so much pain now on arimidex what next?

Been to my GP today, had to take the day off work and i only work 2 a wk now. Feel exhausted. Not had a good nights sleep for over a year mostly with hot flushes. Now aching all over. We think it may be the arimidex so am coming off it for a few days to see if things improve.

My surgeon offered me this option a few wks ago but things seemed to get better pain wise, now taking pain killers.

Worried that if I come of arimidex perminently, what then? Don’t like the sound of tamoxifen, and taking nothing could be disasterous. Feeling tearful too but think this is prob mostly tiredness.

Does anyone know if there is a link with arimidex, pain and alcohol. Not been drinking this wk, but was the week before the pain returned. GP didn’t think there was a conection.

Irene

Irene

There is definitely a risk of joint pain with Arimidex. I’ve been on it for 7 months and started to get pains in some finger joints and I’ve met ladies who cannot start the day without paracetamol.

There ARE other aromatose inhibitors so it will be worth asking your oncologist if you can try something else as I know people on this site have mentioned this before. Might be worthwhile Googling a bit …

Hope you feel better soon and that they can give you a painless alternative - we don’t need all this cr*p do we?

D

Hi Irene,

I’ve just changed from tamoxifen to arimidex and just like you am aching all over and am so tired all of the time - getting out of bed in the morning is a nightmare - I’m like an old woman of 90! Can’t really move until have had a hot shower. Pain worse in hands and feet, but also in hips, shoulders, neck, back. Hands sometimes feel as if they are burning up inside. Changed from tamoxifen because of huge weight gain (2stone in a year!), but am beginning to wonder if I’d have been better staying on it. Hot flushes are also every bit as bad with arimidex as they were with tamoxifen. Just fed up with the whole business, when will we ever begin to feel human again? Sorry to moan so much, but at least we’re not alone in all of this.

Can’t answer your question about alcohol and arimidex, but I like a glass of red wine with my dinner each night - maybe should try not having any for a while to see if it makes things better. But, hey, there aren’t many pleasures left in life are there?

Best of luck, let me know how you get on if you leave it off for a while.

Jean xx

Hello Ladies

I have been on Arimidex for 15 months now and like you am starting to suffer from joint pain especially first thing in the morning.I took Tamoxifen for six years when first dx with bc and had no problems at all with pain I have spoken to the Oncologist today about taking Glucosamine tablets and he says that it will be ok so I am hoping that they will help.

Best wishes

Barbara

Barbara

Glad you asked about Glucosamine - that was going to be my next question in January when I see my oncologist, you have spared him!

D

My oncologist recommended glucosamine when I asked him about joint pain from Arimidex. I have only started taking it this week so it is a bit too soon to know whether it works.

Good luck
Anne

Hello Irene

What about trying Aromasin (Exemestane) ? I didn’t want to take Tamoxifen so was put straight onto Aromasin in June. I have some side effects but it’s bearable.

I do have dreadful hot flushes and sweats. At night I sweat so much and my nightdress gets so wet with sweat that I need to change it halfway through the night (sorry for details ) !! Like you Irene I haven’t had a decent night’s sleep for a long time. However I have had only minor muscle and joint pains so far. I am taking Glucosamine and cod liver oil capsules which seem to help.

Hope you soon feel better Irene.
Take care
Anthi x

I started on Aromasin in September. For the last 5 weeks i’ve been suffering from pain in my wrists and thumbs and have been treated for possible Tendonitis or Carpel tunnel. Tonight i started getting pains in my toes. Could it be associated with Aromasin instead? How long after starting on an AI have these side effects started?
Kelley

Do have a look at the other posts on Arimidex - on this thread. A lot of ladies are suffering with quite bad side effects, it makes interesting reading. There is a direct link with bone pain and AI (aromatose inhibitors) and can lead to oesteoporosis , so you need to be aware of this. Have a look at my other thread - Arimidex side effects - I am about to make the decision to come off the drugs (after 2 1/2 years), but will have a final chat with my oncologist next week. I have so many side effects, that I feel the time has come to get my life back!

Whatever you decide, good luck.

hello again ladies

Can I ask if any of you, who are taking Arimidex, have been prescribed bisphonate tablets as well? These are normally given because the Arimidex causes thinning of the bones and they help to prevent this. I take Bonefos.

Barbara

Thankyou all so much for your replies. I am touched. I really don’t know what I would do without this site. Feeling so bad just now. Strangly woke this am with much less pain. Skipped my pills as mentioned but began thinking, I am feeling a bit better before skipping arimidex etc so there maybe another reason, so this aft took pills a bit later. The swelling in my foot has reduced too. Beginning to think It maybe had a viral thing and sprained ankle!

