Olaparib side effects

[Mysticmeg123]

hi everyone. Just looking to hear from anyone who might be having side effects with Olaparib I have been taking 300mg a day for almost 18 months. It’s been very tolerable until a few weeks ago. Started with shoulder pain but now every joint and muscle hurts ( especially first thing in the morning). Saw an orthopaedic consultant last week who said it’s chronic bursitis. Gave me an injection in the worst shoulder and I had such relief. All the aches and pains disappeared. 4 days later, back to square one. I just wanted to understand if anyone else’s joints have been affected by this medication. I am really struggling to stay positive- this is so hard to manage. Any shared experience would be helpful not least it will help me manage my next conversation with my Onc and Orthopaedic consultant. Many thanks in advance

[Seasid]

Could you put some cold on your pain? I had golf elbow and cold was a relief. I can't advise you more, but maybe even warm would help to the effected area. Ask your doctor, it is only my idea.

I personally would not let them inject dexamethasone as it is very bad.

[Mysticmeg123 in reply to Seasid]

Thank you for sharing your advice. I am doing the ice and heat but it’s not helping. Hoping for answers tomorrow x

[DianaPrince_]

Yes. And it went away after i stopped the parps. I had bursitis in a hip, and tennis elbow. (Can assure you i was not playing any tennis.) Every joint was sore. Was worse when i tried to move after being still for a while. But wore off the more i moved. The hip bursitis never wore off, but also got better once i was off the parps.

[Mysticmeg123 in reply to DianaPrince_]

Thank you for sharing. I am hoping it is the medication too. I don’t want an mri so trying to mail this down without it. I hope you are doing well. How long since you stopped the meds?

[DianaPrince_ in reply to Mysticmeg123]

It's been 18 months off the parps. And the majority of the side effects are gone too. However, 2.5 years of treatment has taken it's toll and i'm not the woman i was before all of this. I have gained 3 bloody stone. Which i simply cant bloody lose. My stamina has declined though what what i want to do hasn't.

Surgical menopause is very tough. Hot flushes, anxiety and insomnia are the worst of it. Oh and menopause can cause joint pain.

But i'm alive and healthy(ish). I've rebuilt my life after the wreaking ball that is cancer swung through it.

[Mysticmeg123 in reply to DianaPrince_]

Diana you make me laugh. I am struggling with exercise due to the inflamation to all my joints. I have been doing yoga for most of my life, and yet now I can't even bend to put my shoes on. And yes, coupled with menopause, it feels like an uphill struggle with the weight. Thank fully I am past the hot flushes, but, my temper is out of control. But, hey ho, still here fighting the good fight with enough lung capacity to keep moaning!!!

[Newbery3]

I have a really bad hip nd big toe joints and tennis elbow! Infact my joint and neck are bloody stiff 🤣 I'm sick of hearing myself moan. I've never heard of bursitis🤔the pharmacy just keep telling me to take ibuprofen, I try not to take it because that's bmnot good either. X

[Mysticmeg123 in reply to Newbery3]

I hear you Newbery. I dread going to bed because I know the morning wake up and getting out of bed is going to be unbearable. Like you, I am sick to death of complaining about this. I have been taking so many painkillers that it has affected my liver count! I honestly believe it is the Olapraib causing this pain because every other avenue leads to nowhere. I will update you when I get answers as it may help you too.

[Starbarn]

hi. I’ve been I olaparib for nearly 2 years . I have joint pain which has got worse this winter. I have hip pain and had siatica last year. I had an MRI which showed this but no cancer. I paid for physio and acupuncture which helped a lot. I also used ibuprofen gel as I can’t have in tablet form. I also used Husan muscle comfort that you can get on line. It really helped me.

My oncologist told me olaparib does cause joint pain. Hope this helps.

[Mysticmeg123]

Thank you so much Starbarn. My onc seems to think it only causes cramping and aches. But, this is more than that - its proper joint pain to the point I cannot raise my arms in the morning. It does calm down a little once I get moving, but, it never really goes away. I will look up Husan muscle comfort on line. Thank you x

[Goingwiththeflow]

Hi Mysticmeg123

I've been reading your thread with interest, because I've had the same question and don't yet have a definitive answer. I thought I would add my experience in case it's helpful.

