Arimidex - feeling low/despressed

Hi, I have been on Arimidex now for 9 months, having already taken tamoxifen for 2 years with no problems. Since taking Arimidex I seem to have every side effect mentioned on the packet, joint stiffness especially my right knee which clicks all the time. My feet feel tingly and strange when I stand up from a sitting position or getting out of bed, sleep - what’s that, can’t get to sleep then when I do I wake up sweating. Lack of sleep is making me weary and I have lost all interest in going out, when I do I feel really anxious and that makes me keep running to the loo! My husband is really fed up with me as I am short tempered and really would rather be on my own. Most of the time I feel really miserable and fed up.

Have read many blogs from you ladies and seems this is part of the course and we have to suffer the side effects but to what cost.

I don’t know if I can stand this for another 2 1/2 years. Would love to hear if anyone else feels like this or is it just me.

Hi Fudge,
Sorry you’re having a hard time on the Arimidex. I’ve been on it only 3 months and have had a lot of pain. I already have arthritis in the neck and that has got much worse. After a year of treatment for Breast Cancer, 2 ops, chemo and rads it would have been nice to have a treatment that wasn’t so tough but I’m now having hot flushes, the joint pain, a different place every day, mood swings, I’m either shouting or crying etc, etc, etc. I still have terrible “chemo brain” and feel I’m not safe to be let out on my own :wink:
My hubby has put up with a lot, he has been an angel and I feel so guilty cos I’m so short tempered with him.
I would imagine there are a lot of us who feel the same!

Helen xxx

Hi girls,

Go and get some low dose fluoxetine(prozac) - it’s helped me soooo much !!!

I swopped last year from tamoxifen to zoladex and arimidex because of side effects but the side effects on the new combo got worse and worse - the sleepless days and nights/hot sweats/anxiety/bad temper/emotional moments etc,etc as I’m sure you know. I felt I was turning into a really horrible person and wanted to run away from everything and everybody. Was at the stage where I’d had enough and tried alternative remedies so wondered about a break for a month or so but was advised against this because I have small bone secondaries and am at very high risk of recurrence and spread.

Eventually went to see BCN who recommended low dose prozac as she knew what I had already tried and how far I’d come without ‘resorting’ to pills and they have helped loads - the very first night I slept much better even allowing for getting up about 3 times and feel calmer. My chemo brain doesn’t seem as fuddled either - still rubbish but not as bad ! It’s not solved it all completely but probably by 40% for which I am extremely grateful. Also, my aches, pains and stiffness in joints seem better too ! My oncologist was glad that I was taking the pills and as it is only a low dose, she will up it if need be (hope not!) - for the first time since diagnosis I had cried a little bit when talking to her and she knew this wasn’t me and that I must have been desperate to finally start taking prozac.

It’s deffo worth a go.

Liz

Hi Fudge,

Sorry to hear you are having awful SEs from arimidex. How can 1 little pill pack such a whollop.

I agree with Lizcat. I have heard of cancer patients suffering from PTSD (post tramatic stress disorder).

I am almost 4 years on Arimidex - and it has been h*ll. Recently, after speaking to my doctor, I am now taking antidepressants, sleeping pills and going for counselling, some various music and art therapy. I just wish we had our conversation years earlier. I kept thinking it would get better - and I could “tough” it out.

If you want to keep on the arimidex, then just treat the symptoms. The joint pain is like (or possibly is) arthritis. So whatever is suitable for arthritis, would probably work for you.

An interesting note, apparently the brain requires oestrogen to function properly. So there is a reason why we feel fuzzy headed - now I don’t worry about it, I just excuse my muddled-head and move on.

Also, apparently the younger you are, the more likely your SEs will be more troublesome.

I am feeling a lot better with all the help I have received and feel pretty good about coming to the end of Arimidex.

