Osteoporosis

Just to warn everybody,I've been taking Letrozole for 14 months,and had a bone scan in January and have now been told I have osteoporosis (what joy,it could be worse). So am now waiting to see the specialist,to see what this entails, has this happened to anybody else?xx

[Hidden]

Hi Hidden 💐

I'm sorry to read about this, did you have a Scan before you started the Letrozole? I had TNBC so no follow on drugs after the Chemo but l take Steriods for another condition that can cause Osteoporosis, at my last Scan it showed l had Osteopenia in my lower back & l'm due to have another Scan in April.

Are you seeing your Oncologist or someone who Specialises in Osteoporosis?

Very Best Wishes

Mrs N

[Lainey66]

I am on anastrozole and bones are terrible. Had X-ray on Friday and am awaiting results 😳

[paulam1 in reply to Lainey66]

Hi i am also on anastrozle. Am in constant joint pain which i am told is normal.been on it for about 8months now. Just wondering if pain improves over time as dont know how much longer i can go on like this.xx

[Hidden in reply to paulam1]

How they can say it's 'normal' mystifies me, pain isn't normal! Is there anything they can give you to help?

I'm not on any follow on drugs for BC except Zolendronic Infusion 6monthly, as l had TNBC; but l'm on other significant strong Meds for my Rheumatic Condition, however my knees have been so painful since the Chemo, specifically the Taxol! I can manage the pain, but present me with a set of stairs, particularly going down & l age 20+years! I'm fearful somethings going to give way, my knee, my hip or my femur, I'm off to see GP this week as l want them X-Raying!

And if anyone says but your still here or it's a small price to pay! 😬 They have no idea!

I hope your joints improve soon paulam1

Best Wishes 💐

Mrs N

[paulam1 in reply to Hidden]

Thankyou was told they could change meds but they have same side effects. Saw oncologist on friday she said just take paracetomal. Which worries me because of my liver showing signs of being unhappy every time i have blood test.thank you for your reply i just thoughtid begin to feel better once treatment ended but feel worse than when diagnosed with the breast cancer.every day is painful struggle with joints even tramodol prescribed doesnt work.sorry for moan.and thank you for reply.paula☺

[Hidden in reply to paulam1]

Paula, I always say it's not moaning, it's merely a statement of fact! And, we can do so here without apologising to anyone; bone pain is unrelenting, ask your GP about using an anti inflammatory gel, so your rubbing it on rather than taking it, we injest enough!

I'll tell you a funny story about that gel, l put it on my knees & we were out, l was wearing lovely sheer tights, l happened to look at my knees & 😱 I thought I was losing all the skin from my knees! I thought it was caused by the Chemo but it was the B.Gel 😂 it came off it a big sheet but it looked like skin!

Take Care

Angela 🌺

PS one of those warm wheat packs are good too, only at home, don't try to walk around with one!

[paulam1 in reply to Hidden]

Lol nightmare must have scared youx thank you again

Take care

Paula xx

[waveylines in reply to paulam1]

Paulum have you tried changing the brand? I found different brands of letrozole gave me different side effects. Found the one with the least side effects and have stuck to it. My GP writes it in my script so the chemist knows.

[paulam1 in reply to waveylines]

Did ask oncologist she said side effects are pretty much the same. Thank you for reply.

Take care

Thankyou

Paula

[Chrissie2 in reply to paulam1]

I have been on various treatments which have given me joint pains. My oncologist kept telling me it was my arthritis which I knew it wasn't. At least my GO understood. He put me on co-codomol. Probably wouln't help you as it contains paracetamol. As suggested already anti-inflammatory gels work very well without being intrusive.

I changed to Tamixifen last November and the pains have drastically reduced even though I have since been diagnosed with bits of cancer in my bone. I was getting to the stage where I didn't think I could stand the pain any longer but now it is copeable with

Hope things improve for you xx

[Hidden in reply to Lainey66]

Hi Lainey66

What X-Rays have you had? Had my shoulder X-Rayed & Scan'd last week, my shoulder is impinging on my arm, l have significant arthritic changes from X-ray Result but Scan Radiographer was a bit of a B & would only say there were no large tear's; when l asked if any other damage she repeated the same mantra! Helpful? No!

Need my knees looking at for sure, l had Surgery on them when I was young & they are pinned, one of my lovely Chemo Ward Sisters said Chemo gets you in your weak spots, so think that's why I'm suffering so much with my knees! 🤦🏻‍♀️

Hope you're doing OK? You look Fab with the new haircut, I've just ordered another wig 💁🏻 I can't be swanning around the QM2 🚢 unless totally Glamorous! 👸🏻

Speak Soon

Angela 😘

[paulam1 in reply to Hidden]

Ps had bone scan and mri due to shoulder pain no cancer thank god but have inflamation in shoulder and need injection of steroids to help .hope it helps xxx

[Hidden in reply to paulam1]

Yes, hope so x

[Lainey66 in reply to Hidden]

Hi Angela. My GP is hopefully ruling out cancer in the bones. I am TNBC but the oncologist decided to put me on a trial run of anastrozole. I think that is what could be causing my pains but the excruciating pain is in my forearm going into my wrist and hand. If it turns out to be caused by the meds I will come off them. I have had two hip replacements and my right one is playing up a lot, but the arm pain is different altogether. It is not like anything arthritic and I have had to remove my bracelets as just having them on my arm is very painful. I am not too worried just yet, please God it won't be cancer again xxxxx Hope all is good with you xxxx

[Hidden in reply to Lainey66]

Hi Elaine,

Please God it isn't Cancer 🙏🏼 I'm just wondering if it's a Stress Fracture? With it being so painful & not feeling like arthritic pain, that anastrozole sounds like a bit of a bad boy!

