people and of course, what brands they are on. While I haven't had the vaginal spotting or headaches like I had when I first started, I have had different side effects with the different brands, with the leg pain now ongoing for at least 5 or 6 weeks, even though not taken for a month.

It is such a Russian roulette game with this med, which I never knew before. Makes me angry that you can't get what you ask for, and I don't know if any different if you are a private patient and not NHS? Maybe someone else knows on that.

Good luck anyway! You may get away with very little problems, don't go solely on my experience as other women will have different stories.

Shellie 

mu experience with tanoxifen is sane different brands cause chaos 

however my cheninst are amazing and akways get my brand which is tillomed o won't take any other brand but last month they gave me 18 of my brand and 10 of mixed brand owing take these not worth the side effects so that did stress me that every month up until now it's been ok hope the change is not gunna last if I will be not taking any other brand .

bood luck love Lara ️

Thanks for post Lara, glad to hear some chemists can get same brand in for you x

Laraj, did you actually get 28 boxes, or individual tablets.? I get 2 boxes that's 8 weeks every 2 months.  I have an old British formulary of meds. The price per box £100. I think production during pandemic affected availability. Then just incase of side effects or GP change treatment they don't want waste. I live in Scotland where prescriptions are free. If private they'd pay.

Pips 

hello lovely 

I had 28 tablets in total not 28 boxes they have 18 of my brand and 10 of a mixed brand x 

love Lara ️

Pips 

Oh wow 

these are £100 a box I never knew that expensive crazy price 

love Lara ️

Pips 

Oh wow 

these are £100 a box I never knew that expensive crazy price 

love Lara ️

Hi. I started on anastrozole 3 and a half years ago and the side effects almost finished me off. As it was the pandemic and hospital appointments weren't happening I thought this was the norm. It started after about 3 months the joint and muscle pain, hot sweats, insomnia were unbearable. I got up the stairs at night by hanging on to the spindles. I couldn't walk the dog or anything else much for that matter. My oncologist listened at my first meet 17 months after surgery and just said oh that is the medication. I finally got some relief two years ago when a call for my routine mammogram I was asked was everything ok. As a result of speaking  to the receptionist my breast care nurse took me off the tablets and replaced these with LETROZOLE. She did say that as these are a member of the same tablet family I could still get side effects. I do but more tolerable. The pain isn't as aggressive, hot sweats are constant and my hair resembles a perm most mornings due to being wet with sweat. It's on off with the bed covers all night and broken sleep each night as opposed to hours of insomnia. The insomnia alone left me exhausted every morning. Pain has progressed in my hands and on researching this it can be attributed to this medication, which my pharmacist agreed with. I realise the side effects of this medication will likely range from none to severe, as I have read where patients have come off it as they were in so much pain. I can relate to this as initially I would describe it as debilitating. My nurse said it was debilitating arthralgia. I had a very positive experience with all the breast care professionals but at no point did anyone mention these side effects. Yes they are in the little leaflet in your tablet box, but I wasn't prepared for it. Life is more bearable due to listening to my body. If I do too much I suffer for a few days after. It's a bit at a time and what doesn't get done, well that's ok.

Hi there, don’t know if this will help , I’m on Letrozole ( poison I call it) and have had nearly every side effect listed. Bone pain, weight gain, hair loss , high blood pressure , could go on but won’t bore you to death! Anyway the bone pain is much better since taking Magnesium 150mgs morning & night ( check with your doc first) I take Lamberts make . I also take Pilfood for hair loss, Calcium ( at lunchtime as it counteracts the magnesium ) , Vitamin B for the hair loss . I really notice the difference if I don’t take the Magnesium , my joints & bone pain get worse. I’m also on Citalopram for hot flushes( they are a mild antidepressant but work for flushes) . Hope this helps xx

Hi. Thanks for the information. My hair was fine until I changed to Letrozole, now it's very thin on top. I have a diet high in calcium so take vit D in winter to help with absorbing this. I'll look into vit b for my hair as I was upset as it was so thick and was my crowning glory! Again I feel we have to plough through our side effects to see if letrozole is the cause then remedy ourselves or go to our GP.  

Good luck ! My hairdresser recommended Pilfood x

Hi LCR & thanks. How long have you been taking Pilfood and what make is it?  Have you seen an improvement?x

Only 4 weeks , slightly less shedding but you need to take it for 12 to notice any difference really x