Are you on Letrozole? Please take part in this .......

Going through breast cancer treatment Hormone therapy
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Hi Silver

I’m struggling on letrozole

A. I’m now on Femara, having been on a generic brand, having read various posts here, can’t say I personally noticed any difference between the brands to be honest. 

B. 2.5mg

C. Side effects Yes: joint and muscle pain, sleeping badly, brain fog, vaginal dryness, hot flushes and my hair has thinned considerably 

D. Since May 2022 after lumpectomy and lymph node removal, chemo and radiotherapy. Prescribed for 10 years

E. I take it at night.

Sorry to sound so negative! I discussed it at length with locum oncologist and will continue to take it but wish I didn’t have to. 

Carmen 

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Hello Ladies,   have already responded to this, but felt I should share this. I have had four different brands of Letrozole since December 2021.  Sun Pharma - for me they are the best no side effects at all: Glenmark - again no side effects.  I asked my doctor to specifically prescribe one of these brands which he did, however, the pharmacy could no longer get them, so they made up the prescription with Accord - the side effects were awful, terrible wrist and hand pain with swollen fingers all of the time, I stopped taking them after two weeks.  Within a day or so my hands and wrists were back to normal.

I spoke with the pharmacy and they advised that I should try another pharmacy in town.  I did and they were so helpful, they had Cipla on the shelf which I decided to try, while they located one of the other two brands, they did and text me to say they were on order for my next prescription.  The Cipla were ok, but I did get mild joint pain, but nothing as bad as when I was on Accord.

I hope this is helpful to others.  We are all different and what suits one can be like poison to another, but my message is, if you find one that suits you keep knocking on the door of your GP and or the pharmacy until you get one that suits you.  We have gone through enough without having issues with the medication that we have to take.

Milly xx

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Please take part as it may help to come up with some answers and help others:

a) Which Brand of Letrozole do you take ie Accord;

    Cipla etc.  **Femara

b)  What strength is Letrozole prescribed?  ** 2.5 mg

c) Side effects Yes or No **YES!!! 

d) How long have you taken Letrozole **Since Feb 2022

e) Particular time of day you take your Letrozole  **Morning

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I’ve been taking Sun Pharmaceutical Letrozole every morning since end of January 2022, 2.5mg and quickly felt more tired than usual.

My left hip weakened and became really painful, to the point that I had to think about how I could get up from bending down - before attempting it.  To the point that over the following few months I had to walk up/down steps/stairs one-by-one!

March 2022 I also began taking Palbociclib 3 weeks out of every 4 weeks and didn’t notice any other side-effects.

By now my side-effects consisted of constant hot flushes - I ordered a neck fan which has saved my life!! - very painful left hip, feeling pretty exhausted at times but have been able to have a nap when needed as I retired on 1st April 2022!

July 2022 my PET scan unexpectedly showed no active cancer cells anywhere in my body and my Oncologist told me I am in remission - something I didn’t expect to hear at all! 

A blessing I didn’t expect to receive but accept it gratefully with thanks.  For now my breast cancer is dormant, but I remain conscious it’s unlikely to always be that way so take each day as it comes.

I continue with the Letrozole and Palbociclib as the combination has worked miracles and for as long as it continues to work.

Here’s why I wanted to post this today … the pain in my hip.  I read here somewhere a while back the suggestion to try taking Letrozole during the evening instead of the morning.

Almost a month ago now I decided to give it a go and I begain taking my Letrozole during the evening.

I genuinely can report today that I no longer have the painful left hip and I am able to walk up/down steps/stairs normally and I just wanted to share this with you all, because there will be somebody out there who will read this, make the change and it will change their lives, as it has mine.

Good luck to you all … stay strong, stay positive, stay hopeful.

Much love

xxJanxx

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Dear Silver

a) Which Brand of Letrozole do you take ie Accord;

    Cipla etc. -

Unfortunately I don’t know the first brand name of Letrozole I was started on in August 21. Around April 22 was put on Accord didn’t think anything about it at the time just noticed packet was a beige colour, then July, August 22 was given, Ciplia then back on Accord last month 09.22. Have now been taking Glenmark for two weeks.

