tamoxifen and joint pain

[Guest user]

I have had....wockhart, generics and APS and am currently on APS and to be honest havent really noticed any difference! In the last few days I have been tiling a bathroom and boy have I ached...from tips of fingers to tips of toes....I am now waiting to see the onc on Tuesday and want to know if I can take a month off so i can really see whats going on! re calories I suggest eat less move more?

[elinda45]

Yes I have read about tamoxifen and grapefruit juice and you might like to see these links:
http://www.urmc.rochester.edu/news/story/index.cfm?id=720

http://foodforbreastcancer.com/foods/grapefruit

Grapefruit, particularly grapefruit juice can apparantly interact with quite a number of drugs. I haven't seen a specific warning on any of my tamoxifen information leaflets so whether or not it is still considered a problem I'm not sure - but I have read that it is. I've decided to avoid to be on the safe side.

with regard to weight gain, Cancer research Uk state that it can cause weight gain in 10% of people:
http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/tamoxifen

I've never heard of it storing 70% of your calories and quite frankly if that was true then you'd expect a far higher number of women to experience significant weight gain. I do hate it when celebrities say things like that without giving the source of their information.

the other to remember is that many women on tamoxifen are also getting close to menopause which can also lead to weight gain. I know I'm peri menopausal from blood tests.

I lost a lot of weight during treatment and slowly I've put two thirds of it back on. I'd like to blame the tamoxifen but I think in my case it's because I eat too much, pure and simple. I have though noticed that I'm storing more fat around my middle than I used to so whether that's tamoxifen or approaching menopause I'm not sure.
Elinda x

[katytc]

Don't think that's the case with tamoxifen just different makers TTM, I take statins so would be unable to have grapefruit. Statin box comes with a warning about grapefruit. xx

[tommyticklemou]

thank you revcat/katytc for that info.

i will see how the wockhardt goes and speak to my GP and onc when i see them in next few weeks for their opinion.

i am like you revcat and think i have to keep with the tamoxifen and want to find out if i can do anything to help with side effects assuming i get them. if i have to change some things to help then thats what i will have to do.

is one of the brands cheaper than others then and thats why they try and push that one more. i have read this about some of the AI brands.?

thanks all.

TTM

[RevCat]

Hi TTM,
Welcome to the wonderful world of Tamoxifen. Hopefully you will not have any yukky side effects, most poeple don't.

OK.

There are three brands of tablets, UK Generics, APS and Wockahrdt. The active ingredients are identical but the 'binding' stuff varies. I have had Generics and Wockhardt each of which has given me simialr side effects, though the significant joint pain can be traced back to when I started on Wockhardt. Other people will have other experiences. Some people have said that APS is the least bad for aches and pains.

Re: grapefruit, I have heard of this opinion. I know there is some general research going on looking at the interaction of grapefruit with various drugs (e.g. people on statins are told not to have grapefruit as it seems to increase its effects. Ironically one day people might be told to take lower doses and eat grapefruit...) I would speak to your onc or GP if you are concerned and see what they say.

Re: weight gain, all I can say is that a year on from starting on Tamoxifen my weight is the same as when I began - but has fluctuated and is slowly creeping up. I eat sessibly and exercise regularly, so it does seem to have some effect.

For me, at the end of the day, sore joints, hot flushes and watching my weight are a price I am prepared to pay to keep the cancer at bay. I have made some dietary changes based on scientific papers I've read, but none of them is yet 'proven' so I am not advocating them for anyone else.

I think the key thing is that we feel we are in control of what happens and that, should the worst case scenario occur, there is no sense of regret over what we did or did not do.

Hope that helps a little bit. Take care.

