Morning,

I put a note on my digitally ordered repeat prescription asking for Accord brand and then phoned GP. She said me doing that was all that could be done at their end.

When I collected my meds it was the Accord brand but it wasn't the normal chap in the chemist so I didn't get to have the conversation.... I'll see what happens this next time x

Take care x

Hi Milos Mum,

I am delighted to hear that you managed to get the Accord brand this time and, hope that you can continue to get it. It would still be worth having a chat with the Pharmacist to ensure that a note is added to your files, indicating that this always needs to be done.

Kind regards,

Jolamine xx

Hello,

I have been on Letrozole for two years and have the same joint pains and aches as so many people report.  I am thinking of taking a Letrozole,holiday around my son's wedding.  I'd be interested to hear from anyone who has taken a holiday and to know how long for and how long before symptoms improved...if they did. 
 

Shermalt

Hi, 

I posted in April 2017 about this , it may help you. Briefly at the end of my tether I just stopped and within a a week I felt so much better. A locum consultant just left it at that, but 5 months later a new consultant put me on Aromasin, also called Exemestane and the side effects are nothing like as bad. I still take it so that says something. I think it was quite new then. 

you don't have to suffer in silence, ask for a change and push for it. We are all different and affected in different ways so a different medication may well suit you better. I have had 4 different meds and letrozole was by far the worst, I am hoping to stop altogether next year. 
good luck, enjoy the wedding.

Hello Snowdrops and Jolamine,

Thank you both for your replies.  It really does help to share experiences.  I have been in touch with my oncologist and will see what he says.  I have slight osteoporosis now and am really keen to keep that in check so want to do something about Letrozole.  I take a lot of exercise and do specific ones set by the a physio friend every day but I don't think it is making much difference, to be honest.  I wake up very stiff in the mornings and have to work hard to get everything moving! 

Shermalt 
 

Hi Shermalt.

I also take Adcal on prescription. It's a calcium and vitamin D supplement and was prescribed as soon as chemotherapy and radiotherapy treatment ended. This could help with osteoporosis.

good luck. 

What side affects do you get when coming off Letrozole?.  I have been told it is time to stop taking it.   Quite truthfully, it scares me in case the cancer comes back.   Arianna.

Hello Shermelt,

Your symptoms might be something else entirely.  Obviously I don't know what age you are, but probably need to be checked for any form of arthritis etc.   I actually have similar symptoms to what you describe, and I have fibromyalgia, which is a chronic condition and causes pain in the muscles and stiffness in the morning and after resting etc.  There is a lot more to it.   It would be a good idea to consult a doctor and will possibly be referred to a rheumatologist, for a blood test etc.

Arianne

Hi Arianne,

A very warm welcom to our forum.

I took Tamoxifen for one year, following a lumpectomy. The following year I found a lump in the same breast and had a double mastectomy. Following this, I took Letrozole for six and a half years. I stopped taking this in July 2017. Once we have had cancer, we all have to learn to live with the fear of recurrence. I can honestly say that although I had several side-effects when taking these drugs, I had no problems coming off them. In fact, apart from the slightly increased fear of it coming back, it was a relief to stop taking them. 

My moods and my tiredness improved when I stopped, although I still get joint pains throughout my body and still have sweats and nausea. I agree that it is impossible to decide whether or not my arthritis might have been a problem irrespective of any treatment,  I am just glad to still be here 13 years on and leading a busy and fulfilling life.

Please keep in touch and let us know how you fare. We are always here for you.

Kind regards,

Jolamine xx