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

Great survey. My answers as below.

A. Sun Pharmaceutical. First packet, so will see if I get the same ones when I get repeat.
B. 2.5mg
C. Side effects: Hot flushes, bad for first two weeks. But they seem to have calmed down now a bit. Joint aches, wrists, ankles, hips. Mainly at night, but sometimes during the day. Walking and exercise help a bit. Hope to go back to the gym, so will see if that helps. Hair dresser said my hair is very fine now, so hope it does not thin too much. Some stomach cramps, but not sure if it is the pills or IBS symptoms.
D. On third week now.
E. Find taking them at night around 9pm, seems to work well. Hot flushes for first hour, then ok. Aching at night though. But would rather have that, than during the day as much.

Best of luck with the survey.

Hi Silver 6
I am on Accord brand letrozole 2.5 mg which I take at night. I started taking it in April 2020 and my oncologist recommended taking it for another 7 1/2 years. I have mild hot flashes, joint (mainly knee) pain and mild muscle pain. I take one tylenol only after a lot of physical activity and my water bottle comes in handy as well. Hope this helps.

Yes 2.5mg per day. Crescent had no side effects except haur thinning. But pharmacist can’t source it. Sun for 2 weeks and pain in joints, spine, arms and hands. Beginning 2 weeks Glenmark tomorrow

My brand was changed to Amarox for the second packet. I have found these better than the Sun pharma ones. Aching is minimal this time and only the odd hot flush which is great, I still take them around 9pm, which I find is still ok. Also taking Calcichew calcium tablets, which are definitely making my nails stay longer. They were always breaking, so a win there.

My letrozole is Sun. I started the 2nd pack this week.
Slightly achy knees for 1st 2 weeks. A little more hair wrapped around the vacuum filter and in the shower plug trap but not noticeable to others. I’m starting chemo in next couple of weeks so that will be irrelevant. I have to stop letrozole then too.
I take them 8 to 9pm with a half mug of water followed by a mug of mint tea.

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Hi I was interested in your post because I have been on Letrazole and Pal since July 20 No-one told me that if I had osteoporosis I should take Vitamin D and calcium extra to my good diet including skimmed milk which has more calcium than semi skimmed - apparently. I had one fracture in the pelvis and then a non trauma fracture of the spine, very painful and life changing, then another pelvis fracture carrying some shopping. Now on the vit d and calcium tablets and physio at local hospice. I am 77 and my advice is to ask questions of your nurse or oncologist ( I haven’t seen mine for 2 half years) if you are worried.
Apart from that I am still living a normal - ish life apart from the country walks and country dancing I enjoyed in another life. I have a lot of pain in the mornings and feel better after eating , hardly any flushes but need to go to the hairdressers far more often as my hair is straight and flat now. I have accord Letrazole by the way and luckily no others offered so far and take them with breakfast or I forget to take them.
Good luck to all but at least give them a go… Almost forgot, I now have four weekly injections of bone strenghtener, but why wasn’t I offered that earlier…

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The brand of Letrozole I take is Accord 2.5 mgs
I suffer hot flushes, joint pains ( knees and hips particularly) shoulder and neck pains.
I have been taking it for 8 months
I take it early evening.
I would like to know if there is a time of day to take Letrozole which is more benificial.

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I am taking the same brand (for almost 4 years) and have similar side effects. Since I am her2 I will be taking it for another 6. Hope it does the job!