Very worried about coming off arim coz tamox sounds bad and I constently battle with my weight.

Having major probs with OH, will post on family thread part coz this is getting me so down, just want to thump him. Aaahhhh. Beam me up scotty, I want a normal life again.

Irene

I was put on tamoxifen during chemotherapy, but when I went onto rads my Oncologist (sadly gone into cyber space as I was discharged after finishing them) put me onto Arimidex, which I was ecstatic about - this was almost 5 yrs ago. I had bad left hip pain, saw GP (who hasn’t a clue about bc), sent me for an x-ray at my local community hospital rather than referring me back to the main hospital where I am treated for bc and Crohn’s - normal. Went back to see him, sent me for 3 months of weekly physio. Still could not sit on a chair for long with my foot up on a stool, or sleep for more than 1-2 hours without waking up with pain. Then,l saw my bc surgeon for annual review - told him about my left hip pain and I got a bone scan within 2 days. Result thankfully was not bone mets, but arthritis in both hips, hands and feet. My bc surgeon put me on to Alendronate Acid weekly, with daily Calcichew/Vit.D tablets and the pain has diminished to a tolerable level. I also take a morning tablet of codeine phospate - ostensibly for my Crohn’s but it does help me get going in the morning with the hip pain. I don’t think Arimidex has anything to do with my joint pains, - I am 63 yrs old and just have to learn to live with the problems of getting older. I recently had a DEXA bone scan because of some 30 yrs on steroids, and my bones have thinned dramatically. So, don’t always put bone pain down to Arimidex - there can be other factors which can be involved. I would suggest having a bone scan, just to see if you have arthritis - such a simple solution to take bisphosphonates, and rule out bone mets.
Liz.

Hi Liz

Thanks for your comments. I have had both a bone density scan and a bone scan in the last few months so hopefully that has been considered. Def feel 100% better today. Have considered that i may be doing too much work wise. I only work 2 days a wk but these are long, stressfull and full on. I don’t stop from 7am tp 7pm literally, not even time for a lunch break. Thinking about seeing my boss to discuss this next wk but don’t know what the alternatives could be.

Irene

Hi Irene

Just to add on to what has been mentioned. I started Arimadex some 2 years ago, and I had all the usual aches and pains and a I dont know if its something that I have got used to but now everything seems ok. I walk everyday for about 1 - 1 1/2 hrs after work and its not a problem. So perhaps just see how it goes, it might be worth just giving it a little longer? I think that the whole experience of bc leaves you mentally and physically shattered. I lead a pretty full on life and I find if I do too much I pay for it at some point. So what I do now is go to bed at about 8.00pm for a few nights just to catch up, because as you can see from my posting since having the dreaded I wake up 4-5 times in the night.
Anyway, good luck with your decision, but it does seem to get better…
Love Debbie x

Quite interesting the bit about alcohol. I have noticed that since being on Arimidex - just coming up for a year - my system has become quite intolerant. I used to be able to enjoy a glass of wine on a night out and get gently tipsy - now I go straight into the hangover … such is life… I will be saving money this christmas!

After a wk off, I had some wine last night and low, I was back in pain again today. I’m not a big drinker but like a social drink and feel so pi***d off that yet 1 more thing has been taken from me.

Irene

Sorry to hear that…these side effects an be a bit of a bug bear - but at least now you have a lever against some of the pain! I am going to try a good malt whiskey at Chrsitmas -in the event that it may only be the grapes that cause the trouble.

Hi ,
Can anyone tell me how soon after starting to take Arimidex I might begin to see some of these side effects? Have only been taking them a few days ,but having read some of the posts about it , am starting to worry. I’m going back to work soon and as I teach 4 year olds am wondering how the joint pain might affect me?
Thanks
Margaret

Ive been on Arimadex for 1 month now and have not had any side effects (that I know of) Just my usual aches and pains. Ive been taking Calcium and Vit D capsules since I went through the menopause 5 years ago. Now I also take a soluable Cal. & vit D tablet about every 3rd day.
My Oncologist told me when he gave me the prescription for the Arimadex it was important to take Calcium.

My joint pain started at about 6 wks, was almosty unbearable but them eased off. Recently returned but think it may be linked to alcohol? Exercise seems to help, and I have been losing weight in the hope this will ease my joints, and also make me look less like a barrage balloon!

Irene