Hi ladies, due to see my lovely surgeon tomorrow, so doing some final bits of web research to support my assertion that Tam is causing my joint pain. I found this journal article from 2010 that suggests using the 'posh' form of Tamoxifen called Nolvadex rather than the APS/Wockhardt/Generics might alleivate these symptons... http://www.ncbi.nlm.nih.gov/pubmed/20347307
Suffice to say I am printing off the abstract to show to my team! You may also like to show it to yours....
Thanks RevCat, it's soooooo painful, up half the night and difficult to get upright. What the heck???
Hope things are sorted for you too and you find the right source of your pain. Please keep us up to date xx
Hi Katy, sorry you are no further forward. See my lot next week - am planning to go armed with details of the research papers I've found (which are mostly about AIs but one says AI's have higher indcidence than Tam...).
Spoke to BCN today and she says it is definitely not the tamoxifen, so will have to make appointment with doc, please let me know how you all get on xx
Thanks Janet found it on google. Thanks
I don't think the "advanced search" option will take you to the chillow, but I had a look through some old threads and found this one. Here's the link:
I hope this is helpful for you.
Very best wishes
Thanks RevCat. Like u don't fancy any more drugs but got to the stage where I need something . Never heard of chillows but goin to look it up now if I can!! Not to good on computers but wonderful what u learn sitting at home with time on ur hands. Thanks again.
sorry to hear of your night sweats - they are so yuk aren't they? I'm not sure you can stop them (unless you switch brand and are lucky enough to find that works for you) but some people find using a chillow helps (I certainly do)... if you type 'chillow' into the advanced search keyword thingy it will pull up some thread on this possibility. Other ideas people use are electric fans, water sprays, slepeing on towels (to absorb the water).
I have several night sweats a night but to be honest, after a while I kind of got used to them - wake up, turn over and drift off again. For me the chillow (I have two, one suplied by my BCN, one I bought) has been money well spent, but they aren't cheap.
A few people take drug routes (low dose beta blockers or low dose anti-depressants) but that wasn't a route I fancied.
Hope you get some relief soon
Hi there can anyone tell me how to stop night sweats. On tamoxifen now for 5 months an am like a zombie with gettin little sleep. Grateful for any ideas. Debs
i mentioned it to my breast care nurse last year she said quite a few of her ladies have this problem,she suggested insoles from chemist i tried them with not much joy,but they may work for other people katytc have you mentoined it to anybody and got any advice,i am going to try my gp on wednesday evening i have an appointment anyway,if i get good advice or answers as to why i will let you know missmessy
An update, I stopped the APS tamoxifen 9 days ago and am now taking Wockhardt version, a few days later seemed to be a little better, now back to chronic pain again, struggling to get up and move so am phoning BCN tomorrow, I already have pain from an unrelated disorder and am finding this very difficult, please let me know how you all get on xx
Hi Ladies !
I thought it was just me with joint pains, sorry you all have it too.
sometimes I can hardly get out of the car or out of a chair. has anyone asked if the lower dose of tam might help? I have my big check up at the end of this month so thought I might ask the question.Also am having stomach cramps with new brand of tam....anyone else had that ?
I have the joint problem too! 11 months on tamoxifen, tried all brands...all same symptoms!
Onc just shrugged and basically wasn't bothered!!!!
GP....very concerned and consulted his little book and went off to grill onc.....
Apparently joint pain is not listed as a side effect but anecdotally loads of ladies have problems!
He found out from onc that I personally had a 5% benefit from taking it and the decision is up to me!
I decided to have a weeks holiday from taking it and the difference to aching was dramatic....and the aches started up again within 24hrs of restarting it!