Let me know when you get your results.

I'm OK apart from my knees & the shoulder.

Take Care 💕😘

[waveylines]

Yes am afraid one of the long term side effects of letrozole is loss of bone density. I take as much calcium as I can in my diet, plus supplements, k2 &vitamin D to try to maintain my bone density for as long as I can. Am faced with 10years of the stuff and have oesteropsis in my family so sadly my bones are bound to be affected....lol

They should put you onto meds to help maintain/strengthen bone density.

And lots of walking if you can......I struggle with that but walk three times per week. Xx

[Debs1962]

Hi yes I have osteoporosis, I had a bone scan before I started taking letrozole, as my husband knew that it can cause thinning of the bones, didn't think at 52 my bones would be a problem!

I am now on alendronic acid once a week, and daily calcium and vitamin D tablet daily. On the plus side the alendronic acid is thought to prevent bone cancer!

[Hidden in reply to Debs1962]

Hi Debs

I was on AA as a preventative as I'm on Steroids for Polymyalgia Rheumatia but my Oncologist changed me over to Zolendronic Acid Infusions x 6monthly for 3years as a Prevention of the BC reoccurring in the bones.

Hope you are doing OK?

Angela x

[Debs1962 in reply to Hidden]

Hi yes I am doing ok, taken now for nearly two years, side effects are not too bad, manageable, my mum was on alendronic acid from age 70 to 82 she turns 83 soon, they took her off it recently as a bone scan showed her bones were now no different to someone of her age should be!

My father in law has PMR takes steroids, he is 82 has taken for about 18 months now, low dose think about 3mg a day.

How long have you taken?

[Hidden in reply to Debs1962]

Hi

I've been on Steroids 5years & was 'undiagnosed' for four months, barely able to walk or move my arms but they said "I was too young" at 56 but it is becoming more prevalent from 50 onwards, the steroids were of course like a Miracle l improved in 24hours & all pains gone in 3days! It's been up n down over the years but currently on 6.5mg plus Methotrexate!

Best Wishes 🌺

[Annie69 in reply to Hidden]

Hello Mrs Nails.

I also have rheumatoid arthritis, have since I was 23 and now a few decades older than that. I was only allowed steroids when having a flare up. I was surprised at my improved energy and general youthful feeling when I started chemo for breast cancer until I looked up my exact cocktail of chemo and there it was - steroids. I have been taken off Methotrexate until I finish chemo. Can't remember why but it was a decision made by oncologist and rheumatologist.

Keep smiling.

[Hidden in reply to Annie69]

Hi Annie,

Methotrexate is actually Chemotherapy but in a lower dose for RA & other uses so that's why we don't take it when having Chemo

And, yes they give you Dexamethasone as well with the Chemo so l was a bright little bunny awake until 4am for 3/4 days I was on it each cycle!

Are you in the Breast Cancer Haven Group on here? Where are you up to in your treatment? We can always Private Message if you wish or speak in the other group

Best Wishes Mrs N x

PS just realised this is the Breast Cancer Group. We have a similar thread in the PMR GCA Group!

[Annie69 in reply to Hidden]

Hi Mrs N.

I found the breast cancer group because I joined the age related macular degeneration group. However, my eyes seem to have been shocked into a total lack of degeneration since I had my cancer diagnosed last summer, when I accidentally joined the Indian version, then found The Haven.

I've had left mastectomy plus right reduction, all ready for left reconstruction from what is called my "tummy resource" and I call "the fat bit." That should come when my chemo and radiotherapy are finished, but my oncologist tells me that since my hospital has become a "centre of cancer excellence" the waiting list has lengthened alarmingly.

[Hidden in reply to Annie69]

Hi Annie

Good to catch up with you. I had a left Mastectomy & Chemo but not considering reconstruction at this time because of my auto immune disease affecting my muscles.

Sorry to hear your reconstruction is going to be delayed but hopefully not by much.

Best Wishes

Angela x

[EW03-03]

Yes have a fracture of my T11. Just waiting results of my bone density scan. But all looks like osteoporosis as well 😢

[Louisejr]

HI there

I have only been on Letrozole since November, I was hoping that things would improve, as the pain and muscle stiffness is so debilitating. I am swimming twice a week now, and trying to walk where I can instead of taking the car. But some days it is such an effort just to get out of bed.

I feel that all I do at the moment is moan - I said to one of the ladies at work, I am one of those people that you shouldn't ask how they are lol. and avoid at all cost

I do find a lot of people insensitive, though, it's like you've had your op, and treatment so you should be back to normal! I am struggling to remember what normal felt like at the moment.

So pleased there are others out there with the same issues, who I can relate to - so thankful that I found all of you.

Louise xxx

[Hidden]

I was on anastrozole long-term but was also prescribed calcium supplements and alendronic acid to counteract the effects. If you can do weight bearing excercise that will also help strengthen your bones. Unfortunately drugs that prevent the intake of oestrogen do have negative impacts on bone strength. While you are on the drugs, annual bone density scans are usually recommended (they are in this area anyway). I suppose it's like anything else - you have to weigh the potential benefits against the potential harms. Wish you well.