[katytc]

Hi TTM,

There are 3 brands APS, Generics and Wockhardt. I am taking Generics at the moment and that seems to be better for me regarding the hot flushes.
It depends on what your chemist stocks, I had all 3 last time so it was a good experiment!!
No difference with joint pains though.
70% WOW, haven't heard that before either and can't help with grapefruit xx

[tommyticklemou]

can i ask how many brands of tamoxifen are there, 3? and is there a general consensus that one is worse than the others - or does it depend on person and one can suit one person but then not suit someone else.

i have only just started on this a few days ago, and hospital gave me wockhardt. but i have only got a supply of 30 tablets and then i have got to get from GP they said. so wondered if he is likely to change to another brand or something. or do i want him to change to another brand as wockhardt is worse!. or does depend what local chemist stock.

had anyone read womans own mag this week, flicked through it yesterday at supermarket waiting to pay. jennifer saunders in there not particularly about her bc she had but she does mention she still takes tamoxifen and that she has lowered her calorie intake and goes out walking as the drug makes your body store 70% of your calorie intake? i havent heard about this. i have heard women mention about weight gain, but 70% of your calories seems a lot.

somebodys told me not to eat grapefruit as well as it reacts with it and can make less effective, is this correct. (the person who told me takes it btw).

any advice appreciated as always.

TTM xxx

[RevCat]

Thanks Alesta, good advice - yes I've submitted a yellow card and they have followed up... hopefully it'll be useful somehow!

[Guest user]

Hi all

Just wondering if you know about the yellow card scheme? The Commission on Human medicines can be contacted at:

http://yellowcard.mhra.gov.uk/

It's a way of health care professionals and patients reporting adverse side effects of their medication. Maybe if we all started reporting, it would raise the profile a bit.

I've been on the AMS version since December and not too bad. I have extensive mets (including bone) and am never sure if the low back and other aches and pains I get are the mets or the Tamoxifen!

I seem to have some swelling of two of the fingers in my left hand and the skin on my forearm is uncomfortable to touch, like the skin is stretched.

Ho hum. Guess this is the new normal for me!

Laurie x

[RevCat]

Hi Clare.... if only! Yes, we researched that - they stopped making it in 2010, just as research was published to show the link between generics (all three brands) and joint-pain.... I am the luckiest of the ladies on this thread as (1) my pain is less debilitating and (2) my GP and breast team believe in the link!

Glad you had the real stuff... I you so deserve fewer side effects.

[Guest user]

Butting in here............ Has anyone heard of NOLVADEX-D??? It is the original purest form of Tamoxifen that you can get. I was lucky, I insisted thats it was the one I had to have and got it for at least 4 1/2 years until doctors adjusted there budgets, because, of course it was much more expensive. It may be worth asking for it as I had next to no side effects ever from 5 yrs on it but did when they tried to change me over.......

I would have thought, logically it would be better to pend the money on the non generic proper branded one and then they wouldn't have to pay the extra for all the other drugs to counteract the SE of the generic one...........just a thought

Clare xxx

[RevCat]

Hi all, just wondering if anyone has any updates?

After two days of NASAIDs I am a little less sore - not painfree by any means, but better than I was - and learning how to take them so as not to hurt my tum! I have omeprazole to guard agaisnt reflux but still had severe gut-ache on day one. So now I have an NSAID sandwich every mealtime... half my meal... drugs... half my meal. It seems better. No difference on the stiffness yet... and tendons as clicky as ever

Before all this I never popped ANY pills!

[RevCat]

Hi Katy
before Tamoxifen I had perfectly good joints - all of them apart from my left knee which has allegedly been worn out since I was 29... two decades ago! It has never stopped me hill climing though. My ankles have some weakness due to prior severe injury sprains but otherwise nothing. Similarl to knee - walked Offa's Dike with a strapped ankle.

My Tam weakness began on my unaffected side - left wrist, and now involves both hands/wrists, several fingers, my left ankle and, perhaps due to compensation effects, my left knee. I also get some low back pain which comes and goes.

Yeah - 1 in 4 - so why do people say they don't know about it? Odd.