I've been on olaparib for 7 months now, in combination with bevacizumab, and I too have been experiencing significant joint pain since starting the olaparib. It started with my right shoulder, and then I noticed stiffness and pain in my hands in the mornings, as well as generalized body stiffness and soreness after sitting.

Every morning now I experience significant stiffness and soreness that resolves after movement, as well as ongoing pain in both shoulders and periodically in my hips and lower back. The shoulder and hip pain tends to be better some days and worse on others. I find that it gets worse for a week or so after each bevacizumab infusion.

I too wonder what the cause of it is, and am hoping that it's from either or both of the maintenance meds that I'm on.

My oncologist said that we have estrogen receptors in our joints, and that menopause (in my case, sudden surgical menopause) often comes with increased joint pain.

I'm thinking that the pain is a combination of menopause and side effects from the drugs, and am very curious about whether there will be an improvement after I stop the bevacizumab and olaparib.

In the meantime, I'm staying as active as possible, doing a lot of gentle stretching, and have recently had some Thai massage treatments that made a significant difference in my neck/shoulder and hip pain.

Your pain sounds quite debilitating - I'm wondering whether a reduction in dose is something that you have considered. I've read that others have had improvement in negative side effects when they reduced the daily dose. It seems to me that body size/weight would make a difference in the amount a person would need, and we are all prescribed the same dose, despite those differences.

So much yet to be discovered about these drugs!

[Mysticmeg123 in reply to Goingwiththeflow]

Hi. I cannot tell you how reassuring it is reading your post. I am on the lowest dose of Olaparib so reducing further is not really an option. I think providing I know it is definitely the medication causing this, I can hold on till Febraury when I should be off it. In the meantime, massages, have not really helped. I think they made the pain worse!! Anyway, am seeing the Orthopaedic consultant again tomorrow and he may refer me to pain management which I don't mind because I hate popping pills.

Can I ask if your pain crept up gradually or in one awful go? Mine was a little bit of shoulder ache which I thought was due to the weight training I was doing. But from that one shoulder, it is now both shoulders ( equally stiff and painful) and my right knee. It just came overnight and feels like I have been run over several times in the night .

I will share whatever treatment plan I get in the hope it can help others who like us are being dragged down with this pain.

Thank you again for sharing your story. I really appreciate it. Wishing you well x

[Goingwiththeflow]

Hi Mysticmeg123

I understand how reassuring it is to read other people having the same issues. I've been wanting to find out if others have had my experience of body pain with the maintenance meds, and hadn't really gotten much response, so reading your account was really helpful.

Did it come on quickly or slowly? That's kind of a hard question to answer. I feel like it was both, if that makes any sense. It started with right shoulder pain that I came on quite suddenly right after I started taking olaparib, and that at the time I attributed to aggravating the shoulder by pushing a bike up some stairs. But then the left shoulder started hurting too, and then gradually I felt aching in other joints. The weirdest pain for me has been in what feels like the bones in my feet - I feel that when I first get up in the morning - and there's also been morning stiffness and soreness in my fingers, and thankfully that goes away pretty quickly after I get moving.

I'm really hoping it's a side effect from the meds, because I don't love the idea of living with this kind of pain for the rest of my life. (Although, as I write that, I'm aware of the privilege at this point of even having a life to live....so there's that...)

I'd be very interested in hearing whatever you learn about this, thank you so much for sharing.

[Mysticmeg123 in reply to Goingwiththeflow]

Omg I’m the same. The thought of living with this for ever is unthinkable right now. My feet also hurt in the morning and I swear it feels like they are broken!

