Leg Cramps and Tamoxifen

[Kip]

Thanks Helena

[ladybowler]

Kip

Just sent you two private messages with the two pages of the Teva leaflets.

H x

[ladybowler]

Kip

What a pain, sounds like people need to be complaining to the GP surgery about the problems they are having otherwise it will not change.  I am sure it is totally wrong to put the leaflet of another brand into a packet!!

What I will do is copy the leaflet from one of my packets and post it on here for you.

Honestly these people, when will they realise that we are the experts in this, we are the ones taking it and know the difference it makes when brands are swapped!!

H xx

[Kip]

Hi Helena, thanks for the information.   I have been back to the pharmacy today, unfortunately it is tied to our doctors practice and lots of people in our village are experiencing problems with them.  I double checked with them and I have Teva pills in a Myla box?   He said he didn't have enough Myla to give me so split them, I corrected him on this as he gave me all Teva just put them in another box, I asked about the leaflet which he then gave to me but this is a Wokhardt leaflet as he doesnt have either Teva or Myla leaflets!!  I just want to keep to one brand for a few months to see if the side effects get any better and its making life difficult when they are muddling them up.  I have another perscription due on 9th January and will see what comes then and will then make sure I ask up front for the same brand.  He didn't seem totally convinced that different brands would be any different... he would if he tried them!

Watch this space...

Kip

xx

[ladybowler]

Kip

With regard to the tablets from your pharmacist, I am on Teva and have been since I started in November 2016.  They always come in the Teva branded box.  However I have experienced previously where tablets have come in a box with no leaflet and this is usually because they are mixing brands where I would imagine that they do not have enough of one particular brand of drug. 

It might be worth speaking with your pharmacy explaining that you are on this for 10 years and need the consistency of a brand, as I understand that although the components of the drug are the same it is the coating that can make the difference.  I know with mine the Teva, which comes in boxes of 28 and always has done, it costs £13 per packet whereas the generic brand is £3 a packet.  My argument is that I am on this for 10 years and I need to ensure that I am taking a brand that causes me the least side effects, fortunately my pharmacist agrees.  I also ensure that when I have put in a prescription request I let them know so that they can make sure that they have them in stock.

I know it does take several weeks to get used to a drug and I had a variety of side effects in the early 2/3 months of taking it, however they did settle down.

I hope this has helped.

Helena xxx

[Kip]

Hello everyone, i have been reading your posts with great interest as i am having issues possible related to tamoxifen too.  Heres my history:

48 yrs old, diagnosed April 2018, grade 2 IDC. Had MX no recon in May with SNB, 2 nodes affected and 1 micromet.  6 x FecT chemo which finished 24 Sept, ANC clearance Oct (remaining nodes all clear), 15 x radiotherapy (finished 19th Dec 18).  

I am now on Tamoxifen for 10 years.  I was suffering with heavy legs towards the end of my last chemo but nothing lkke now.  I have been on the Tamoxifen for about 6 weeks and as well as nasty night sweats i have a achy legs, worse on outside of thighs and down the backs, knees, feet hurt when i wake up.  Hips ache, sometimes just one , sometimes both.  My butt cheeks ache like ive done 1000 squats somedays and lower back can ache.  If i sit for a period of time i am so stiff to get up.  Today elbow jointz ache too and fingers stiff.

My Onc nurse initially said. Its the docetaxol chemo still affecting me and suggested taking magnesium and zinc which i am doing.  I also try epsom baths, i get some relief but then some days its so much worse again.  

I read your posts about different brands and my first month was .Wockhardt this month the box says "Mylan" but the pills inside on the packets say "Teva UK", is this the same company?  I dont trust my pharmacy as there is no leaflet in this second box and they have changed the wording on the box to state 28 pills instead of 30 a d have cut 2 pills of the end of a packet.  I am just trying to keep note of which brands feel better, if any, and am confused.

Any advice would be fab, sorry for long post!

Kip

[FionaAd]

Ps - I also take Magnesium to help with the cramps

[FionaAd]

Hi, I have been on Tamoxifen for 2.5 years now. I also had awful aching legs (thighs) - mainly at night. Sometimes cramps too but I think this is separate.
Someone in another forum recommended taking Clarentin (Loratadine) each day. Yes this is usually for sinus or allergies and it sounds bizarre, but it definitely works for me. Takes a few days to kick in but now my pain is 80% gone.
I almost didn’t believe it so I tried going off it, and within a few days, the pain was back.
There are a few studies online if you google it showing that it can aid with muscle pain / DOMs.
Try it out.

