Letrozole and Limb Tingling/Severe Sore Feet, Leg Stiffness

ThreeTree

Has anybody else experienced anything like this? If so how did it go and what did you do about it?

I have had increased limb tingling (arms and legs, hands and feet) along with sore feet and very achy and stiff legs - to the point where I have had short periods of difficulty standing and walking. On a couple of occasions it even reached a super scary mode where I was thinking that if it got any worse I could become paralyzed and not even be able to get to a medical place (I live alone). I had a bad episode last Sunday afternoon, although not as bad as the one a week previous to that, so I went to the urgent care yesterday. They ran a few tests but did not find anything particularly alarming going on. They did an ECG and blood work. I told them I had had similar symptoms before, that turned out to be dehydration and/or electrolyte imbalances (low sodium and potassium) and that when the low electrolytes were addressed, the problems cleared up. They said my sodium was a bit low, but not worrisome, and the potassium was OK this time.

I'm also experiencing real tight chest and back muscles that some have suggested is costochondritis, but I'm wondering if the letrozole is causing this too. The tingling in my arms gets worse when I type and I've read that letrozole can cause carpel tunnel that causes tingling in the arms at least (still have the tingling legs too). Typing also really aggravates my chest and back muscle tightness and again, I've see that that can be costochondritis related. I've been to the ER before for the tight chest muscles and they said it was indeed muscles. I also have some neuropathy/tingling in hands and feet that has continued ever since the Paclitaxel, but when it moves up my whole limbs, I'm inclined to think it is more than the residual neuropathy. The urgent care place said they don't know a whole lot about the cancer treatment effects, but that they weren't seeing anything that would sound an alarm bell. I seem to have become one big tingling body/joint ache that waxes and wanes a bit.

I have recently read on a menopause site (not a letrozole side effect site) that low estrogen can cause body tingling, although it might be a less common and less known menopause/low estrogen symptom. The rationale was that estrogen is related to lubrication that protects nerve endings and that that can be lessened or disappear with low estrogen, hence the tingling. Letrozole could also be the cause of the body aches and tight muscles, but I just have no way of knowing what's what. All of this tingling, stiffness, and aching/tight muscles seem to be getting worse and I just don't know at what point it becomes more than just a side effect to put up with vs something really scary and not good at all.

Worst case scenario it could be cancer spread to the spine, but at this point, everything I know is suggesting letrozole and/or costochondritis, i.e. musculoskeletal causes. I did have a chest x-ray as recently as April (that I understand shows the spine) and it was all good.

I would greatly appreciate anybody's thoughts and comments about this. I'm trying to get a follow up with my surgeon soon and will bring all this up with her, but in the meantime am getting pretty worried and even scared at times.

bcincolorado

It can cause bone issues I know and when I was on it my MO checked me regularly in my labs and had me increase my calcium intake. I would suggest you contact your MO office as well in case they need to run some labs to check and make sure you are not having a reaction or need to change you to another AI instead. Best wishes.

moth

I agree with getting your MO to review your symptoms and consider whether to switch your meds.

I'd also consider whether you need registered massage therapy and physio. Many of these symptoms could be related to postural issues and might need core strengthening exercises and stretches.

If things don't improve, I'd consider asking for a ct or MRI of the spine.

Best wishes!

ThreeTree

bcincolorado - Thanks for your comments. I don't know if I'd know a bone issue from a muscle one. I don't think I can tell bone pain from muscle pain. Also, I read on here somewhere where someone said that a medical person told them that their symmetrical thigh pain and tightness was actually due to their hip joints being so sore from an AI. I wonder if my leg stiffness and tingling isn't related to my hip and knee joints being sore, and the arm tingling being related to sore wrist joints. It's just hard to tell. I haven't found my oncologist all that helpful in the past, so I usually seek answers elsewhere first, but I might have to contact her. She usually dismisses my side effect complaints and questions about them and says things like, "We just don't see that here" or she insists it's from something else, e.g. aging or I must have had the problem before cancer. She did offer a switch to Tamoxifen once, but I declined as that sounds even scarier to me and I think I'd rather stick with the AI's. I wonder sometimes though, how many AI's we can randomly try to reduce side effects, but will they still be effective then later, if we move to stage 4 and need them then. I'm never sure about how many of these drugs to try vs leaving them in the tool box in case something worse happens later (knock on wood and fingers crossed of course that it doesn't). My diagnosis was a bit like yours, but a little worse. Left IDC abt 5-6 cm, gr 2, 0/2 nodes, ER/PR+, HER-. The stage is hard to know though as it was initially IIIB but then became something like IA or IIA after chemo. I've never quite got it all.

ThreeTree

Moth - Thanks so much. Yes, I've wondered about posture too. Some of this back ache gets aggravated by hunching over the laptop, bending over the sink, etc. I've also heard that costochondritis pain in the front of the chest can wrap around to the back. When I see the surgeon later this month, I'm going to ask her about a referral to PT. She had sent me to OT for lymphedema, but those stretches, and sometimes the massage seemed to aggravate what seems to be costochondritis. I quit going to those sessions for now and have been wondering if PT wouldn't be better (my LE person was an OT).