To add, I take my letrozole at night (advised by the nurse).

a) started on Sun then Accord as Sun unavailable
b) 2.5mg
c) yes insomnia, stress incontinence, dry vagina
d) 6 weeks
e) morning 6 days a week I give my body Sunday off.
Tulip x

Hi here are my answers

a) Cipla
b) 2.5mg
c) Not sure if this is a side effect but I have had chronic diarrhea on and off for several months
d) 11 months
e) evening after eating

Hi, This sounds similar to my experience too.
I’m 64. I had a lumpectomy & sentinal node removal in July 22. highly estrogen positive. Additional clearance for the margins in early Sep22 & everything was clear. 3 weeks Radiotheapy. Started Lettrazole 2.5 mg in September22 Accord brand. Zoledronic acid infusion every 6 months.
I started getting wicked night sweats during my menopause (7-8 times a night) and eventually gave in and started HRT patches (Evorel Conti). Had to go cold turkey when diagonosed. Have been having flushes & sweats ever since, 2-4 times daily & up to 6-7 nightly. I can’t stand it. GP has offered Fluxotine or Clonadine, has anyone had any excperience taking these for fthe sweats? I’m very interested in the new drug Fezolinetant and I’ll stump up to get it proivayely if it will work…to answer the questions

a. Accord, although I did have 2 packs of Amarox & didn’t get on well with them

b. 2.5mg

c. Tiredness (Could be lackof sleep), some joint pain in shoulders, wrists, thumbs & fingers, loose stools (maybe not related)

d. Since Sep22

e. In the morning. My nurse suggested I change from taking it after dinner when the sweats got bad, but I’m not sure it made a difference really

I really need some ideas to get through the night any suggestions (I’ve been warned off anything phyto-estrogenic by my oncologist) I do have sage tea daily
Thanks for any suggestions!

Hi, I have had a lumpectomy and lymph nodes removed 21st December 23
A, my first packet was sun pharmacy, followed by two accord
B, 2.5 mg
C, at first I felt really nauseous for the first month, I’m having problems sleeping, brain fog, dry itching skin and my hair is really thinning
D, I have been taking Letrozole since 8th November 2023
E, I take just before bedtime

I am on Letrozole 2.5 1x dailey. I think manufacturer is Brichardson. I’ve been taking it since last October. Since then, my T score in my left hip has gone into the osteoporosis stage from osteopenia. My oncologist wants to give me an infusion like Prolia, but my general dentist won’t sign off on it so now I’m going to a periodontist next week hoping to get clearance. I have 5 implants and supposedly the infusion medication causes some bone issues in the jaw. My other side effects have been weight gain and hair loss. I was able to contain the weight gain with a diet. My oncologist recommended me to see a dermatologist for the hair loss. He prescribed Minoxidil. Do you see where I’m going with this? I’m now taking further meds to offset the side effects from Letrozole. My oncologist did suggest trying a different med. I’m afraid to because my blood work has been great (no cancer). I’m interested in others thoughts. Thank you

a) Which Brand of Letrozole do you take
Sandoz (in Australia)

b) What strength is Letrozole prescribed?

c) Side effects Yes or No
Yes. Aching ankles and hands for first 6 mths
Vaginal dryness and soreness - continued
UTIs more often
Weight gain

d) How long have you taken Letrozole
4 years

e) Particular time of day you take your Letrozole
Bedtime

Hi. On letrozole since finishing radiotherapy in feb 21. I have had a lot of brands and was actually crippled with bone pain from head to foot, over a year ago i got Cipla and the difference was night and day. However i cant get it now pharmacy have tried. Ive had accord which is the best of a very bad lot. Still have sore shoulders arms wrists hands feet ankles znd hip and small of my back. Last week i was given zamorax. Oh dear me i went from being fine to a bubbling wreck i couldnt lift my arms my ankles and feet bones were burning and my hands. I at oresent need my hands and shoulders because unfortunately the biophosphonates ibandronic acid i was taking damaged my normally string bones rather than strengthening them against what the letrozole does. I got necrossus if the jaw. And i had such painful legs and hips. Then suddenly out of the blue my femur snapped in two. I had to go for surgery to have it repaired nailed and screwed. They told me next morning my other keg was going the same way totally due to biphosphonates so they had to put a rod in my other femur. I had two broken legs. Its tajen me 8 month to get back to where i am at just now, and rely on my hands to oush me up and my shoulders to haul me about the letrizole is making this so painful.