I would be very happy to share any advice I get over the next few days which could help The problem is that everyone’s experience is different and I thought I was doing so well with this medication until this happened . It’s been only down side so far and I do feel blessed to still be here 🙏🏽

[Mysticmeg123 in reply to Goingwiththeflow]

Hi. so I had my consultation with the Orthopaedic consultant and having reviewed the scans he says it is definitely tendonitis and bursitis that is the culprit. He says the steroid injection I had last week ( in my right shoulder) can take up to 2 weeks to take effect. He will do another one in my left shoulder next week. In the meantime, he has arranged for me to have one weekly physio to keep my joints moving in the hope that this will calm everything down and strengthen the shoulders. He is not convinced that the medication has caused this, but, even if it is, he says they have to find a way to reduce the pain and get me moving again. I will report back once I have had the 2nd injection and the physio. Thankfully no more pills have been recommended. I honestly feel like a proper old git at the moment!!! xx

[Goingwiththeflow in reply to Mysticmeg123]

It's interesting how the medical professionals don't seem to think it's a side effect of the meds. I had the same response from my oncologist - a skeptical "maybe...." when I suggested that the joint pain might be caused by either or both of the maintenance meds. It's just so coincidental in timing - starting meds, getting pain - but I guess we shall see once I'm off the meds.

It really is a balancing act - happy to be on the meds because of their hoped for benefit, but unhappy to have to deal with the side effects.

Thanks for sharing what you learned from your ortho

[Itha]

Hi, I was on Lynparza and bevacizumab previously. Bevacizumab x 16, Lynparza 18 months. The bevacizumab definitely created joint pain and stiffness that went away once I stopped. I had a recurrence, surgery, chemo and started Lynparza again. This time the Lynparza was terrible.

Since I self funded and the cancer is back, I stopped after 3 months. I had 2 bouts of 'gout' attacks, such bad cramps at night that I couldn't sleep, and definitely far more tired even though my HB has recovered beautifully to about 12.5 on average. My body decided it simply does not like it. I also struggle to walk first thing in the morning (sore feet) but it is improving already. I saw my physio and she noted how every joint she touched was sore (as if inflamed) - I initially thought it was because I walked a stretch of pathway that was at a bad angle, but then realised it was much more than that....all joints. Yes, tennis elbow, bursitis, .....all of those with previous Lynparza (I was on 600mg a day at the time)

Perhaps the cumulative effect of treatments catching up? I now stopped the Lynparza a week ago, so I am waiting for improvement as it clears out my body. I have found the biological more affordable bevamyl to have far less side effects than bevacizumab. It might be something to consider?

The bevamyl is hopefully slowing down the progress of the current recurrence. Seeing my Prof (surgeon) again in Feb for CT scan and decision on surgery date. In the meanwhile I am living a full live and actually enjoying some red wine again - first time ion last 3 months (Lynparza most certainly makes your taste buds change into little not-so-well-behaved monsters)

[Mysticmeg123]

Hi Itha. thank you for sharing your experience. I am so sorry you have also had similar side effects but at least you have hope that by coming off the medication, the side effects will be minimised. Its all trail and error isnt it? I love that you can enjoy red wine again When my taste buds changed I told my Oncologist that if I lose my taste and appetite for my red wine, I will find out where she lives and hunt her down😂😂! Thankfully, whilst everything else tastes terrible, the red wine continues to be my saving grace. Good luck with your scan in February 🤞

[Fernaly]

I'm on 300/day olaparib as well, I've been on it for about 10 months. The shoulder pain has been pretty debilitating, it's focused in my right shoulder and on worst days I can't lift my arm, only works from the elbow down like a t-rex 😩 It's in my back and legs, I'll get spasms if I'm standing for too long.Ibuprofen helps but I can't take it due to blood pressure meds (thanks Avastin!) so pretty much all I can take is Tylenol or tramadol. Tramadol helps some but I don't want to make it a daily use thing.

Hot soaks help a lot for me. I ended up getting an inflatable hot tub and try to soak at least daily.

I still have another year of olaparib ahead of me but I don't know, it's hard to think of living in pain like this for another year. Sick and tired of being sick and tired! But my CA-125 has remained stable since finishing chemo and clear CT scans so I'm trying to struggle through to give myself the best chance of not having a recurrance.