Moderators

Hi ThreeTree,

We're so sorry to hear of the difficulties you're experiencing. It can certainly be scary and frustrating! We agree a consultation with your oncologist is probably in order -- as mentioned above, perhaps there is another medication you can try that will affect you less. As our main Breastcancer.org site confirms on the Femara (letrozole) page, the effects you're experiencing are common with this medication. (If you click the side effects links on the Femara, these will also take you to pages with tips to help manage these side effects.)

We hope this helps and that you find relief and answers soon!

--The Mods

ThreeTree

Thank you moderators. I looked at the page you recommended and it says nothing about the stiff and tingling limbs, unless that can be inferred from the "joint and muscle pain" notation.

I do have osteoarthritis and osteoporosis, so those things could also be adding to all the troubles; as if letrozole wasn't enough! Neither of those conditions were particularly problematic for me until letrozole. The osteoarthritis had been fairly mild, and the osteoporosis has held it's own through 18 months or so of letrozole.

I actually find more information that I can relate to when I google things like "low estrogen and tingling" or "symptoms of low estrogen" than I do when I google "letrozole side effects". Looking at what low estrogen does specifically really adds a lot more to the mix than what appears on those side effect lists.

ThreeTree

I've been googling around a little bit more this morning and this tingling in all my limbs does seem to be highly associated with estrogen drops during menopause, so I'm assuming the same mechanism is at play here too, with the letrozole. I really didn't have a bad menopause, so some of these symptoms are real new and scary to me, even at 68. My problem just might be a combination of the chest/back muscle (costochondritis) problem along with side effects of letrozole. When the side effects calm down a bit, I think I can handle it and stick with it, but when they ramp up like they do sometimes, I head for urgent care of the ER and think something terrible is happening to me. I just don't see many on here talking about tingling and numbness in their limbs as any major problem, so thought it might be something else. There's still the posture issue and my spine (osteoarthritis, osteoporosis). That too could put pressure on nerves. Also just read that like with carpal tunnel and our wrists, there is something similar that can happen in ankles. All of that causes tingling too.

LillyIsHere

ThreeTree, when I started letrozole almost 2 years ago, I had joint, muscle, and bone pain. My joints were so stiff, I was shocked! I am much younger than you and have been doing yoga for a long time so all these pains and stiffness came as a big surprise. I continued yoga, pushing myself to keep moving. Right now, my stiffened and joint pains are almost gone but the tingling of my feet and hands started in April, right after the first covid vaccine. My hands have improved and my legs and feet are slightly better but not back to normal. Since it is been over 4 months since my first vaccine jab, I assume weird tingling will continue for some time. I am not sure if it was the vaccine that triggered it or just a coincidence. Is your tingling sensesion worst in the morning?

ThreeTree

Hi Lilly,

When I first started the drug, I had aches and pains and stiffness and just kind of got used to it. It has always seemed to wax and wane with no real set pattern. I think it is very interesting that you associate your tingling with the vaccine. I got mine in March and April and I noticed an increase in letrozole side effects at that time. My costochondritis also seemed to really flare up then too. I got more hot flashes, joint aches, and yes, some tingling in my hands and feet - more than usual. I think it gradually subsided and pretty much reverted to the usual over weeks and months that followed. One thing in this current case though, is that I took some d-mannose for about 2 weeks to treat what I was pretty sure was a uti. I didn't want to do an anti-biotic and had read how many have luck with the d-mannose, so I thought I'd give it a try. It did clear up my symptoms; not as fast as an antibiotic, but everything did get better (fever, bad low pelvic area pain). By the end of the two weeks that I took it though, I was so freaky and anxiety ridden, I couldn't believe it. I'd never felt like that before in my life. Also, over those two weeks, all these joint pains, muscle aches, and tingling got real bad, and I think I might just still be recovering from that. Sort of like the vaccine - it just seemed to throw everything off and I haven't been quite right since. It's been a little over a week since I stopped the d-mannose and I thought I was gradually getting better, but it looks like maybe a 2 steps forward, 1 step back sort of getting better.

I really don't notice if the tingling is worse in the morning or later. I've had some real bad afternoons with this current business. I'm finding it hard to notice patterns to these side effects. I just notice that sometimes certain things seem to trigger real bad flare ups of letrozole side effects and the chest muscle problems. And when that happens, it really happens! These things can get downright scary sometimes.

I'll bet your years of yoga weren't any real help, because it doesn't seem like it is about movement so much as lubrication of joints and nerves, etc. Supposedly low estrogen wreaks havoc on all the lubricating mechanisms, exercise or not. I walk every day and I'm still stiff as a board after sitting and standing.

LillyIsHere

ThreeTree, an acupuncturist told me to try to remove all spicy food from my diet for a month and see if there is any difference. Spicy food including turmeric, pepper, ginger, etc. He said spicy food aggravates and makes nerves more sensitive to pain. In my case it did help. Maybe may help you too if you change the diet to plain, boring one for a month or so

ThreeTree

That's definitely something to think about Lilly; I appreciate the idea. I do use a lot of turmeric, pepper, and ginger because not only do I like them, they are known cancer fighters, so I'd hate to give them up altogether. I might try and cut back though and see if that helps. I cut out pepper once because I thought it might be causing some stomach trouble I was having, but it made no difference. I also cut out the turmeric supplements I take for a couple of weeks to see if they were causing a problem I was having, but I wound up aching even more and couldn't wait to add it back.