[katytc]

Hi,

1 in 4 have joint pain, thats a large percentage so why do only some medical staff have knowledge of this. I'm going to print this off and take with me.
I just don't want to be diagnosed with something I don't actually have.
I have a weakness and chronic pain on my left side that is why it's difficult because both sides are now affected.
Can I ask if anyone already had a weakness in the area that is now affected? Mine seems to be mirroring the bad side, if you know what I mean? It's hips downwards for me no pain in wrists etc. xx

[RevCat]

Documentary evidence - I can't find anything more than I linked before that's scholarly; but CRUK lists joint pain as a 'common' side effect of Tam here: http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/tamoxifen#common

cf the Tam packaging that makes no mention whatesoever of this... MacMillan and BCC leaflets don't mention it either

Hi Crabbit - welcome to achey land! Will be good to know how how the APS goes for you.

[Crabbit]

Hello Revcat,
while I barge in here! I live in Fife. Have been on Tam since October. At present I don't have as much stiffness in my knees and legs. My fingers are sore and clicky, my ankles and lower leg are swollen.

Funny but the pharmacist accidentally gave me APS today ( usually I'm generics) and it has the most comprehensive list of SE's including depression and swollen ankles, confusion, cataracts. Good for them, they seem to acknowledge it all vs generics and wockhardt.

So I'll see how I get on.

Carolyn xx

[Guest user]

Hi Katy - my bloods came back negative for the RA factor (which is why my GP dismissed it in the first place) but they still think it is and apparently that is a better outcome than if I had the factor.
Alex - will be interested to see if the pain comes back when you restart the Tamoxifen.
People at work have commented that it might be the weather that affects me! Maybe it is the water though!!

[RevCat]

Well now, it seems we're all in Scotland... so what's in the water up here?! Joke.

Both the breast clinic at Glasgow Wstern and my GP say it's a known side effect... maybe there's some sneaky research going on in Glasgow and no one has told me?

Alexc your ankles sound like mine, I also get coccyx ache, both wrists and thumbs and now several fingers. Compared with Katy I get off lightly for pain I think.

[alexc23]

Hello all

As most of you have already mentioned some of the side effects of tamoxifen a lot of us experience can tend to get dimissed / disregarded as not actually being down to the tamoxigen. Well all I can say is that having been off it for the last 5 weeks due to my reconstruction op i havent been experiencing
* stiff ankles (duck walk in the morning)
* As many lower back aches (was mostly every day before)
* fuzzy head
* waves of fatigue (especially early morning)
May be coincidence but if they come back once I restart tamoxifen (and even with these I do intend to restart) then at least I can tell them where to stick it if they tell me its coincidence. And on the bright side at least if they do come back then maybe I can look forward to them going again in 3 years time

Good luck all with your SEs xx

[katytc]

Hi Beverleys,

Did your blood test show you had RA? I am waiting to see rheumatologist. Really glad you are feeling better and steroids have made a difference xx

[Guest user]

Hello all
It's interesting how different people are given differnt diagnoses isn't it? I saw the rheumatology specialist nurse last week for more steroid injections and I asked her definitely if it was RA, she could only say 'if the doctor says it is, then it is' (the doctor said it was RA rather than a bad SE just from investigating my joints and symptoms) but went through my blood test results with me. I feel so much happier now I've had the jabs in my shoulder and my ankle and wish I'd had them earlier. I've been on max dose ibuprofen for nearly 8 months whilst waiting to be seen, and am so pleased to not have to take them at the moment. I have an appointment with my GP this friday to discuss taking the long-term medication - I just hope they're right and it's not a SE of tamoxifen that they're not acknowledging!
I am in Edinburgh and being treated at the Western General.
I watch this thread with interest to see what the difference is in treatments/diagnoses. Hope everyone finds pain relief soon!