[Sinecm]

Hi all, I am on tamoxifen for 7 years now and the side effects are getting much worse. (To many to mention)The leg cramps are unbearable... I’ve tried everything and nothing seems to work. I have spoken to the oncologist and they are considering changing my meds which would mean an injection every month to turn off the ovaries and a daily tablet. Has anyone ever had this mentioned to them before I’m 41 and I don’t know if I’m ready for a full blown menopause.

[ScarletBea]

For me it's related to the brand, at least I was having a lot more cramps (and general leg pain) when the chemist gave me a different brand to the normal one I was taking.

Now my GP actually includes the brand in the prescription - Mylan is the best one for me.

Anyway, I think these things (side effects) come and go without rhyme nor reason, hehe - I've been on tamoxifen for just under 2 years.

[Alibobs]

Hi I know this sounds daft but my Aunt swears by putting a bar of soap under her bottom sheet in bed!!! Says it stops leg cramps!! Might be worth a go!!

[hdl777]

I have been on Tamoxifen for about 2 years. I started getting horrible cramps in my legs at night. I even had cramps in my feet one night that were extremely painful. I started working out - crossfit - about 5 months ago to get my strength back. Anyone else feel like it's hard to regain muscle after chemotherapy and being on tamoxifen? Anyhow, a few months or so ago, I stopped having leg cramps. I can now stretch in bed without cramping up. I know that intense exercising is what helped me. It was a pleasant surprise.

[lpeart]

I have been on Tamoxifen for about two years now. My leg cramps have been getting worse, and last night's pain was excrutiating. It started in the front of my right leg, but then quickly became pain in both legs, from halfway below the knee down to my toes. I was afraid to try to walk anywhere because I thought my legs/feet would give out. It eventually went away, but then I was left with full body shakes for about 10 minutes.

My leg pains usually start after I've gone to bed, but sometimes they hit in the early evening when I'm stretched out on the couch. 

I am going to have to talk to my doctor at my next appointment. If these leg cramps continue, (as well as hot flashes all day/night) I might have to decide if it's still worth it to continue taking the Tamoxifen.

Has anyone else stopped taking the medicine?  Any thoughts about stopping the medicine?

[Nippy]

You will need to ask the Gp to state the brand as pharmacist will just give you what they have in! Worth talkinh to Pharmacist first and worth sticking to a brand that you expreience less side effects with. Hope it goes well and you experence less side effects .

[Jill1998]

Sounds quite extreme - mine was most definately cramp in the calf muscles - if it continues may be worth getting it checked out as it may not be related .

[psb54]

I think I have what some of you are referring to. This is what I am experiencing: I have been awoken twice now, with one leg and then the other. The experience was exactly the same with both. My whole leg ached from where it attaches at thigh to body and all the way down. It is a very non-descript pain and if I had to tell someone where the pain is I'd have to say my whole leg. I know what a cramp is and the normally contraction of one; however this pain is escrutiating, like a regular cramp, but I can't find any particular place or muscle that is cramping. Has anyone else had this. I am thinking it has to be the tamoxifen since I haven't changed up anything else. I began Tamoxifen in January, in February went on an aromatase inhibitor (that almost made me explode, it felt like), so back on T since March. My first whole leg pain was my right and was about mid June. The one, last night, mid July, was my left leg. The pain is so bad I get nauseated with it. Once I get up and stand on it, it starts diminishing, but it is very scary. Again, I can't find the cramp or where it is coming from, I just feel the pain of a cramp througout my whole leg. Does this sound like any of you? TIA

[AggieTravelerToo]

I just refilled my tamixifen prescription and the first month the brand/mfr was Mayne, no leg cramps. The refill brand/mfr is Mylan.I just started getting severe leg cramps while sleeping and during the day hip joint pain as well as ovary cramping. Im going to ask for a different brand/manufacturer next refill. I take liquid potassium and pill form magnesium calcium vitamin d and k supplements daily. Doesn't help with my leg cramps. I will try the tonic water before bed.