I am taking glucosamine, codliver oil and vitD, Evening primrose and eating 2tblspns linseeds.....I am still stiff and have to take 10mg amytriptaline and 2 ibruprofens to be able to sleep.
beverleys, sorry to hear your diagnosis, enjoy your glass of wine or two, you need a treat.
missmessy, I know exactly what you mean about the soles of your feet, mine is the padded bit and it throbs like anything, have you asked anyone about it? xx
hi i am also on tam i have been on for 2 and half years also have lot of side affects flushes etc, but worst ones are feet the pain sometimes i feel its like i am walking on bruised soles as if walking on pebbles.if i wake up at night and have to get up i keep a walking stick by bed because after lying there for so many hours i cant walk properly after a while it goes okay.if on long bus journey and come to get off i have problems then after walking a while it goes okay i dont walk with a stick never had problems before but if going out have started taking painkillers before i go out .last year i joined a thread on here about pain in joints on tam and there were lots of ladies the same and lots of ladies who had different side affects there were ladies who had no side affects at all it seems tam affects us all differently ,i know since taking tam i have slowed down a lot with pain and feel a lot older my friend finished her 5 year course a year ago she has lost 1 and half stone she had put on plus aching joints have gone she feels better and now as a tread mill,just have 2 and half years to go
Hi FeeC - I'm back from the hospital now and have just been diagnosed with rheumatoid arthritis, so it wasn't my hormones after all (although they could have contributed to the onset of it)- am feeling a bit sorry for myself now and need a big glass of wine to cheer me up. I would be interested to hear what your rheumatologist says too so we can compare notes. Hope you're feeling ok and not too puffy! Bev x
So sorry beverleys to hear that...you are really suffering. I would be really interested to hear what your rheumatologist says, my appointment is not until the 20th. My GP suggested that if the diclofenac worked I should just stick with that and not fuss but it is starting to have less effect and I just hate the idea of more medication.Interesting that you have it in your ankles too, that is what really troubles me. Vercos-I have some glucosamine and so will start to take them too...roll on six weeks time. I am aware typing this how swollen my fingers are. Take care ladies and stay in touch.x
Hello - I've not posted on here for a while but I am also in a lot of pain from my joints - it's good to know I'm not alone too, but sorry others are going through it too.
I am 2 years into 5 on Tamoxifen and am six months off Zoladex (I only managed 10 out of 24 due to the horrid side effects) and I feel like a 90 year old - I'm 36. Pain started in my foot/ankle and now includes both ankles, hips, wrists, fingers and shoulder. I had bone scans, x-rays and blood tests last year and I'm seeing a rheumatologist later this week. I have been given different brands of Tamoxifen and haven't noticed a difference in symptoms. My GP thinks it's still my hormones settling down and joints are still lacking oestrogen - I just want to know how long this will last as it's really getting me down. I'm not able to walk very far and am longing to go to the gym again. I'll let you know what the rheumatologist says....x
Changing brand did not make any difference in my case. I was on tamoxifen for 3 years and now on letrozole. I have beem taking glucosamine tablets soon after i started as I could hardly move my hands in the morning. I take the Holland and barret brand;, those you take once a day. They take 6 weeks to take effect, i would not dare stopping them for fear the pain would start again. In December, I was switched to Letrozole which is supposed to be worse for joint pain. I can now feel an underlying pain after two months of it,so I strongly believe glucosamine is helping me.
This is all really helpful...what I would be interested in is what exactly is happening to our joints to make them so sore. I have a physio friend who says that hormonal women even not on Tamoxifen can suffer too. I would like to find out if I will damage them by running/exercising through the discomfort and pain. I have entered some very expensive races this year, the first is The Mighty deerstalker on March 17th http://www.ratraceadventure.com/notorious/dsindex.html
which I need to be quite prepared for!! I ran through my chemo raising both funds for the local unit and the awareness of the benefits of exercise when receiving treatment but am finding this harder to deal with. The effects seem to come and go although my hands are always sore. I will definitely get to the chemist and ask his advice.
feeC, I am taking APS at the moment, the last few mornings I am having difficulty getting up out of bed, lots of rolling around until I can actually get upright! So really fed up with this now, I am stopping the APS today and trying another brand. I think I have only had APS once before near beginning but don't remember these symptoms will let you know how I get on, I usually have either Generics or Wockhardt xx
I have really painful joints too. It takes me ages to straighten up esp when I have been sitting cross legged on the floor. At times I feel like an old woman. I did however find different brands of Tamox had differing side effects. I prefer the APS brand as despite still having symptoms I don't feel as bad as when on other brands. I suppose its a small price to pay for keeping my hormones at bay.
