Has anybody out there finished their five years of arimidex?

I was wondering if anybody knew whether the joint pain stops after the treatment finishes? I’m having terrible pain at the moment - I started Arimidex in January - and it would be easier to cope with If I wasn’t worried that it was doing permanent damage. I can hardly walk and it hurts just to stand at the moment, I’m 50 and I really shouldn’t be in this state!
Julie

Hi Julie

I can’t really advise as I’ve only been on them for about 7 weeks, but listening to other’s comments it can seem to go on for years. One lady commented that it was starting to subside after a year, but a year on these things would be too much. Another lady I was chatting to the other night on here had been on them for four years and was still having major joint pains and had just switched to another one. I felt great on Tamoxifen, had no problems, now feel like a geriatric at 51 and also got no energy and feel generally down and irritable.

Julie

hi julies’
I’ve been on them since jan and like you feel like 70 and I was a fit 52 year old when I started all of this-I take devils claw which seems to help sounds awful but I read somewhere it was good for arthritis so I’ve been taking the max dose.Weekends I’m worse because I’m up and about more-weekdays I’m at work and do more sitting-the downside of that is the weight gain/

I have been on Arimidex since last September and I get a lot of joint pain in my knees and hips particularly. But I try to go to the gym nearly every day and I really think that this helps. I have taken advice from a personal trainer and started very gradually and I am surprised at how my mobility has increased. My joints still hurt but not as badly as they did a few months ago. Maybe I would have been someone whose pain decreased after a few months anyway, I can’t tell, but I will keep up the good work in the gym as I have also lost almost 1.5 stones since January!

All the best
Anne

Hi Anne
do you do any particular excercise in the gym-I tried the treadmill and just walking felt like it was bone on bone in my knee joints

Hi Julie49 -
think I am the lady Julie22 is referring to. I had been on Arimidex for 4 yrs but the hip,feet and hand pains were seriously affecting my life - walking and sleeping, so with my GP’s approval, I stopped it for 4 weeks. All pains gone. He wrote to a new Onc for me (mine retired last year, but hadn’t seen him since finishing chemo and rads in Feb 2004) asking for advice, when I thought I was getting a referral! I just yesterday picked up a copy of her letter to him and it says:

“I think it is perfectly logical for her to stop the Arimidex and stay off it now. There isn’t any information which can help guide as to whether four years would be as good as five. The only original trials we ever had on duration on hormone therapy were two years of Tamoxifen versus five years, when five years was seen to be better. Therefore all hormone therapy now is generally given for five years. However if her quality of life is significantly impaired on the Arimidex, I don’t think she is going to be better off with any of the alternative Aromatose inhibitors and I would be happy for her to stop the Arimidex at this stage.”

A further letter to my GP, which I haven’t got a copy of, recommends switching to aromasin, which I did last week. I want all the chances I can get.

As a matter of interest, if you haven’t had a DEXA bone mineral density scan (not an ordinary bone scan to pick up bone mets) you may wish to ask for one, even as a baseline, as Arimidex does not protect the bones as Tamoxifen does. If you have signs of reduced bone density, a bisphosphonate (Actonel, Alendronic Acid, etc.) will be prescribed, along with Calcichew/Vit.D3 to prevent further bone loss. Unfortunately, I have Crohn’s too, and a gastroscopy last week showed signs of stage 1 oesophagitis which my gastro believes has been caused by the 18 months of taking alendronic acid which he advised me to stop immediately. He has referred me to a Professor of Endocrinology for evaluation and suggests second line therapy, such as teriparetide (which I had never heard of) which is given as an infusion and will not arritate my oesophagus as alendronic acid has and has ordered an urgent DEXA scan, since I have not had one in over 2 yrs. I am osteopenic, due to 30 yrs of steroids for Crohn’s, and which has been exacerbated by 4 yrs of Arimidex. I had two fractures in both feet last year, so really need to do something about protecting my bones before I break a hip!

Julie49 - try switching to another Aromatose inhibitor as I have done…still to early for me to say whether the Aromasin will give me joint pains, but I am willing to try it.

Take care,
Liz.

Kattona

I do the treadmill and bike plus a variety of floor exercises and some resistence exercises with light weights. A lot of this is in connection with osteopenia, which was discovered when I had my first bone density scan. I am now taking alendronic acid and calcium plus vitamin D because of the osteopenia. I did speak to my doctors about what exercises I should be doing and didn’t get much advice I’m afraid so I have relied on a personal trainer at the gym. I didn’t want to start an exercise programme without any advice and wouldn’t want to recommend doing so to you or anyone else. Can you speak to your doctor or is there a qualified person at your gym who could work with you on a suitable programme?

Good luck
Anne

Since starting Arimidex last September, it’s only the last few months that I’ve been really suffering with horrendous aches and pains, lethargy and bouts of nausea. The nausea bouts last for about 4 days and I can’t face food during this time.