[anujlovepatriarch]

Hello,

Cramps are deadly I know as I have experienced this several times before. But there's something which literally gave me relief and they are sea salts. Nyassa is the company which sells the amazing quality of bath salts which can be used for getting rid of muscle cramps. To help you out I am attaching a link to buy bath salts online 

http://nyassabathandbody.com/nyassa-under-the-ocean-fragrant-bath-salt.html 

[Erinkeller8]

I too am on Tamoxifen and have leg cramps sometimes both legs from butt to heel and the pain is so bad I can't move and feel like I'm not going to survive. The only thing that works for me is, I have eliminated all sugar from my diet. When I slip, I get the cramps again. I'm on lots of magnesium and potassium which doesn't help if I'm eating sugar.

[farmerjen]

Hello all.

I too have been suffering severe leg/toe cramps at through the night and early morning.  I have been on tamox since May 2017.  I never experienced such cramps before taking the tamox.  I spoke to my chiropractor today and he gave me calcium supplements to take before bed.  I pray it works!!  I think we can all agree we have and are dealing with enough and don't need the cramping!  I'm sorry to hear so many have dealt with this but I'm glad i'm not alone in this!

[Jujunew]

I’ve been on tamoxifen for 6 months now and thought I’d got off quite lightly with regard to side effects but suddenly am now suffering from really horrendous calf and toe cramps during the night - to the point that my legs are still sore the next day!  Thank you to everyone contributing to this thread - hopefully some combination of the suggestions will help to ease the problem.  

[DiscoD]

Hi all.

I tried the magnesium tablets and spray. I take the magnesium phosphate when I can feel a bad bout coming on and it does work eventually.

The magnesium spray is ok but it's very oily so it's putting me off a bit.

The tonic water is due to the quinine in it and it is supposed to help but wasn't doing anything for me. I spoke to my oncologist who prescribed me actual quinine tablets 200 mg to be taken on a night. Apparently you have to be really careful with them as there are some not nice side effects (something else for us to look forward to). They seem to be helping but are giving me bad tummy cramps in the day.

I have now asked my doctor to change my brand of tamoxifen as I honestly think it's worse when I have mylan brand. I've done a week now on the new brand and 3 weeks on quinine and touch wood I've been ok. Although I haven't taken the quinine for a couple of nights due to the tummy pain.

It would be interesting to see if we're all getting different brands if it is related or not.

Good luck everyone. Hope things improve. X
Xx

[Trvler]

I am coming up on two years on Tamoxifen. (Started Jan 1, 2016). I have had horrible arm cramps. But they seemed to have eased up lately so yeah! 

I have some tips for those suffering from muscle cramps. I take 800 mg of magnesium a night which I take for constipation but some say it helps with the muscle cramps. Just be sure to start off with a low dosage and work your way up or else be sure you have access to a bathroom. 

2) Eat bananas. Potassium helps muscle cramps.

3) When you feel a leg cramp coming on, instead of doing what comes naturally and curling your toes outward, curl your toes upwards towards your body. 99 times out of 100, this stops them dead in their tracks. 

[clarehampson]

Hello, 

So sorry to hear about your cramping. I empathise. 

I've been on Tamoxifen now for 3 years - and in the past 6 months cramping leg muscles have become an increasing problem. I used to be very sporty and am finding this difficult to deal with. Just wanted to say that prescribed Quinine tablets have stopped the cramping at night but my legs feel heavy and sport options are diminishing. It's hard to know whether this would have happened anyway as I'm menopausal.

Try the Quinine perhaps.

Best wishes,

Clare  

[ladybowler]

DSLayton

I dont know if this will help as it sounds like your cramps are extreme but I have read on here that ladies have been taking a glass of tonic water at bedtime and that seems to have helped them. I would imagine that you have probably tried this, but I thought it might be worth posting to you about it.

I sincerely hope that you are able to get this sorted

helena xx

[DSLayton]

09-09-2017 08:02 PM
I took Tamoxifen for 5 yrs back in the 2000's. Since then I have had terrible cramps in lower legs, ankles, and toes. I have tried every remedy that anyone has posted - with no relief. I went to a Neurologist a couple years ago and he ran every test on me including an EMG and all that were negative. He put me on Gamapentin and Baclofin and the cramps stopped but I was a walking zombie, confused and could not function, so I came off the meds. The cramps are so bad that I asked my medical dr to put me back on Gamapentin and I am starting with 300 mg about 1-2 hrs before bedtime. I have been on it for the last 2 nights and the cramps are really bad. My husband has to get me up and walk me while I shuffle my feet until I can put both feet flat to walk. My blood levels are always perfect. If anyone has any suggestions or info - PLEASE share with me. Thanks