I started taking Letrozole August 2021 - I don’t know the brand I was on at the time which is annoying but at the time I did not know of the term generic and its connotations, I did not have any problems in the initial months other than hot flushes for a few weeks, however everything changed in May this year and I got worse so much so visited GP in August 22 who sent me for bone scan incase I had secondary - bone scan clear.  Around May I noticed problem with my hips and walking and my my knees and ankles as well so much so I was walking down stairs one step at a time and I feel as if I have aged, it was a Dr at work who said about generic medications and my problems could be related to my brand which made sense as I was ok for the first 7 months or so, Glenmark are better but still have joint pain in knees, wrists, itching skin, tiredness and I have noticed a dry cough.  I have been give Sun pharma to try but not tried them as yet. I can say Accord and Ciplia were the worst for me, I have appt with GP this week so will discuss with her.  I cant stop taking the Letrozole as the fear of the cancer returning is unbearable. Take care everyone and thank you for this group it is researching here that has helped me to better understand. x

b)  What strength is Letrozole prescribed? 2.5mg daily

c) Side effects Yes or No - Yes

d) How long have you taken Letrozole - since August 2021

e) Particular time of day you take your Letrozole - mid morning

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This is an excellent survey and will be good for all of us. At any rate I’m in the US and we don’t use generics here. So I’ve been on just straight letrozole for two months along with the ovarian suppression drug of lupron. I am 48 years old and side effects are minimal if not completely unnoticeable. I have some mild muscle soreness and stiffness but nothing that stops me even remotely. No hot flashes although I do get more overheated easier. I take it at night right after I eat my dinner and take it with a good amount of water. At least half a glass. 

There are some things I am doing to help my bone mass and keep me limber but I’ve only just started them so I don’t feel comfortable suggesting anything to anyone yet. In a couple of months though I’ll post what I’m doing if I feel like it makes a difference. I think we could all use the help to make sure we can live our lives comfortably and happily after our diagnosis. 

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A. Accord

B. 2.5mg

C. Yes

D. 2 years

E. Bedtime

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Yes

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I was taking Cipla brand. Now apparently unavailable. I took the brand thst was delivered to me. After five or six weeks I hurt everywhere and suffeted awful side effects Eventually I received Crescent brand. The hot flushes are horrendous but a lot of the pain has decreased.  Still not sleeping well. Now it seems the Crescent brand is in scarce supply. I really do not want to go through all that pain and discomfort again. I was told I have to find  a chemist who has Crescent brand in stock. 

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I use the Accord brand and less side effects than Crest?

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Yes, brand Accord ?

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Thank you for sharing this. 

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I am on Accord too. I get quite a few side effects but now take ibuprofen to reduce these. I do rattle though, as I now take quite a few extra medications to deal with the side effects of the others!

Seagulls

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Thank you for this. 

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Hi all,

I started on Letrozole after my WLI surgery last April . For most of the time I’ve been  on the Sun Pharma version and I’ve had some join pain but nothing unmanageable. As I’ve got some mild/moderate arthritis in my knees and hips  its hard to tell what’s causing the pain!

For the last three cycles I’ve been on Accord. I know my pharmacy and others in my bit of the East Midlands ( Derbyshire) are struggling to get hold of any Letrazole and so are taking whatever they can get.  

I know others here have had good experiences of Accord but it really doesn’t suit me, all the aches and pain are worse and I’ve now got joint pain in my hands which I’ve never had before ( noticeable when I wake up, then easier over the course of the day)  and pain in my right ankle , which I’ve also not had before.   My pharmacist has made a note on my records to get Sun Pharma for me if he can next time, it will be interesting to see what difference, if any that makes.

We’re all so different aren’t we!

Is someone collating this information  to feedback ?  I haven’t logged on for a little while , so I’m not sure who it is thats asking us to take part or why?

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Thank you for your reply. 

I am sorry  that you have new pains due to taking Letrezole. I too have arthritis and like you say any new pain is worrying when you have had cancer. Quality of life suffers too.

I am still waiting for a suitable brand to be found for me locally. Worried I may run out of tablets.

I hope you get some relief from your pains soon.

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I’m late posting this but told all letrozole have same constituents by one pharmacist and yet another one said NO 

I ve tried 8 brands and last two GLENMARK and BRISTOL both have different constituents in fact I’ve also had ACCORD , DR REDDYS, CIPLA, SUNPHARMA , AURAMOX and CRESCENT 

GLENMARK is my best 

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I’m late posting this but told all letrozole have same constituents by one pharmacist and yet another one said NO 

I ve tried 8 brands and last two GLENMARK and BRISTOL both have different constituents in fact I’ve also had ACCORD , DR REDDYS, CIPLA, SUNPHARMA , AURAMOX and CRESCENT 

GLENMARK is my best take in late morning 

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Thank you for your reply.  

I was on Cipla but apparently those are now unavailable. 

Currently taking Crescent brand. 

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The pharmacists are both right and wrong!  What is IN the tablet is the same, it’s what’s OUTSIDE the tablet is the problem.

Each company coats the tablet with it’s own  proprietary coating  which is why changing manufacturer causes such problems 

 I got changed from ACCORD to SUN some months ago, and boy did I notice the ramped up side effects. Now my prescription states ACCORD only. 

Hope you can keep with the one that suits you.