[katytc]

Another thought where is it well documented ? How does your GP know about it when mine doesn't and even BCN says it's not !! I think I'll come and see your GP RevCat haha! xx

[katytc]

Hi RevCat,

How good is that, that your GP recognises that tamoxifen is a probable cause of your pain. I feel as though I am going round and round in circles hitting my head against a brick wall, famous last words being "it's definitely not the tamoxifen".
I have been taking tam for approx 9 months, only had this severe pain for around 2 months, it is extremely debilitating. I don't feel as though I have r/arthritis, I feel it is directly due to the tam.
I am in the Perth & Kinross area and have lived here for 20 years, before that the East Coast.
I'm sorry to hear that you are now having ankle pain hopefully your concoction of pills will help! My pains are both big toes, both ankles, both hips and groin pain, it started firstly in my ankles, then toes hips and groin together. I'm shaking my head as I'm writing this feel like such a moaning minnie, truly I'm not I have always been the glass half full person! (just as well methinks)
So good luck to you RevCat hopefully this will ease your pain, please keep us up to date with your news and how you get on. xx

[RevCat]

Hi ladies - thanks Katy for your message.

Bit of a general update - joint pain getting worse, more fingers joining in and now my left ankle 😞

Saw my GP today who is brill. She said, oh yes, that's a well documented side effect of Tamoxifen.... I am SO lucky. Anyway, she has started me on 400mg ibuprofen three times a day along with 20mg omeprazole (losec) for the se's of the ibruprofen (a pill for the side effects of the pills for the side effects of the pill). She says the anti-cancer benefits of ibruprofen are proven, so she is happy for me to take it long term if it works as the benefits outweigh the risks.

So, just to clarify what I am swallowing daily:

20mg Tamoxifen (currently Wockhardt, have had Generics)
10ml (~2000mg active ingredient) extra high strength cod liver oil including 100% RDA vitamin D
1000mg star flower oil
400mg x 3 ibuprofen
20mg x 1 omeprazole

So far there is no effect from the star flower oil on the flushes, indeed they are more evil than ever!

Just a random thought - where are we all in the UK? Is there some kind of regional influence at work here too? Or am I just nuts? Someone told me recently that the central belt of Scotland has the highest incidence of bc in the UK - don't know if it's true but it's curious (I realise that as I'd lived here less than a year at dx I brought it with me, but even so...)

[katytc]

Hi RevCat,

Hope you get on fine today at docs, please let us know xx

[katytc]

Thank you RevCat and feeC, kindness does wonders for the spirit!!
RevCat, Sooooooo glad your itchy is going, it's extremely annoying.
feeC Sorry that you are struggling with your running, difficult times, when you love doing something and find it's getting harder and harder to do. It hurts not only physically but mentally.
I feel that tamoxifen may not be considered as with this thread there does not seem to be many of us that are experiencing this pain.
feeC, can I ask how they came to that diagnosis? did you have blood tests etc?
Quiet day today, it's pouring with rain here anyway, take care all xx

[Guest user]

So sorry to hear of your treatment Katy....How can they be so callous...After all the research into pain how can Gps not recognise the importance of a patient history.As I said before my GP told me to just go away and grow old gracefully( or something similar). We are all sending you strength to get through this. I am lucky that the consultant I saw was sympathetic and listened to me. I was taken aback yesterday however to receive a phone call from a research nurse who asked if I would take part in a research study for newly diagnosed Rheumatoid arthritis patients...this was a surprise to me as I was not aware that I had a diagnosis and am really, really hoping it is not so!! I am still plodding on with the exercise although the change of gait due to sore joints has caused me to have a very, very painful hamstring and Achilles tendinitis...I find it so demoralising to drop behind all my running friends and have no motivation any more. They are all entering events that I have no idea any more if I can finish. It looks as though I shall have to pull out of my big "finished chemo" challenge on the 17th March..The mighty Deerstalker.I know this sounds so self pitying when others are struggling to get out and walk but running is so vital to me socially and psychologically. I have maintained my fitness over the last tough year and thought that was the worst..hey ho!!!

[RevCat]

Katy I am so sorry you had such a rubbish time with your doctor, and Vercors, you too... it definitely should not require secondaries for them to treat you properly.

From what you say it sounds that I am really lucky the doctor I saw was a former rheumatology doctor who was totally not fazed by my joint aches/pains etc. Evidently she is a specialist breast care physician, working alongside the surgeons and bringing know how with her. Also I am lucky that my pain levels are much, much lower than yours.