I didnt take the amorax fir a day. My family actually took them back and got me accord which i am taking now. I was on the verge of stopping altogether, but should God soare me i am on them until 2030.
I had deca scan and no sign of osteoporosis or ostopenia .
Thats the letrozole story.
Taken 2.5 accord at 9resent in morning.

Just to add i took a reaction to doxatxel and picitaxel and its damaged my lungs left me with pulminory fibrosis.
Therefore i will warch what i take now.
No biphosphonates, and only certain letrozole.
Im on meds for life now because of chemo.
I know it does its job . And can cause other health problems.

Good health and best wishes to you all

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Oh @granC what a tale of woe. No-one deserves such bad side effects. I do hope you get some better luck soon.

Hi
A) Accord, since September 23
B) 2.5
C) 6 months
D) Morning around 7am along with other medications
Side effects disturbed sleep patterns but hit and miss, feel like a cripple in the morning coming down stairs but better after movement. Hips soon stiffen after sitting, knees fine, ankles hurt initially but settled although the side of my left foot can be painful at times. Had small amounts of pain in left wrist.
DX scan showed osteoarthritis in my spine. Meeting with oncologist to discuss Bisphosphates after dental appointment. Taking calcium tablets daily.
Mood good and never felt better in myself.
Hope this helps x

Hi lovely Ladies. Hope you are all getting on ok with the Letrozole pills. I have been on these now for 5 months.

A. Have been given Sun Pharma, Accord and Amarox twice. Seems to change every time. Found with Accord I had the most side effects. Aching in shoulders and hips, hot flushes night and day, hair thinning. Amarox has been ok lately. Still get the hot flushes, especially during the day but only last a few minutes. Not sure if pills causing the aching, as I have b12 deficiency which causes aches in joints too.

B. 2.5mg still.

C. 5 months now.

D. Still take at about 9pm every evening. Hot flushes start just after taking them, but subside after about 1/2 hour. Not too bad at night now which is good.

I gave up on Letrozole Friday.

I can’t exercise without becoming so dizzy 1 breath away from passing out with BP of 97/47.

Letrozole Aromatase Inhibitor 2.4 mg By Prescriber - Dr. —, — Oncology — , TN (began 2/20/2024 to ended 4/5/2024)

  1. Hot flushes and sweating
  2. Feeling very tired / exhaustion
  3. Loss of sleep / night sweating / awakening to urinate
    4, Losing appetite
  4. Hair loss
  5. Low mood
  6. Muscle weakness, pain or swelling in the joints or tendons in your or legs, shoulders, and chest
  7. Chills / Sweats alternating
  8. Unstable angina, pain, wildly fluctuating blood pressure over 200/100 to below 87/47 each day M, W, F.
  9. Sunday even without exercise BP spiked to 198/102 at 9:38 AM with cardio meds including Clonidine add on went to 88/62 standing BP at 10:42 AM.
    As a result, unfortunately too ill to attend Church Service.
    Hoping to be able to complete Physical Therapy for a full session of 1 hour next Monday 8, Wednesday 10, Friday 12.
    April Monday 1, Wednesday 3, and Friday 5 only got in 45 min. of exercise until BP diastolic dipped below 50 and was too dizzy to continue.

UPDATE:

Was able to complete Physical Therapy Monday.
Took mononitrate after exercise.
Took regular heart medication approximately 2 hours beforehand.
Relieved this is over.
I will not look back.
Looking forward in prayer that cancer remains gone.
I will know the last week in July when I get another 3D mammogram, sonogram, and MRI if the cancer remains gone.
Hoping the neuropathy in legs goes away caused by Letrozole and the lipids start going down.
Upshot:
Slept somewhat better last night.
Should get my dopamine booster pills soon.
Letrozole kills dopamine levels.
Hope mine level does come back.
Without dopamine we head for Parkinson’s and dementia.

Pray for me ladies as I will pray for you also for complete healing.

~ MabelLean