[DSLayton]

I took Tamoxifen for 5 yrs back in the 2000's. Since then I have had terrible cramps in lower legs, ankles, and toes. I have tried every remedy that anyone has posted - with no relief. I went to a Neurologist a couple years ago and he ran every test on me including an EMG and all that were negative. He put me on Gamapentin and Baclofin and the cramps stopped but I was a walking zombie, confused and could not function, so I came off the meds. The cramps are so bad that I asked my medical dr to put me back on Gamapentin and I am starting with 300 mg about 1-2 hrs before bedtime. I have been on it for the last 2 nights and the cramps are really bad. My husband has to get me up and walk me while I shuffle my feet until I can put both feet flat to walk. My blood levels are always perfect. If anyone has any suggestions or info - PLEASE share with me. Thanks

[Carolyn52]

Hello. .I take letrozole which is another hormone and find a small glass of tonic water before bed time helps the night cramps ..worth a try. .
Xxx

[Lianedorato]

I just started Tamoxifen in June. I have wicked lower leg cramps and my toes curl and it's painful! Wakes me up from dead sleep! Then it takes a while to get rid of them and it usually happens at night but sometimes out of nowhere during the day! Also occasionally same thing happens in my hands! Never had this before taking that drug! I'm a nurse. One physician said to take Claritin, calcium and magnesium. I just started that so we will see!

[DiscoD]

Out of interest what brand of tamoxifen are you taking at the moment. It's just that I've been monitoring my cramps as I'm the same sometimes I can't walk and I think I've narrowed it down to mylan brand. I also now carry magnesium phosphate tablets as they do really help.

[Agata]

I am on Tamoxifen since last November. Legs cramps started at the beginning of June. Last night was terrible and i could barely walk this morning!!! I tried to drink tonic water, i take magnesium, calcium, and eat bananas...

[Carolyn52]

Crissy
I'm on another hormone but have you tried a glass of tonic water before bedtime ...it does help the cramps for me.
Xxx

[Chrissy70]

It's horrible sister xxxx

[Chrissy70]

I have had leg cramps since I have been talking tamoxifen.. I'm asleep and it wakes me up like now, I am chatting to you and my toes are curling up...so painful

[Mak1009]

My Dr. said it takes 30 days for the Tamoxifen to leave your system.    I was on for 5 months, and its been 22 days off.   The severe leg cramps are better, although the ankle, toe cramps are still happening.   I sleep with a heating pad close by, and that relieves the cramping.

[Jill1998]

It is definitely a side effect of Tamoxifen,I never had these cramps before I started taking it .

[Mak1009]

My dr told me also its not from tamoxifen. But it HAS to be from the meds.

[Mak1009]

What is the ratio of bicarbonate to water? I have been on tamoxifen for 5 months and can't take the leg and foot cramps. My dr is not convinced it's from tamoxifen.

[KatyG]

I thought I would post an update with my bicarbonate of soda regime and leg cramps.  It is still working, although I have had the odd night (maybe twice a month) when I've woken up with cramp.  I can usually tell when this is going to happen as the cramps start in the early evening.  If that happens I just take the bicarbonate as soon as I feel them starting and also take some bicarb to bed with me and then drink it at night if they start.  It works very quickly.

I've told my doctor what I'm doing and they at least didin't say I shouldn't continue. I was told that one of the common reasons for women wanting to stop tamoxifen treatment was because of leg cramps - certainly I was getting desperate!  

I have altered the time I take my tamoxifen, just in case it shouldn't be taken at the same time as the bicarb.

Anyway the bicarb has revolutionised my sleep and I feel so much better for that!

I hope this is of help.  If anyone else tries it and finds that it works for them, please do post a reply.

[MarieJ]

I was taking a hot water bottle to bed every night or when I am sitting down watching TV and I found this helped. The last couple of weeks it has been hot and not used water bottle and the cramp came back and I was in tears today. Will certainly try bicarbonate soda or tonic water JackyM

[JackyM]

Katy, your cramp issues sound exactly like mine and started almost immediately after starting Tamoxifen last year. I'm going to try bicarbonate of soda as you did and hope I can get a full nights sleep soon.

