Hi all, looking for some feedback on people’s experience with different brands of exemestane and side effects.
After suffering terribly on letrozole I was switched to exemestane, and to my surprise got on really well with it for about 9 months. Then suddenly I developed terrible muscle pains and weakness/tiredness. After 4 months of pain I took a 4 week break and recovered, so thought perhaps the reset would have helped and started taking the tablets again, but after 3 weeks am in pain. I am aware that at some point the brand I was given changed, but I didn’t take note of the exact time or brands as I didn’t appreciate the significance. I now believe this may be the problem, the difficulty being that I don’t know what brand I had originally that I clearly got on with. The most recent ones that have caused pains is Morningside, and I have today been given Kent Pharma, but I don’t think these are the original ones.
So my question to you is, can you name brands you have gotten on with, and those you haven’t? (I know everyone is different, but it would be very interesting to see if there are any patterns). Many thanks
When you find one that is ok for you you can ask your GP to put on that brand down on your repeat prescription - otherwise they just give you is most readily available. . I’m thinking that if you contact the Chemist that supplied the prescription of the one you were ok with they may have a record or know which brand they gave you. Hope you get some relief from this. Xx
Thanks, I was sure the pharmacy would have that information, but I asked and they said not… Seems odd, what if there was a contamination issue or something? So I just need to figure out which one it was, and then will try and source it like you say.
Yes I would have thought they would keep records of what they have had in stock at that time even if they hadn’t recorded the brand when they dispensed it - and yes you’re right I thought there would be some traceability . If you find it again take a picture - you could always take your prescription with you and go round a few chemists and ask if they could show you the packet ? Xx
Hi, I take the Aromasin brand of Exemestane. I do get some side effects. Mainly hot flushes & brain fog. Joint aches aren’t too bad. Hope you find one that is bearable xx
Hi moremi23
I also started on Letrozole and switched to exemestane. After a very up and down time to start with, I realised I was better with the Aromasin exemestane as opposed to other brands. I asked the pharmacist if I could have that each time but was told no as it’s an expensive one. My GP has helpfully written prescriptions specifically for Aromasin ever since. I have still had periods of awful muscle and joint pain, then feel fine at other times, but I feel it’s the best of the bunch for me.
I tweak my supplements on a regular basis and currently feel well enough to be able to start back at the gym after several years. I find taking a vegan Omega-3 supplement has been very helpful for the aches and the brain fog. I’ve also restarted the Calci-D which I was prescribed. I came off it as the pains got worse taking it. I went back on with a half dose to being with and built it up.
I’m sort of resigned to thinking I’ll have aches and respite on a rolling programme! But tweaking the supplements has definitely worked for me.
Let us know how you get on.
xx
Thanks, I’ve never had Aromasin and I’m not sure if the NHS will allow it, but I can always ask. I was told to take Turmeric supplements but I’m not sure they did anything. I’ll look into the ones you mention though, I guess it’s trial and error, thanks for the suggestions.
Thanks, not sure if I’m able to request that on account of price, but it can’t hurt to ask 
Yes, I get Aromasin on the NHS. 
XX
Hi! Oh my gosh I’ve just changed to morningside and knee pain got so bad I stopped after 4 days. The pharmacist couldn’t get Glenmark for me which is what I started with.
How have you been with this? I’ve just switched as it’s the only way I can get consistency
I didn’t believe the brand made a difference, until I got two months worth of a different brand (Rivopharm) and had the most horrendous back ache. I spoke to my oncologist and he asked if anything at all had changed in my routine. Nothing bad changed except that. I switched back to Glenmark and the back ache disappeared and have tried to stay on that particular one since and the back ache hasn’t returned. Although sometimes the pharmacy struggles as they just give whatever is available at the time.
For a few months early last year every prescription I was issued was a different brand and I was just in pain. Then I was given Glenmark and for the last 8 months or so i have been given that each time and the awful side effects are gone.
So Glenmark has been a winner for me.
The trouble is I have been given that by chance - I have no way of knowing each month what will be in that prescription bag…But I believe now more than ever that the brand does make a difference.
Kaz-4 did you switch pharmacy or medication?
Yes glenmark for me was fantastic, took it for 2 months , but again as it’s part of the generic group of Exemestane there’s no way of getting the pharmacy to order it right? So then I took morningside which was awful, couldn’t get glenmark again, so then changed pharmacy to boots and asked the gp to write me the branded which is Aromasin! No idea how I’ll get on with this! But at least it won’t keep changing now hopefully. Hope that makes sense! So nice to hear this as I thought I was going crazy (most people think i am now haha)
I started with Letrozole in May but found I had painful fluid retention in my legs, especially at night and could nt sleep. I did have aches and pains too but at 75 you just expect that!
No one else on these forums have mentioned fluid retention previously so that was good to hear I was nt alone.
My consultant gave me a 6 week break and I asked to change to an alternative after that. I have started Exemestane now, only been on it a month, but I am still experiencing swelling in my lower legs especially at night. It’s difficult trying to raise your legs on something all night.
I guess the previous hormone is still in my body as I think it takes 3 months to go.
It’s reassuring that you mention Glenmark as I have just started this packet, the previous one was Accord.
We are all so individual so I think you just have to try anything to make life a little easier. Good luck everyone x
I also recently switched to Exemestane. Does anyone else have severe constipation?
Hi Jeannej
Yes I do but I put it down to all the other medication I m on too.
I take Lactolose as prescribed but you can buy it over the counter.
Did you have swollen legs at all on Letrozole?
Hi,
I didn’t have any swollen legs on Letrozole. I had hot flashes which were tolerable. The joint pain was too much. I spent months getting xrays, MRI’s and going to multiple Drs and PT, only to find it was all from Letrozole. I couldn’t sit cross legged or too long from knee pain. It’s all gone and so far so good with Exemestane.
Since joint pains are a known side effect of the medication i find it shocking that the medical professionals put you though all those extra tests and didn’t just think to try changing your meds!
It often feels like we have to be experts ourselves and tell them what needs to happen.