Pleased to say my skin has finally stopped itching, even if joints are the same so far. Cod liver oil mixed with orange juice tastes marginally less foul, even if it wrecks the juice! Jury still out on the star flower oil and flushes.

Hope you get a sympathetic rheumatologist Katy. Take that research stuff with you if you still have it... and I know there is also rheumatology research on AIs and joint pain, if not explicitly Tam and joint pain.

I have a suspicion that in a few years this SE will be properly recognised... but it doesn't help you.

[katytc]

Aah thank you vercors, I am very glad that your doc is good now but it shouldn't take in your case secondaries for that to be the case. You are already vulnerable to a certain extent and it's easy to be knocked down by someone's total lack of interest or care.
I forgot to say that the doc said that the rheumatologist would probably be able to rule out tamoxifen or not, through their experience and expertise xx

[vercors]

Some GPs are right out of order. Mine was awful and now that my secondary diagnosis came, she felt really shippish (spelling?), she has changed and become very nice suddenly.
Big hugs, glad that your complaint was taken seriously.

[katytc]

Well, had a very bad day yesterday, saw the doctor one I'd never seen before and she basically was saying the pain was in my head, take these painkillers and think POSITIVE. Came out totally distraught, spoke to my daughter who told me to go back in and make a complaint. Went back in an emotional wreck and spoke to the practice manager (when I could get myself together to speak). She was excellent and her jaw dropped considerably when I told my story, very, very sympathetic, said she would speak to doc and head of practice and that it maybe taken further as a official complaint. (Don't want that to happen) and stated how appallingly my treatment had been. She made an appointment with doc I know for this morning, went home drained and feeling devastated.
Went back this morning, he apologised for my treatment yesterday and actually listened to what I was telling him. So different painkillers and an appointment to see rheumatologist, he said sometimes blood tests can come back fine but it maybe a different type of arthritis, so came away quite happy, hopefully these painkillers will take the edge of this pain.
As I have already said I deal with chronic pain daily and I know if something is sore, I waited 6 weeks before even going to docs because I thought the pain would go away, so I do not run to the docs ever with any little ache or pain. Yesterday I felt stupid and I was being patronised by someone who had little knowledge of chronic pain conditions, all she had to do to finish it off would have been to pat me on the head Grrrrrrrrrrrrrrr.
Today I'm much stronger xx

[RevCat]

Katy, hope you got on alright at docs... glad the blood tests were clear for you.

Shazza bazza thanks for your input, that's all helpful. I am interested in exercise helping... I attended a rehab exercise class for most of last year, walk at least 2 miles a day, regularly hill walk etc. and the joint pains developed ~ 6m after starting Tam. Compared with Katy I am lucky, my pain isn't anyhwere near as bad as hers. I am also lucky that my Drs accept it is a side effect, which helps I think.

A cure for flushes... are yes, you could make your millions if you found that!

Hope everyone is OK and not too sore.

[shazza_bazza]

hiya all
I have been taking tamoxifen since start of jan initially felt very sick,but after advice from "the ladies" i take it with food and have been much better. I take the wockhardt brand,i suffered from aching joints (well still do) but they seem to have calmed down a lot, i don't know if it's because I'm getting more used to them or because i have been able to increase my level of exercise,i swim and walk a few times a week and have been going to a pilates class run by a physio for the past six weeks which has really helped me to be more flexible and supple. I still have pain but it is more manageable a hot water bottle helps but clashes a bit with the hot flushes.... now if i could just sort them out.
Hope you feel on top of things soon
take care x

[katytc]

Blood tests all satisfactory, just me that's not. Have another appointment later today. xx

[katytc]

RevCat, have not heard of yellow card before but will fill in. I had terrible itching and flushing recently was allergic to painkillers, could you be allergic to the cod liver or star flower oil?
I had a busier day than usual yesterday and it has been bad, up half the night, finding it difficult to deal with the pain. I already have chronic pain from an unrelated issue but pain on top of more pain is just getting a bit much, so I don't think it was anything to do with the different brand of tam just me doing less. xx

[RevCat]

Hi all,
ooh that's curious.... just had an email following the 'yellow card' I sent in asking me for more details. Ten days into cod liver oil and star flower oil I have itchy hands and worse flushes than ever... the joint pain is the same. Am told it could take a while for the oil to take effect... Haver you put in a yellow card? If not maybe you could go here http://www.yellowcard.gov.uk and fill one in... the more evidence the better.

