I have been on Anastrozole for a year. My hip, knees, ankles and hands ache all time. Has anyone found the best over the counter creams and pills to help.
I was on Anastrozole for 20 months and last month I had a total meltdown and realised that a lot of my symptoms were Anastrozole related.
Aching ankles, knees, hips and fingers. Fatigue. Dry eyes. Dry ears. Low mood. Irritability. I stopped taking them and contacted my oncologist.
In the three weeks I didn’t take them my ankle stiffness went away and my dry eyes improved.
He’s now put me on Exemstane and I’ve been taking them for 2 weeks.
All of the same symptoms are back. Different tablet same sh*t!
I’m exhausted from it all and seriously considering stopping them. I just don’t see the point. I’m 54 and feel 94!
4 Likes
Hi @louby_lou69
I sympathize - I had all the joint pains with Anastrozole and ended up stopping it - but then I had a very slow growing BC that rarely spreads and even then I feel a bit unsure about having stopped it at times. Next week I’m having an appointment with a BCN to discuss every option - and to try to properly sort it out in my head .I have a huge list of questions to ask. Perhaps you could do the same ?
@victoria2 I’m no longer on Anastrozole but I have joint pains and have started taking a Glucosamine / Chondroitin with Vitamin C supplement plus a Vitamin D and a Turmeric as well . I have those 3 altogether with my evening meal as your body needs black pepper as well to be able to utilize the turmeric . I’ve been on it about a month and it’s starting to make a difference - I’m not needing as much ibuprofen or Paracetamol.
I have also taken Magnesium for years to help prevent migraines but that can help with joint pain and also with fatigue.
All the best to you both
Joanne. X
3 Likes
Thank you @JoanneN all the supplements including Magnesium are things I’ve read about. Having Letrozole and seen similar symptoms being mentioned. The only problem for me is the Glucosamine / Chondroitin as they are made shellfish and the last time I tried them I had the most horrible upset stomach, which is listed as a common side effect, not sure if it’s the shellfish which I don’t eat, never been told allergic to it.
Will try the other supplements and see what happens, then add the above and see if it helps or I have bad stomach again.
1 Like
I must admit I didn’t know that they were derived from shellfish - the assistant in Holland and Barratt might have asked me if was sensitive to it but I’m not and I can’t remember .
I also know someone who has been drinking Turmeric and Ginger shots ( not sure which ) and has noticed a difference just with those .
Joanne
1 Like
Thank you so much for the great information. I really appreciate it…
I found out if I keep walking daily and watch my diet, a lot of the symptoms seem less. I do take Magnesium. My Doctor told me big mistake to stop, so I kept going. I’ll be finally finished April 18th of this next year. Advil helps me when my bones and muscles ache too, but I don’t take it every week. Stay away from sugar and for me high glycemic carbs too. At least I see a difference. I’m a retire nurse and it’s all about risks vs gains. I feel more unsure about cancer returning than the other symptoms, but I know for some the side effects are daunting. Try to stay positive as much as possible and keep your oncologist informed. Take care and I wish you well.
Thank you so much. I will try that as well. And I am walking about 4,000 steps over a few times every day and doing exercise in pool and it helps. I do take advil when it really hurts and wear compression socks on lower legs at night and it helps. I’m at 1 year and it is better… not great but better.
I take the Tumeric and ginger shots from the Tumeric Company. Friends of mine take the Tumeric with Vitamin D and vitamin C shots and say that their back pain and pain from plantar fascia has reduced considerably. They aren’t cheap though and the Tumeric and ginger one I use (ginger for dodgy digestion) are an acquired taste. Might be worth a go as cheap Tumeric supplements aren’t worth the bother as you need live Tumeric with curcumin for it to be effective.
3 Likes
I’ve made an anti inflammatory mix. all blended and frozen into cake moulds, taken out of freezer and add hot water. I’ve screenshot the recipe below.
I used to do hot water lemon ginger and honey for ages from fresh but freezing a batch is mo much easier with the added bonus ingredients. I found the lemons would go off quickly.
I have had very high dose of Vitamin D 50,000iu weekly as I felt so tired I asked my team to check my bloods and I was borderline deficient. I’m now on monthly 10,000iu which is more normal dose. I feel less tired and fatigued. I mentioned to the. I regularly took Vitamin D ad regularly where SPF so don’t get it from outside sunlight but they told me to stop all supplements for my chemotherapy. They probably should have prescribed me VitaminD from the beginning to prevent the deficiency in the first place.
