stopping my arimidex

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I’ve mentioned on here before about the side affects I am getting from arimidex but this week it’s got pretty bad. Had sore and aching joints all over for a few wks. Was given the option to come off pills to see if things improved but declined. 2 days ago after a few days of all over pain, I started getting pains in my hands too. I’m an artist and found this very depressing to say the least. On top of all that I am also extremely stiff.

Exercise makes no difference, had a 4 mile walk today with friends, and looked like old mother hubbard stooping to get into the car afterwards. I am only 49 by the way.

Have been taking cod liver oil, no change, then glucosamine, no change.

So yesterday I took myself off the pills. I will ring my gp tomorrow to see if she is available on fri. By then I will have been off them for 7 days. I am hoping she will refer me back to the oncologist, but already know that he may offer me tamoxifen and there is no way I want to go on that, I struggle with my weight already for one thing.

Then there is the prospect of taking nothing. My physical health may improve, but I will then have the increased risk of the cancer returning. I am in a big dilema to say the least. Has anyone else out there come off arimidex because of joint pain? I would like to hear how you are getting on, and what was offered as an alternative.

Irene

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Hello Irene

I’m on Aromasin/Exemestane - which is another aromatase inhibitor and does the same job as Arimidex. I do have some side effects - hot flushes, dreadful sweats and some stiffness, but so far my side effects are not bad enough to make me seriously consider coming off the drug. I believe that generally people have fewer side effects with Aromasin than Arimidex.
Why not ask your GP/Onc if you can try it?
Take care
Anthi x

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Hi Irene -
I too thought of coming off Arimidex (been on it almost 5 yrs now) because of joint pains. I felt like 90 yrs old when I got up in the morning, holding onto the walls, doors etc. to get to the kitchen and make a cup of tea. I am 63 yrs, and a healthy 7st.11 lbs (only 5’2")

I finally saw my GP - who sent me for an xray of my hip, where most of the pain was, although walking was a problem, and I had to put my hands in hot water just to get them functional in the mornings. X-ray normal. I went back to him and he sent for 3 months of weekly physio - absolute waste of time for me and the physio. I then propritiously had an annual review with my bc surgeon (Onc discharged me after chemo and rads - did he think I was cured?)…
I told him about my hip pain and within 2 days I had a bone scan, which showed osteoarthritits of both hips, both feet and hands. Eureka! He prescribed a bisphosphonate, Alendronic Acid, along with Calcichew/Vit.D and the pain has diminished significantly, so I do get a better night’s sleep - although I still wake up 3 or times with the pain in the left hip.

I am convinced, by the research I have done, that Arimidex is the best preventative drug against recurrence for me.
I had a non palpable idc 2 cm tumour, and DCIS, with 4/18 lymph nodes affected, and I am terrified of a recurrence. So, for me, there was no question of discontinuing Arimidex, and I eventually found a solution to my bone pains. I also take one codeine phosphate each morning, which was prescribed by my gastro, and this takes the edge off the pain during the day.

I am coming up to my 5 yrly review in January, and am desperately wondering if I can continue with Arimidex. Are there any ladies out there who have managed to get it after 5 yrs? The USA bc forum has women who have been on it for 10 yrs, with no problems.

I too will be interested to learn of any alternative to Arimidex - I know there is another aromatose inhibitor, Aromasin, but I think we will still get the same side effects.

Personally, I can live with the bone problems - just had two fractures in my feet (spent a month in a wheelchair and on crutches) - rather than have a bc recurrence. It is I guess, all a matter of personal preference. Having lived with Crohn’s pains for some 37 yrs, bc is a lot easier to deal with I find.

Hope you find a solution, as I did.

Liz.

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Hi
I’ve been on arimidex for 20 months now and suffer from a lot of bad side effects including severe joint pain and stiffness…mainly in my hips and knees…I’ve been diagnosed with osteopenia and suffer from terrible tiredness and lack of energy etc. I feel that arimidex has really affected my quality of life.
I tried the other 2 AI’s but I found them worse than arimidex… I definately don’t want to try tamoxifen so I feel I have little choice…taking nothing is not an option, I wouldn’t want to run the risk…I had ILC, 3cm tumour with surrounding LCIS, 10/12 nodes positve and 8/8 er +.
So I’m stuck…but on balance I feel that I’d sooner put up with these side effects than risk disease progression.
Claire x

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Thanks to those who have replied. I must say I am beginning to get more and more worried about not taking any hormone treatment. My reason for coming off though was my quality of life was crap. I really do feel eighty yrs old and am only 49. It’s not just long journeys in the car, if I sit for more than 5 minutes I get out of my seat like an old croc.

Also, feeling low mentally and am beginning to feel a shortened life pain free is better than a possible longer one with all these side affects. BUT I do know that if I have a relapse, I’ll really regret my actions now. At least I will still be alive.

Help, I am so mixed up.

Irene

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Hi Irene

I’m sorry to read you are feeling down, it may help if you talk this through with someone from our helpline. The team on the helpline will be happy to talk to you and just be a listening ear if you feel you want to talk in confidence about your worries and concerns. BCC are here to support you so please use us if it will help. The helpline will be open again on Thursday 27 December from 9am to 5pm and the number is free phone 0808 800 6000.