Glad Generics is better for you; I think Wockhardt is worse for me but Genrics not great... not had APS yet...

Just drowning in sweat as I type... deep joy!

[katytc]

Hi all,

Anyone noticing any differences, those who have stopped the tamoxifen and those taking supplements, vitamins etc?
I have taken all 3 brands now of tamoxifen and the Generics brand seems to be the better. Still in pain but the intensity not as severe. I am not doing too much though so I don't really know if it's all down to me limiting myself.
Please let me know how you all are, take care xx

[RevCat]

Hope things go well for you Fee and Samlee.

I have one of those jar opening thingies too... the bigger challenge is trying to open bags/packets, can just about do crisp bags but otherwise resort to scissors. What an old wreck I am!

[Guest user]

Hey SamLee! enjoy your toxic free ride...I cannot wait for that day of no poisons apart from the red wine of my choice! Your onc sounds very sensible....it is so hard to know what is causing your symptoms when there is clearly so much potential for damage from all different sources and so much anecdotal evidence as well. I have stopped the tamoxifen as from today and so shall see how I get on. The bought forward oncology appointment should be in the next couple of weeks and so it maybe too soon to tell but it is a start. Either way hopefully there is an answer. Thank goodness for this forum otherwise I should still be struggling with my GP's advice to accept things and just slow down...after all I am ancient (see age on previous post!!).

[SamLee]

Hello All,

Have been reading this thread with interest as since I started with Tamoxifen in October last year have been plagued with side effects but because I have been having Herceptin as well no-one has come down and attributed to symptomns to one thing or another.

But today I went for my last Herceptin and appt with onc. In the end I didn't have the Herceptin because of a dodgy echo (but that's another story). As its the last one she decided to call it a day.

With regard to the Tamoxifen I explained about the side effects (joint pains amongst everything else). Her advice is that I stop taking it for 6 months and as she said "get everything out of my system" and then we either try the Tamoxifen again or AIs. So clearly if she is suggesting this I am working on the basis that it isn't going to do my long term survival any damage or she wouldn't have suggested it. This suggestion came with no prompting from me.

So maybe feeC you should take your rheumatologists advice and take a break for a month and see how you go.

Me, I am ecstatic today as for next 6 months will be going drug free, which after nearly 18 months of treatment is just the best news ever!!.

Sam

[Guest user]

hello all
beverlys you have all my sympathy...I hope though now you have a diagnosis you can get some specific relief (apart from the wine which I found helps a variety of ills). Thanks for all the other comments, it is so interesting to see how everyone else is faring. and to think I thought the chemo was the hard part!! My feet are also especially bad in the morning and my hands are really swollen. Just an update so far...after my last comments I got in touch with my chemist who has dismissed out of hand any link between tamoxifen and sore joints and refused to swap brands, the breast care nurse also backed this up in a phone call and said I should go to see the onc to be told direct.Helpful huh!! Meanwhile my feet and hands have got considerably worse and the weight is piling on!! However a ray of light on Monday on a visit to the rheumatologist who after reviewing all the symptoms and time line etc said that I was a conundrum but it was significant that the symptoms appeared a month after starting the Tamoxifen. Have had Xrays, bloods and awaiting an MRI of my right hands to help diagnosis. He suggested that I consider at some point stopping Tam for a month and then re-starting so we can see definitively.I have rung the BC nurse with this and she now says that the chemo is much more likely to be causing this (despite having told me last month that FEC did not have an effect on your joints) and that everyone is different in their response. I will go down RevCats route I think and try to gather some evidence before seeing the onc, my appointment is being bought forward.I think that stopping the tam is a good plan as it should rule it in or out once and for all. From the post by lostinfrance she saw a reduction in symptoms after a week! I am definitely going to start the fish oil...I have some liquid stuff that my daughter needed a while ago. Thanks for all the support and ideas...it really really helps. Stay smiling ladies...I did when referred to the OT dept aged 47 for a gripper to remove the tops of jars...hey ho!!

