Forum Discussion
Joint issues or rheumatoid arthritis?
After 5 months of Letrozole and now a 3 week holiday from it because of developing very sore trigger fingers in both hands that has now increased to thumbs and wrists with persistent bone aches, my GP ordered a blood test for Rheumatoid Factor the normal range is less than 14, mine is at 508.
I’m now waiting to see a rheumatologist to assess if it is actually rheumatoid arthritis 🙁
Has anyone else had their RF go up after Aromatase Inhibitors?
I’m now waiting to see a rheumatologist to assess if it is actually rheumatoid arthritis 🙁
Has anyone else had their RF go up after Aromatase Inhibitors?
15 Replies
- Thank you Keeping_positive1and arpie
- Some don't have many side effects at all, and we don't usually hear from them on the forum. Eviq is based on studies and will be reviewed again in 2020. It has a lot of good information and is evidence based. Too many factors alone to say if the depression is just caused by the AI or compounded by some joint pain, but I hear your point of view @arpie. Keep up the good work on the forum.
- @Keeping_positive1 I see that you also suffered depression when on Letrozole (yet it doesn't rate a mention in eviq.) We added Depression to the list above at one member's request - as it is a very real nasty side effect of the treatment. No doubt as well as yourself, there are more - many more members, who would indicate that Depression is a debilitating side effect of their treatment & specifically for Letrozole. It may also be a major cause of some people going off their AIs early - along with the aches & pains.
Given the massive increase of women diagnosed with Breast cancer around the world in the last 5-10 years and the new, first hand information coming from them re side effects suffered - I think I'd be relying on information that is a tad more recent than this outdated info that is 11 -15 years old already (as appears to have been used in formulating this document.)
I also think you'll find MOST patients describe side effects honestly - some of which are quite debilitating to their mental and physical well being. - They use eviq to give out patient information. Some patients do report other side effects as well, and some patients do not get all the side effects, some get very few. It is a base! Consumer Medicine Information sheets list many more possible side effects.
- Sadly, That Side Effects list on 'eviq' is SO lacking in real substance - if this is what the Oncs are using as their main reference - no wonder they dismiss our complaints as being trivial! ...... It would seem that all aches & pains get put into the 'arthralgia/myalgia' umbrella, when there are SO many different parts of the body including joints/limbs that are involved & one pain medication doesn't necessarily suit them all ...
I was using thumb/hand splints too for my extreme pain for trigger finger & the base of the thumb. Since changing to Arimidex & taking medicinal cannabis oils, my aches & pains have greatly diminished & I am sleeping better.
Below is a list that I found some time back & I have been adding (at members' requests) additional side effects that they have suffered whilst on those meds - the original side effects are shown as dots - our added ones are shown as 'x'.
Even before OUR 'x' were added - it was one of the most honest side effects sheets that I'd seen to date.
This list covers the more common Hormone meds for BC. I've added the 'most common alternate' names of the different meds and also a description of how the various meds are supposed to work (AI, SERM or ERD.) - https://www.eviq.org.au/medical-oncology/breast/adjuvant/30-breast-adjuvant-letrozole
Oncologists use eviq website. You can type in the search bar to find the information you require. I hope this helps. - Hello everyone thank you for your replies.
I have tried Panadol , nurofen and endone and nothing seems to settle the pain down. I called and spoke to my medical oncologist and have been told to stop taking the Letrozole and I will see them in January 2020 and if the pain has eased we will talk about changing the medication.
I was on tamoxifen first for 6 months until I had my ovaries removed and had no idea that could cause heart attacks. I know medication can affect people in different ways but where can I find information on medication and possible side affects so I can be aware and start to take control of my treatment as up to now I have been doing what I have been told to do.
I would have liked to give it a good six months but I just can not deal with the pain and I don’t want to walk around like a zombie everyday.
@iserbrown @Keeping_positive1 @Shakalker thankyou so much I am new to the online network and I appreciate you all giving me the time. - @iserbrown I tried Panadol but it did not touch the pain, then I went to Advil but only as a last resort, even though I took with food it felt later like it was burning in my gut. I have now bought 2 wrist and thumb hand splints. I have found by immobilising my hands it helps get me through.Sleep is hard going.
I am feeling really fatigued and find work very difficult, I just want to pack up and go home.
i called the rheumatologist office to check they had received the referral and the receptionist was nothing short of a right bitch.
i was informed they had got it but nothing gets booked till the doctor reads the referral and decides how urgently he needs to see me, and it could be anywhere between 6-9 months before I get an appointment. It has now been 3 days and no contact yet.
@Dreaming2019 my surgeon suggested I go off Letrazole to gauge if it was causing the problem (I know exactly what you mean about the “wiping” thing) mine also ache right into the bones, so after 3 weeks it has not lessened.
@Keeping_positive1
I really don’t think I will continue with Letrazole, apparently the AI’s ability to stop eostrogen production opens the door to auto immune problems. Tamoxifen has less of an affect on this but my mum was on Tamoxifen 20years ago, after breast cancer surgery and radiation, within 18months she was experiencing many small heart attacks, then she had a major stroke and passed 12 days later. I’m kinda uncomfortable about that, so I will try another AI.
Here’s hoping it is a little more forgiving.
Best wishes to all out there. - I also tolerated Letrozole for 6 months, and in that time I plummeted into depression, and was so stiff, with a lot of joint stiffness and muscle aches, I could hardly wipe my own bottom (TMI), true story. So my oncologist suggested trying another AI. There are other AI's equally effective that may be more suitable for you.
- Do you take anything to relieve it? I tolerated letrozole for 6 months and took Panadol Osteo at the suggestion of my Onc. After 6 months he agreed it was time to change to a different AI.