Thanks ladies for all your comments...whilst I am really sorry you are all suffering too it is good to know that I am not the only one in this creaky old boat! It had never occurred to me that the different brands would have an effect...I have just rushed downstairs to check and mine appears to be one called APS. My chemist is pretty approachable (better than the GP sometimes) and so I shall ask him what he thinks. I have it in my toes too Katy, and some buzzing in my hands especially in the early morning as well as the aches. I just feel as though every thing should be sorted now and here I am moaning about my joints!what a comfort you all are. Thanks x
Thank you Angelfalls, maybe it's just old age??? xx
I have been on Tamoxifen since early September. The first packs were all Wockhardt and yes, I had the night sweats, hot flushes and pretty achy joints (felt like an old lady). When I collected my last script I happened to be given Generics brand and I have been using them for 3-weeks now. What I can say is that whilst they haven't gone away completely the night sweats/flushes have eased a lot as has the joint pain, which is a real bonus, and this happened pretty quickly after starting the different brand. I don't know whether this was brand related or coincidental that my body is now getting used to having the Tamoxifen in my system. Either way I am inclined to request 'Generics' next time round!
Hope the side effects are kinder to you soon.
Well, that sounds like the perfect brand-based experiment, Katy! Hope you get relief soon xx
I am feeling the same it's my ankle joints and toes, it's like I can't bend my ankles or big toe, but I can, if you know what I mean, they just feel really odd and painful.
It is debilitating, already have problems with walking, I didn't link this feeling with the tamoxifen. Would be interested if others have the same feelings. This time I was given 3 different brands from the chemist xx
Good point Angelfalls... my local chemist seems to alternate between two brands (Generics and Wockhardt). For me it hasn't made a difference but I know for others it can have a huge effect (especially on flushes).
Something that has come up on the threads is the difference that trying different brands can make. Just a thought, but have you tried taking a different brand of Tamox to see if that might help lessen the SEs? Good luck and hope you get relief soon, Angelfalls xx
Yes, there are a few threads on this on similar topics... low back pain (esp coccyx), wonky knees and (in my case) wonky thumbs/wrists (De Quervains tenosynovitis and other tendinopathy/tendonitis). I think those of us affected all believe it is the Tam that causes the problems (and there is a small body of scientific research to support that view) and all opt to carry on with taking it as we'd rather have the sore joints than the cancer thanks all the same (that plus evidence suggests AIs are even worse in this respect).
Can't give you an answer on the exercise, except that on the whole I find gentle exercise beneficial (if a bit ouch sometimes) and when it gets too sore I use wrist/thumb splints.
I have a 6m check up in a few weeks so will ask about it then.
I am sure that there is a thread there somewhere about this specific point but I cant find it...I started tamoxifen in August 2011 after chemo and radiotherapy. The hot flushes were horrendous but are very slowly improving but my joints are getting worse and worse, impeding a lot on my quality of life. My onc and surgeon told me to see my GP as they said it was not related to treatment, this was before they were as severe as now...he did arthritis tests which were -ve and with some pushing has referred me to a rheumatologist. I am on 50mg diclofenac x3/day which I am not at all happy about especially with no diagnosis. All my finger joints are sore to the touch, some more than others and ache, I have to garden with ski gloves on. I run a lot and am very active but this is being curtailed by very painful ankle joints, and the base of my foot at times. They are not swollen but ache even when I am at rest to the extent of disturbed sleep (as if the hot flushes weren't enough!!). I have been taking oil supplements etc as well as the anti-inflammatories. No medical person has mentioned the tamoxifen as a possible cause but after googling I think it might be, I am not due to see the Onc until June, nor the surgeon until I get a date for reconstruction. I suppose I really want to know is that if this is the Tamoxifen do I damage myself by continuing to push the exercise which frankly has been a life line to me throughout my treatment. Phew! any advice??