2 Likes
To be fair from what I’ve heard the vast majority of us Brits are deficient in Vitamin D or borderline . Our climate / lack of Winter sunshine/ changes in diet / less time spent outdoors are all factors so you’re in good company . Some Doctors think it’s a massively under diagnosed issue - however obviously for BC it’s got to be more important to keep our levels up.
I like your recipe
Joanne. X
1 Like
I finished chemo a year ago and was on Anastrazole then for 7 months, i felt awful, tired, in constant pain, sluggish, irritable, i could go on and on. I was changed to Exemestane, different tablet but i feel worse than ever past 6 months, my joints are so weak and painful that 3 months ago my knees gave way going upstairs and i fell backwards breaking my back in 3 places. Was weeks in hospital and needed major spinal surgery, i am lucky i can walk again i was told. Have tried to see or even speak to oncologist but have had 3 appointments cancelled at short notice, was due to go in 4 days but cancelled again yesterday. I can’t carry on feeling so bad and low so will try some of the suggestions on here. Already on Vitamin D as in Adcal tablets, have tried cbd gummies but no change. Im 58 and have no life at the moment and tempted to stop the Exemestane but terrified the cancer will return.
2 Likes
So sorry to hear this. I’m 54 and due on Letrozole in the New Year. Like you I want to live and not have recurrence.
The fact so many are taking about pain and joint problems just to mention a few side effects, you’d think the oncologist would be on top of it. I had read taking Magnesium Citrate or glycinate can help. With Vitamin D and calcium. But I’m not sure you get it prescribed.
I’m so sorry you’re in this situation and I do hope you start to feel better - those sound like quite extreme side effects to me. If you can’t speak to an Oncologist can you reach out to your BCN as they might be able to go over the options with you - and the risk /benefit ratio . Unfortunately there are lots of choices when it comes to BC and most of them are not easy .
They may also be able to contact the Oncologist on your behalf and help to get you an urgent appointment .
You could also talk it through with the Nurses on the helpline here .
Sending love
Joanne x
1 Like
Hi
Not a reply really, just pinning this post/thread for future reference.
Thank you for the recipe ! x
1 Like
Ive been taking anastrozole for almost 5 years and due to change to tamoxifen in December. The first 8 months I was fine then suddenly started to feel generally unwell, including jojnt pain and trigger finger. I discovered this forum around that time, and some people mentioned that it could be down to the brand of anastrazole. To be honest i hadn’t really clicked that the brand had changed (happened in lockdown year). My usual pharmacy were pretty unhelpful so i changed to another one who are very understanding and avoid giving me the one that causes problems. The brand was Accord, always makes my joints ache and bone pain all down my leg. I’ve tried it once since when supplies were difficult to get and the pain returned. I keep notes of any side effects if i get a different brand, but on the whole ok if i avoid Accord. Teva, Key and Sky seem to suit me. I hope this helps, as the forum helped me.
1 Like
I have been on Anastrozole (Arimidex) for 2 years now and it’s really messed me up.
Have issues with pain in knees…had to get them injected, ankles ache and lower legs.
Some people say it’s not worth it and doesn’t help for estrogen related breast cancer to keep from coming back.
I can deal with it if it will keep cancer away but it is really messing up my life. You alls thoughts
Keep taking it or stop.
Oh that’s a hard thing to ask @victoria2 . I always try to help but wouldn’t ever tell anyone they had to continue or that they should stop . If you are seriously considering stopping I would recommend speaking to your team about it if you haven’t already - going through with them what they think your risk of recurrence is / the Predict score which means what your chances of survival are at 5 , 10 and 15 years and how much that improves by taking an AI .
I did stop but although my tumour was strongly ER+ it was very small and tubular which is a kind that rarely spreads and my surgeon said from the off that if I didn’t get on with it it would be reasonable to stop. I have other health conditions that I was worried would get worse with being on an AI and I prioritized those instead but my situation is different to that of most people and even then I sometimes worry that I’ve not done the right thing. If my cancer were different or had spread etc I would definitely have tried to keep taking it and explored things like different brands or tried Exemestane which my friend has been on for two years now after not being able to tolerate Letrozole. .
I have a family history of osteoporosis . Have you had a Dexa scan to check your bone density ? Mine showed secondary osteoporosis and these things were a factor in me stopping it.
It sounds like you’re in the US ? I’m wondering if there might be consequences for your health insurance if you stop it . Recently when getting travel insurance I was asked if had stopped any treatment related to my cancer and I was able to say that I had but that my Consultant was ok with it. I think you need to get as much information as you can before you take any action to stop .
Sorry that you’re struggling with your joints - that was also my main issue . I did find Yoga and Diclofenac gel helpful and stick on heat pads for my shoulders when it was cold though it sounds like things have gone past that for you . Xx
1 Like