Kind regards

Sam
BCC facilitator

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Irene - all I can say is that I came off Tamoxifen after 3 years as I could not live with the side effects. 17 years later my BC came back and I am now on Arimidex which is much better. But I do wonder if I had stayed on the Tamoxifen for the full 5 years whether it would not have come back. I find gentle exercise, yoga in my case, helps me. Good Luck with your decision and best wishes for 2008.

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Irene, have a look at my original post Arimidex side effects (I think it’s on page 3 now). What my oncologist said was interesting about the percentage decrease of effectiveness after some 2 years. Although I too am worried about a further recurrence - already had 1 recurrence - my oncologist did not think that the side effects I was suffering were acceptable any longer and I am now off Arimidex. Must say I do feel better, bone pain gone, although as I now have osteoporosis my spine will probably deteriorate over time. I still have some hot flushes, but manageable, but my head is ‘clear’ for the first time in 2 1/2 years. I have a further cholesterol test in a weeks time so see whether my levels have gone down a bit and a further thyroid test, again to check for levels. Also am having another liver ultrasound, as they enver really found out why my liver is enlarged - despite clear ultrasound, MRI and LFT.

Whatever you decide, do have another chat with your oncologist first, you may be surprised what he has to say. Good luck.

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I’ve only been taking Arimidex for 4 months now… the first 2 months were unbearable with aching joints and hot flushes. My breast care nurse suggested I take Starflower Oil Capsules, 1000mg containing at least 220mg of GLA. I have taken Starflower for 6 weeks now and have noticed a remarkable improvement. I still get slight stiffness first thing in the morning, but it soon wears off. The hot flushes have reduced from 12-18 a day to 5 or 6 in a 24 hr period and a lot of the time, I don’t have night sweats. I did a search on Google when I first started taking Starflower and found they are recommended for menopausal symptoms [hot flushes] and aching joints, as GLA has anti-inflammatory properties, amongst a host of other things. It takes 6-8 weeks for the Starflower capsules to take effect and I am now feeling the benefit from taking them.

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Hi

Has the starflower oil been confirmed as having no plant oestrogens? Anyone whose tumours were oestrogen postive shouldn’t be advised to take anything containing phyto oestrogens.

Are starflower capsules easily available?

Thanks
Reg

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I have no idea if it’s been confirmed as having no plant oestrogens, but from a brief search on Google, I can’t find anywhere which says Star Flower Oil contains them.

The cheapest place I found for buying Star Flower Oil capsules was Holland and Barrett online. They were on special offer when I bought mine. a 100 cost £9.62 inc P&P. The offer is still running, but for 50 capsules, which is still a lot cheaper than buying 1000. (edited by Moderator)

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I was told that I couldn’t take sun or star flower remedies because of the plant oestrogenes in them, but know from my sister that they both work well (she doesn’t have BC).

I came off the arimidex and bonefos for 2 wks as suggested by my GP. No change in joint pain so now back on and waiting for further app with onc.

I am taking anti inflametaries, and glucosamine too but just started them so not sure if they will help.

Irene

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I find paracetamol is the best to control the aches and pains of Arimidex. Am seing my onc in Feb so will check then as was told I may have sciatica. Am really fed up with all the side effects - hot flushes, tiredness especially as I am doing all the right things, eating properly, not overweight, exercising.

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goodness i am starting Arimidex in a weeks time, not sure i want to now!!! i have also heard that it can cause blurred vision, has anyone here had that yet? i know the zoladex really effected my eyesight, not looking forward to this drug but i feel i have no choice but to take it, i too suffer dreadfully from my hip and knees, that all started on Tamoxifen, then carried on whilst on zoladex, i have not had any homrone treatment now since the 6th of December 2007 as i had to go into hospital on the 18th of december for my hysterectomy so had to be hormone drug free for the op, i actually think my hip is a lot worse now then before, but i have little faith in my gps or the hospital so i will probabley just come on here and moan about it now and again

love to you all

Alisonxxx

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Hi to everyone

I was told i could take Starflower Oil but not Evening Primrose Oil as EPO contains plant oestrogen’s. It is dreadful that in this day and age we have to suffer from such side effects from the drugs that help to keep us going. It constantly amazes me that nearly 40 years ago we managed to allegedly put a man on the moon but cant take a drug with little or no side effects.

i remember posting here through August and September when i had the really dreadful sweats from the Arimidex, my quality of life was really impaired, some of you will remember I used to take a towel and change of underwear out with me everywhere! I kept upping my dose of Chlonidine till i was on 9 a day, took my Starflower Oil and Falxseed oil, sage and everything suggested on these sites and finally the sweats started to subside to a very acceptable level. I remember my Pharmacist, also a BC patient, telling me that things would settle down eventually, I really did not believe her, i was suffering so much and just could not see an end in sight! Well 6 months on and i really don’t which one of the above treatments has worked but I do feel much better, the flushes are far more acceptable and controllable and i am, touch wood and every other material, able to continue my life more or less as before. Of course i darent stop any of these things I have been taking in case the flushes and sweats come back with a vengeance. I certainly do not want those dripping sweats back!