[Jill1998]

Thanks Katie,def worth a try ,I have been having nighttime cramps for last couple of months(on Tamoxifen for 7 months ).

[KatyG]

I have been on Tamoxifen for about 4 years now and have been suffering very painful camp of my toes, feet and lower legs, mainly at night but sometimes during the day or evening (I once had to march round and round the table at a board meeting at work to try and stop the pain - somewhat embarassing!).  Often cramp wakes me up several times a night.  

I followed all the NHS advice about stretching (ran my feet over a tennis ball, did the most weird contortions to stretch out the top of my feet and front of my legs (I seem to get cramp in muscles I didn't know existed!), but this wasn't very effective.  However after meeting a retired doctor recently who had suffered from chronic back pain following a major spinal injury, I decided to try the remedy that he has found  relieves  his back pain - bicarbonate of soda!  I've been drinking a teaspoon of bicarbonate of soda in a small glass of water every night before I go to bed.  Blooming marvellous!  I've had no foot/leg cramps since I started, about 10 days ago.  I know it is early days but I just thought I had to share this with those of you who have similar problems.  If you google bicarbonate of soda and leg cramps you will see a few posts and articles on this.  You should checking with your doctor first to make sure there are no reasons why you should not take it - it tastes quite salty so may not be good if you have high blood pressure.  It's allot cheaper than the gorgeous, but expensive Fevertree tonic water which unfortunately did not work for me. .

[D-D]

I started getting leg cramps almost immediately after going on tamoxifen.  My onco put my on Calcium supplements - 500 mg twice a day & if I skip I can tell almost immediately.  It definitely helps a lot but pills must be taken with a meal in order to be effective. 

[Jo Narug]

Stopped taking tamoxifen (with doctor's suggestion) due to servere joint & bone pain, leg cramps, and other numerous side effects.   The odds of reoccurance is not that high for DCIS, I am 76 yrs. old and this tamoxifen is even worse than the radiation treatments I had.  Leg cramps keep me up at night, very servere and therefore up every hour or so.  So tired, it is hard to focus or function during the day.  and of course with the other joint & bone, nausea symptoms,  life has no quality.  Doctor tells me that as lone as you were on tomoxifen, that is how long it takes for all these symptoms to go away.  For me, its been a month off now, and still leg pain (cramps) have not let up.  I keep dehydrated, eat 1 bannana a day, still no relieve.  Will try to find tonic with quinine today.  Any more suggestions?????

[Rechel Rose]

Hello all of you! Leg cramp is a very popular and painful disease for all of us. It is so irritating time when leg cramp starts. I have a serious leg cramp problem. One of my friends from the USA suggests me for using Limb Bar. It is a specially formulated mineral shop, which gives me relax after using it within 48 hours. Try it, hope it will help to relieve your pain.

[Ani64]

Ive been with tamoxifen for 3 years and some months ago started with pain in my legs hips etc. My phisitians said tam was not the cause. Finally I asked my oncologist from USA (I live in South America)and he suggested me to stop takin tam for 15 days. The pain dissapeared. Now Im taking tam again for 10 days and my pain is again. I cant be sitting too much time because it aches. I also been through xrays, etc since I thought sonething was going wrong with my bones.

[mjsuprmom]

 I don't really have bad leg cramps....every once and awhile I get them but not that often. I have been on Tamoxifen for almost 2 yrs in August. Work out 5 days a week, and last weekend biked 2 days in a row. Now I seem to be screwed....both my knees have been sore and keep swelling by the end of the day. My husband is even in shock...says with all the working out I do it is strange for them to be swollen. I'm really hoping this is not the start of a long term issue. Also, my big toe joint has been sore for a few months. I do a lot of lunges and yoga moves hoping that is the issue. Had blood work for gout done and that was fine. The way I eat no way I could have that. Thinking it is the Tamoxifen. Wondering if I should start drinking Tonic water?? Reading posts from years past.....

[Butterfly318]

I find that the tonic works. I suffer dreadful cramps at night.  Fever Tree do a natural tonic which is great and high in quinine. (3.50 for 4 small bottles in Tesco but worth it).. The sleep really is a problem isn't it.

Take Care  Gilly x 

[Marie123]

My GP recommended drinking tonic water. Apparently the quinine helps. Have taken the occasional glass (without the gin!) and it works . M xx