So pleased that I came across this - as I had forgotten that some of the side effects include things like panic attacks, depression and sleeplessness!! I have some joint pain - difficulty standing to walk that I regularly blame on arimidex. But lately I have been so fed up and low, think I will take a trip into the the clinic and have a moan!
I still have another 18 odd months to go - roll on 2011…

Hi All
I’ve been on Arimidex now for 10 months and have had all the symptoms mentioned - joint pains tiredness and feeling low but have battled on and was feeling that I was having a rearly normal life but the last 2 months I have started getting migraine type headaches which are constantly there! Have had CT Scan on my brain bone scan and they (thankgoodness) are all clear!
Just wondering if anybody else has had a problem with headaches as they are really getting me down! Can’t concentrate and think my family are losing patience with me!
Help needed
Kaye xx

Hi All
I have been on Arimidex for 14months. Although I had joint pains to start with they went. I go the the gym at least five times a week. I have beaten the breast lymph with all the exercise I do and lost all the treatment weight. Should be on top of the world but I am not.
I can not get passed the low and depressed feelings.
My husband is 12 years younger than me has been great but now making love hurts even with the help of KY jelly?
I have this week stopped taking my Arimidex for a month to see if it helps me feel better.
However now I am worried. I have done the wrong thing?
jacqui

Hi I was diagosed with bc on 25 August and had a lumpectomy and a sentinel node biopsy on 8 September. When I received my results I was delighted to hear that there was no evidence of cancer in the nodes. The surgeon is referring me to the oncologist, but has said I will need at least radiotherapy and Arimidex. There is also a slight chance that the oncologist will decide on chemo. I was not too worried by all this, UNTIL I read all these alarming reports about the side effects of the drug. Can this be the norm and if so it would appear that the quality of life for a lot of women is being depleted. Having read all this when I do get my appointment I shall be questioning what other, if any, drugs are available. Does any one know of a drug that has acceptable side effects and is effective?

There are side effects, but you have to be aware of two things. Confirmation bias - which is relevant here because I suspect that the people who post are mostly those who have had problems. If you’re not having problems, you are less likely to post. I’m only seven weeks into Arimadex, so I haven’t said anything yet, but so far I’m absolutely fine on it.

The other is balancing the risk and severity of side effects against the risk and severity of not taking the treatment. I do think there’s a tendency for medics to minimise the impact of side-effects, and I wish they’d remember more often that we’re grown-ups, but on the whole I’d say the odds are pretty much in favour of taking the treatment and accepting that nothing in life is certain, and nothing is going to make things go back quite the way they were before.

Hi It’s me again, thanks for all of your help, it has made me feel better to know I am not alone. Have have spoken to Breast Care Nurse, her advice was to go to health shop to buy some herbal remedies, which I have done, but it will take weeks to see if they are any use or not, plus of course cost a fortune but am willing to give anything a try.

Am thinking perhaps I should go to GP to see if he can help as I am feeling realy tired and even more miserable this week, he will probably just refer me back to hospital. Wouldn’t it be great to feel normal again it seems a long lost memory at the moment.

Thanks for all your support. FudgeXX

Fudge,

GP may not necessarily refer you back - why not go and say you’ve heard that low dose anti-depressants can help and can you give them a go? They are used in low dosage for hot flushes and associated issues even though they were designed for another purpose.

It sounds so much like you’re having the feelings I was a month or so ago - see my earlier reply. The month I’ve been on prozac has been so much better - still get the hot flushes but nowhere near as edgy/anxious/bad tempered etc. And I’m sleeping better - still waking during the night but not as restless and nod off again quite quickly. Back to GP in 2 months time now for review.

I now feel much more like my old self.

Good luck, Liz

I was on arimidex for a year and the side effects got worse as time went on. In the end I went back to the oncologist and swapped to tamoxifen. Still have side effects but not nearly as bad as on the arimidex.

Rachy xxx

Yes, Rachy, I have been back on Tamoxifen for 7 weeks now (after 16 weeks on Arimidex) and in comparison it is like a walk in the park.

I continue to have aches and pains in hands and feet, and stiffness generally if I sit down for too long, and when I get out of bed in the morning, but NOTHING compared to the other side effects of Arimidex, in particular feeling “spaced out” all of the time.

Bubs X