I had a yearly check-up mammogram last week, so I have a follow-up appt in 4 weeks time to see my surgeon. I was going to wait until this appt to ask to be taken off Arimidex and prescribed another Aromatose inhibitor . The aches and pains plus sleepless nights and generally feeling yuk have got so bad that I tried to ring my breast care nurse this week to ask if I could lay off the Arimidex until I see my surgeon on 10 Aug, I was greeted with an answerphone message to say she is away until end of July… great!

I just need a break from feeling like a 90 year old needing a zimmerframe, I need to catch up on my sleep, I need to stop feeling nauseous, so I don’t know whether to say ‘to hell with it’ and just stop taking them now.

My cancer was Stage 1 with a very good prognosis, so I can’t see that stopping them for 4 weeks will do any harm… or will it? Catch22 eh?

Thanks for the replies. I’m sorry that so many of you are effected by these side effects. My breast cancer nurse was really dismissive of it and told me it was just part of aging, but I know many people in their 70s who have better mobility!

Liz - It’s good to know that your pain stopped withing 4 weeks of coming off arimidex. I don’t want to stop taking it, bearing in mind that i want to do anything to reduce the risk of recurrence and i’m not sure whether switching to another aromatose inhibitor would help - I’ve been looking at the cancer research website and aromasin causes joint pain in 1-10 women (the same as arimidex) while with femara there’s a 1 in 5 chance. I’m just hoping that I can go back to normal in five years.

I’m osteopenic too and I agree the alendronic acid is very harsh. I’m still taking it, but I do take omeprazole which can prevent reflux. My ankles are the real problem - every step hurts intensely and even resting with no weight on them I have to keep flexing them to ease the discomfort. My feet, hands, wrists and knees hurt too but fotunately not so much. I’ve had to start walking with with a stick which I find very depressing. I used to walk and cycle everywhere.

J

After posting the above, I rang through in desperation to my surgeon’s secretary, only to be informed that my surgeon was also away on holiday but she was a lovely person and asked me what was wrong, I explained the situation and said all I wanted to know was whether I could stop taking them until the appt on 10 August. She said to leave it with her and she would try and contact another cancer doctor on the team and that she would ring me back. She has just phoned me back after consulting another doctor and said ‘He said… yes, it’s perfectly alright to stop taking them now until the appt on 10 Aug’. Whoooo hoooo

Now I just have to see if it IS the Arimidex that’s making me feel like this… I’m convinced it is though. Will keep you updated.

Hi Spooks, let me know how you feel in a week or two without arimidex. I’m glad that I’m not having problems with nausea. Just tiredness and pain. My cancer was grade 3, so I’ve had double mastectomy and lymph nodes removed - I’m being careful not to do anything that could bring it back.
Kattona - where do you buy devil’s claw? I’ve tried everything from tabritis, glucosamine, and flax seed oil to a strange tree bark concoction from south america - may as well give this a try!
J

Forgot to mention in my original post GP prescribed Pregabalin and they have helped somewhat, although hasn’t totally gone.

Julie

Hi Spooks - I have been on omeprazole for about 4 weeks, since I went to my GP with severe nausea, weight loss of 18 lbs, total loss of appetite,pain in upper right quadrant etc. Omeprazole didn’t help so in desperation as I had no Onc, rang my IBD nurse. She got me an appt with my gastro next morning. He doubled the omeprazole, prescribed domperidone (which I had when on FEC chemo), a CT scan, and a gastroscopy. He rang me Sat afternoon last, after he had reviewed my scans with a Senior Radiologist and advised me to stop the alendronate, hence the referral to a Professor Endocrinology GP made yesterday… Hopefully he will prescribe a bisphosphonate that can be injected or given by an infusion. I live in hope, although need the strictures and inflammation sorting out first. Gastro doubled my methotrexate dose and has also prescribed budesonide (a steroid) to try and bring the inflammation under control. I could be barking up the wrong tree (or just barking mad!) but I do wonder if the Arimidex, along with the alendronate, has caused my Crohn’s to flare, as I was perfectly stable on methotrexate for 7 yrs, except during FEC treatment. Think my gastro was correct in saying I have “empirical” problems - had to look that up in a dictionary - bet JaneRA knows what it means, the clever lady.

Enough for now, going to watch “Separate Lies” on DVD with hubby - close the lounge curtains, get one of my new elemental drinks (Fortijuice) and try and forget for a few hours at least, my health problems.

Liz.
1

Update… after 36 hours Arimidex free

I didn’t take an Arimidex last night :slight_smile: The aches and pains haven’t totally gone but they have really lessened considerably, I managed to come down the stairs this morning without feeling as if my Achilles tendons were going to snap and also feeling much more confident my knees weren’t going to give way. I only took one strong painkiller this morning and at the moment I feel pain free.