Strangely my sister-in-law, my pharmacist, the lady behind the counter in boots and also the sales assistant in Debenhams are all on Tamoxifen and they have hardly any side effects at all and look at me in amazement when i list mine!

I have met another lady on Arimidex while on holiday in Lanzarote in September, she was just finishing her 5 years on the drug and the only side effect she had bone wise was in her feet which she sometimes found stiff. I have had sore feet since taking the drug, sometimes it feels like hot coals on the bottom of my feet when i walk but please God that does not happen very often. Certainly it takes me a while to get out of bed in the morning, i refer to it as putting all my joints back in place. Hips sometimes keep me awake but thankfully not nearly as bad as some of the ladies posting on this site, i always say though “never say never” and i have only been taking the drug since July. I do wonder also if winter has something to do with aches and pains, I have arthritic thumbs and big toes and they always seem worse in winter. Also with the cold weather that could be also helping with the flushes.

Ireme M we have posted together on this site many times, I do hope you find something to help you, I know you were very kind in your postings to me when i was really suffering. Please keep badgering your medical team to try and find something to help you, I want you to feel confident and at peace with things again, doubt and worry is terrible, I am the worlds biggest worrier, it holds me back so many times and I do not want to think of you out there worrying. Keep on at your team and insist they look for something for you even if it is to help with the pains. I still take my painkillers since surgery, my GP told me they would never prescribe something that my body was not capable of taking. My aunt has been on Nurofen based tablets for pain for as long as i can remember and she is fine. Love to you anyway and i am thinking of you.

All the best to everyone
Suzzanne

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Irene M

I also take calcium and gluso every day, am sure they do help, good luck with them.

Suzzanne

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Hi everyone

My cancer was strongly ER+ but I have been told E P oil is ok to take. Flaxseed, however, when I read the back of the pkt, says it is “full of phyto oestrogens which help with menopausal side effects”. Am v confused now

Glad flushes are better Suzzanne.

I came off my daily dose of the anti depressant citalopram for a week and felt great…loads more energy and no more blurred vision, then BAM. Hot flush after hot flush and the feeling that I wanted to stab my hubby. I took a whole citalopram pill and went to bed for the rest of the day. When I woke, I felt so much better and no hot flushes. I now take my Tam in two doses, am and pm as I was feeling nauseous after taking it and I also take my citalopram in two doses at the same time. I have found that 1/4 citalopram am and 1/4 pm is enough to ward off hot flushes but I don’t feel so tired. Real b****r cutting the things up though even with the help of a pill cutter.

Debbie
xx

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Hi Debbie,
Nice to speak to you again. I think everyone is confused about what is ok to take and what isn’t. I remember i posted a few weeks ago about these blasted phyto oestrogens. I was looking in a BCC leaflet which said that Japenese women have a very low incidence of BC due to eating a diet high in phyto oestrogens! I really do think the jury is out and nobody, doctors, surgeons really knows whether they are good or not. I do remember though being told that it was thought they prevented BC. Phyto oestrogens are also found in a lot of everyday foods we eat like tomatoes which i have always loved, the thing is if Phyto oestrogens which are found in a lot of food causes BC then why is everyone not afrflicted by the disease. See how confusing it all is. One surgeon says no, the other says yes, what are we to do. Someone on this site once said that Phyto stands for Plant not human. All i really know is that something is definately helping me have my quality of life back and only by the process of elimination will i find out what it is and because i am such a woose i don’t want to go back to those horrid sweats.

Citalopram that is a new one on me, will file it away for future use, just in case the dreaded sweats come back, Chloniide is great at present but what will happen when i am on 60 tablets a day!!

All the best
Suzzanne

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I know what you mean Suzzanne. My BC nurse says a little of everything in moderation and I know that a lot of women with ER+ BC are not even told about phyto oestrogens. Onwards and upwards!!!

Debbie
xxx

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My BCN said StarFlower Oil was perfectly safe to take, but avoid EPO and Flax. Each day I seem to be feeling better, even after having a heavy cold, hardly any aches and pains [only when I over-exert myself], hot flushes still only 5 or 6 a day and best of all, the tiredness and fatigue is easing off quite a bit now. Whether it’s Arimidex having plateau’d itself out to an acceptable level after 4½ months or it’s down to Starflower Oil, I’ve not so much reason to moan now, even the violent chills I had are getting less and less. Like a lot of people I am impatient and expect to see results immediately when I take new medication, but I was warned it would take at least 6-8 weeks to notice the benefits of SFO, so I like to believe it’s down to STO capsules, as I’ve been taking them since early November now.

I keep thinking about taking Glucosamine & Chondroitin tablets, my dog, a GSD has been on the human variety of those for 4 years now as she has hip dysplasia and she does well on them, so I can share them with her LOL but they are a huge tablet to take!

Suzzanne - we spoke on another thread about Clonidine and I mentioned it to my GP, you asked me to let you know, he said it’d be of no use to me as I am already on medication for Arrhythmia and tablets to lower BP, which in essence is all what Chlonidine does.