Dizziness with Letrozole

Hi Maz9112003

I was on Letrozole for a year though it didn't do anything for me and my cancer.  I had no side effects that I can remember.  However dizziness is one of the side effects.  Sometimes different brands can give worse side effects.  Have you been on the same one since you started?  A different brand might also help with your arthritis.  I think Accord or Teva are the best in generics although the absolute best is the one made directly from the developer of Letrozole (Femara) but it costs more.  If you can make the case to your GP then going the Femara route might be best.  This original is more expensive.  Lay it on thick and tell them that you are not coping with the side effects of a generic copy.

Best of luck

Hi Chloecat

Can I just intervene here.  Letrozole is primarily used to prevent re-currence of BC in ER positive women.  It is not used primarily to irradicate lesions.  It worries me that you have made a post saying “letrozole has done nothing for me or my cancer” without the full background of your decision to step away from the conventional route. This is a public forum, and anyone could pick up your quote and start questioning the effectiveness of Letrozole.  [edited by admin]

Maz

Definitely I have experienced arthritis but no dizziness, worthwhile checking with your GP.  Your GP is able to prescribe femara, and cannot legally not prescribe.  It is a tricky drug, but has proven to have marvellous results.  Good luck.  

Dizziness is a listed side effect of letrozole that was picked up in the original clinical trials for Femara.  Changing the generic is unlikely to make any difference because it’s the drug, not the excipients, causing the dizziness.

Lavendergirl I’m not sure what you mean when you say the GP cannot legally not prescribe.  The GP has many obligations but to prescribe a brand costing the NHS £90 a pack when there is a 79p generic alternative is not one of them. 

Hi Maz,

I'm on Letrozole, when I first started I had a couple of awful sessions of everything spinning around, very scary. Even now I have times when I feel dizzy and unsteady, it comes and goes, I've fallen quite a few times. Things which help are no alcohol, no salt and no caffeine, lots of fluids, lots of rest and quietness. I buy all my shoes with an eye to gripping the floor.

I also have degenerative disc disease(arthritis in spine) and I take natural inflammatory stuff from the health food shop which  does help with the pain.

See your doctor about the dizziness because there is some medication I think its called Betahistine it does something to your middle ear to give you balance like a teenager ha ha, Anyway worth asking for 

https://patient.info/medicine/betahistine-tablets-serc

Hi Lavendergirl

I was prescribed Anastrozole first which stopped working at 4 years.  Then onto Letrozole for 1 year which did not work - they said.  Now on Exemestane and Everolimus.  This is in a neo-adjuvant setting.  [edited by admin]

Morning  

There has been a few ladies here who have been given Letrozole to reduce tumour size prior to surgery (neoadjuvant) due to not having chemo either because of serious health issues or avoiding chemo by choice for quality of life. It takes much longer to achieve than with chemo so is a long term route but is used.

One which springs to mind was Heather aged 70 from a couple of years back - This is from one of her messages...

"Hello everyone I have now been on letrozole for nearly 14 months prior to surgery in order to downsize my 48 mm tumour. In February of this year another mammogram gave the size as 33 mm so has reduced in size by 15 mm. I have an oncology appointment next Wednesday to see the state of play and hopefully it may have shrunk a little further. My oncologist did tell me at the beginning that I could be on letrozole for 18 months as  he wants the tumour at 2cms for a lumpectomy"

Hope this helps :)   G n' J

Hi Argymargy.

The NHS has an agreed national formulary. Femara is on the national formulary.  Local CCG’s will request GP’s to prescribe alternative brands where seen that they are equally as effective, for less cost and this is known as a local formulary, there are thousands of examples of this.  Most GP’s will abide by the request from CCG’s  but they are not compelled to do so.  I don’t believe I am wrong, but do let me know if I am.

Sorry I probably sounded in-appropriately cross.  I accept letrozole is used to shrink tumours as well as prevention.  The nice guidelines have     a well researched pathway for primary breast cancer, which whilst I accept we aren’t compelled to follow, if you do choose to do so you can be assured it is the most clinically effective.

Now not following the NICE guidelines really is NOT cost effective for the NHS and puts a strain on budgets.

My point is Letrozole has proven to be super effective for prevention for  many of us, after surgical removal of the primary breast cancer.

Hello

Can I remind everyone to please stay on topic and address the situation or question that the original poster has written.

Please focus on friendly and helpful discussions.

If you have any worries or concerns, please contact the moderator account via private message or email us at community@macmillan.org.uk.

Thank you,

Jess

Hi  

Have you always had the same brand of Letrozole ? as a change may help (if only a little)

J had a spell of what she thought was Vertigo: Room spinning while laying down, having to hang into the walls to walk straight after about a year on Letrozole but it turned out to be Labyrinthitis - She hoped it would go away but after 2 weeks she gave in and saw her GP who carried out the Epley manouevere and she had no futher problems with it, so that may be worth checking out.

The bone / joint aches were a different kettle of fish and needed Meloxicam (a non-steroidal anti inflammatory) and Amytriptiline to help ease those but the memory loss / brain fog which is quite common can really drive you to despair at times :(

There are similar tablets to Letrozole - Anastrozole and Exemestane which you could ask your GP about to see if changing over to one of those would help ?

Unfortunately a lot of these symptoms (baggage) are down to the lack of Oestrogen so all will have similar side effects :(

J has not long finished her 5 year letrozole sentence and was glad to see the back of them :)

Hope your GP can help you, Take care, G n' J

Thanks everyone for your advice I will see my GP and see if they can help me.