Nausea, no difference as yet regards this. Lizziecee I have only been taking Prochlorpazine 5mg (Stemetil) for the nausea, so I will wait a while longer before making an appt with my doc if it carries on. I also have some Metoclopramide 10mg for nausea that was prescribed for me for the nausea I sometimes get with migraine. I might swap over to those to see if they have more effect than the Stemetil as Stemetil seems to have no effect whatsoever.

Hot Flushes, again no difference yet… had three already this morning and I did take a Starflower Oil Capsule last night too.

Sleep pattern hasn’t changed either, got woken after 3 hours with a night sweat.

Hi Spooks - I have only beeon on Aromasin for a week and already have got the pains back in my feet and left hip. Think I will stop it until I see a Professor of Endocrinology which my GP has referred me to. Perhaps he will agree with the new Onc I have not seen, and advise that 4 yrs of Arimidex is all the protection I need for my bones. Have had to stop Alendronate as it has caused oesophagitis but hoping he can prescribe an injectable or infusable bisphosph as I already have ostepenia and two spontaneous fractures in both feet last year.

Nobel Prize for anyone who sorts this mess out!

Liz.

Hello,
I just wanted to add to your thread here about joint pain when taking Arimidex, or another one of the aromatase inhibitors.
As you all know bone pain is a common side affect of aromatase inhibators, however, treatment for breast cancer is a balance between preventing the cancer from returning and keeping side effects from treatments to a minimum.

From several of the posts here it sounds as though some of you are experiencing awful bone pain that is affecting your daily life.

Pleases do consider talking with your breast care nurse and/ or oncologist about the side effects you are experiencing before stopping and prescribed treatment or starting to take on supplements or complementary therapies.

For more individual advice you would be very welcome to contact our free helpline on 0808 800 6000

Best wishes
Tara
Clinical Nurse Specialist

Spooks - I have just seen my oncologist for the first time yesterday to discuss the radiotherapy and hormone treatment. He strongly recommended radiotherapy for me (stressing this is all our choice - we do what we want) but said that the hormone therapy was not so clear cut. Despite the fact that my cancer was maximum oestrogen receptor positive 8/8 - therefore would gain the most benefit from Arimidex (or similar) - he explained because my cancer has such a good prognosis the actual benefit is actually quite small - only about 1% extra reduction in recurrence - and if the quality of my life is affected because of side-effects he thought I should be aware that this is totally my choice. I decided to start taking the Arimidex - to see if I do get any side-effects - but was advised to continue for at least three months as there may be transient ones. If I struggle, I will not bother. I am very glad he told me this - and it may be worth asking your oncologist at you next appointment what difference it will make to you as you have early stage cancer too. Mine was Grade 1, 12mm, ER+, no cardiovascular or lymph node involvement - also tubular which I think is better too. Please don’t take this into your own hands anybody- it will vary from person to person - check with your oncologist!

ClinicalNurseSpecialist… Tara I did try to consult with my BCN and the surgeon who did my op but both are on holiday. As you can see from my post, I rang his secretary in the end and she kindly relayed my casenotes to the surgeon who was in charge whilst mine was away and he OK’d me stopping it for 4 weeks until my appt on 10 Aug when I can discuss it in depth. Apparently… his words verbatim were ‘it’s obvious she is unable to tolerate Arimidex’

One or two of the side effects I could put up with, but NOT all the ones I have suffered for the last 10 months. I just don’t seem to have a life at the moment, I am unable to plan anything in advance just in case it’s a day I don’t have the energy to do anything or I am crippled with pain or feeling nauseous.

I am not willing to put up with hot flushes, lack of sleep because of night sweats/painful hips & knees, lethargy, shortness of breath sometimes, nausea, swollen ankles, severe chills alternating with hot flushes, blurred vision, having to take strong painkillers to combat the aches and pains and generally feeling like a 90 yr old anymore… simple as. Forgot to include horrendous weight gain too.

loobytuesday… This is what my report said

Carcinoma left breast - T2 (25mm), G1, N0 - (0-5) M0, Stage 1, NPI 2.5, ER+++, PR+++, HER2 neg

I looked up what all the abbreviations meant, especially what the NPI 2.5 meant on the Nottingham Prognosis Index (its a system doctors use for deciding whether statistically you have a good or not so good prognosis) and anything under a score of less than 3.4 - suggests a good outcome with a high chance of a cure. So with an NPI of 2.5 my prognosis certainly looks good, although the NPI is a useful guide it is not absolutely reliable.

I guess the difference between my cancer and yours is mine being ER+++ whereas yours is only ER+

Another update…

I feel great today, no aches and pains or nausea.

I always tell newcomers not to look at threads concerning future treatment and just broke my cardinal rule - I have one more chemo, then rads, then hysterectomy & I sort of thought the 5 years of whatever was sort of like taking the pill. Now I know different.

So sorry ladies - this sounds like very nasty icing on a poisonous cake.

Cheers to all, M-L xx