[katytc]

Hi,

I am having my blood tests on Thurs, it's to measure for imflammation, if it does show any I will be sent to a rheumatologist. Earlier in this thread beverleys had the same diagnosis, is it a co incidence?
I just don't know, please keep posting, will let you know how I get on xx

[RevCat]

Ah, anxious, it's clearly being 49 that's the problem....! How silly of us not to know that.

Was it glucosamine your onc mentioned?

I have just bought seven seas extra high strength cod liver oil liquid (ugh, shudder) which has 100% RDA for vitamin D too. She said I needed 100% RDA vit D as well as fish oil. Also starflower oil which she recommended for hot flushes... she confirmed it has no phytoestrogens and if nothing else is good for hair and nails!!!

[anxious]

I had my yearly appointment with the Onc and mentioned my aches and pains. The aching being more troublesome than the pain,especially my arm on the side of my surgery. She said no alarm bells were ringing and the symptoms i was describing resembled rheumatic.Said my bone scan last year was all clear although as we all know a year is a long time and things can change. However that was a very stressful time for me so i'm happy to go along with her confidence. She said to try cod liver oil or that other one that begins with a G,she said Tamoxifen can cause the body to suffer symptoms that are usually suffered in older people,ie i'm 49 and somertimes feel 89.I will keep an eye on this thred as it's nice to have conversations with like minded people who are able to understand.x

[RevCat]

Well probably nothing you don't already know, but the doctor I saw today - a woman of middle years and formerly working in rheumatology - told me to take max dose fish oils (any sort) and max dose vitamin D, which research evidently shows is beneficial in peri-menopausal joint pain which is similar to Tam pain. At least she didn't shake her head and dismiss it, indeed she had that 'yup, everyone tells me this' kind of look on her face. Nolvadex is no more 😞 Didn't ask about the liquid stuff (forgot) but now have to raid the herbalist nextdoor to church for gallons of codliver oil etc.....! She also said you can get slow release forms of anti-inflammatories to take at night as the pain tends to be worse in the morning (or it is for me)... don't know if any one has truied that route?

Sorry I can't be more use.

let's keep each other informed of any useful insights though.

[RevCat]

Thanks Katy, and sorry about the bum steer... will report back tomorrow.

[katytc]

Just back from docs and he said he had no problem prescribing Nolvadex, so popped it in computer and zilch, so said he would contact pharmecologist and get back to me.
That will be right then that it is not available, thought my problems maybe over!! (sad face)
Go back on Thurs for blood tests and have been given stronger painkillers, please let me know what happens tomorrow RevCat, and thank you for all your searching xx
PS anxious can you let us know too.

[RevCat]

Thanks anxious - obviously I should have dug a little deeper.... seems a bit daft that the research roughly coincides with the end of Nolvadex being available in the UK. A bit more googling and I found an old thread on here about it http://share.breastcancercare.org.uk/forum/nolvadex-d-how-could-we-get-it-back--t25288s24.html Rats! Thought I might have found a soliution.

Anyone had the liquid form? The old thread suggests less SEs maybe?

Katy, so sorry for raising hopes falsely. What a twit I am.

[anxious]

I have been reading this thread with interest as i am suffering aches and pains and am due for my yearly check up with Onc tomorrow. Unfortunatly Nolvadex is no longer available as i believe the patent ran out and now the cheaper brands are able to make it,i was on Nolvadex originally and can vouch it was brilliant.
Wishing you all the very best in the search for your answers and the information so far

[katytc]

Thank you so much RevCat, am off to docs in a couple of hours so have copied this and am taking it with me.
The pain is very bad and I really don't want to take painkillers if changing to Nolvadex is all that's needed. xx