I'm on Femara and my hands are getting crippled?

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evjaq
evjaq Member Posts: 25


I'm on Femara for about 10 months. I've experienced terrible joint pain. Lately it's concentrated in my hands specifically my thumbs and middle finger. One thumb doesn't bend at all and the searing pain is unbearable at times. I'm afraid that I'll eventually lose the use of my hands all together.


Also the skin on my hands seem to scrape very easily and they are sensitive to heat and cold. But the other day was really weird I was cutting a jalapeno (hot) pepper like I've done many times before. But this time my hands got inflamed and wouldn't stop burning for a very long time. I know I should have worn gloves but I never did before and never had a reaction like this?


Has this happened to any one? I'd appreciate feedback thanks

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Comments

  • LucyK
    LucyK Member Posts: 2
    edited October 2013


    I'm only about a month into Arimidex and haven't had joint pain yet. But as a gardener, I can tell you that jalapenos vary in heat from season to season, plant to plant and time of harvest. Most jalapeno lovers I know agree it's the luck of the draw, whether you're picking them from your own plants or buying them from a store. So your reaction may, or may not, have been related to Femara. Best wishes.

  • lightandwind
    lightandwind Member Posts: 754
    edited October 2013


    This is so strange that you posted this because I was just searching for anyone else who had this problem while on Femara. Took it for 17 months and my wrists and hands are terribly weak and painful. I wake up with throbbing pain in them each morning. Twisting and grabbing movements are especially painful. My upper body strength is not as great is as use to be but shoulders and arms are very strong in comparisons to hands. Your're not alone. Crippled hands here too.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2013


    evjaq - I was on Arimidex for a year, and stopped when the SEs got so bad. One of the first to appear was trigger finger (middle finger on right hand) and trigger thumb (right.) At first my hands were so stiff in the morning I couldn't make a fist. Later, with the trigger finger, I woke up with my hand painfully bent into a claw shape. I'd have to unbend my fingers with the other hand.


    My MO told me to use an anti-inflammatory (sparingly), wear a night splint, and massage my hands and fingers well before going to bed at night.


    Unfortunately, I think it's a pretty common SE of this family of drugs. Since being off the Arimidex I'm doing so much better, but I start Femara on Monday.


    What does your MO say about your hand pain?


    Can't address the jalapeño issue, but my PCP was ready to send me to a Hand Specialist if I didn't get better. You might request one to see if they can offer you any relief.

  • aussieched
    aussieched Member Posts: 244
    edited October 2013


    Yes it is caused by Femara. I have been taking Femara for 6 years and it causes hand problems, and also many other prolems also. Over the 6 years it has affected just about every part of my arms, legs, hands, feet, wrists, neck. The problem seems to strike a particular part and be extremely painful for months, before subsiding, and them moving onto another body part. The 6 years have been very trying, but I have found, the best advise I could give, is to not sit down and do nothing, keep using all your limbs and body parts as normal, and in time the pain eases, and moves on. I think the worst was the 9 months of vertigo. I stopped and started the Femara about 3 times over the course of that year as it was unbearable, and I continued to work full time. By having a break off the drug for 6-8 weeks, the symptoms of vertigo lessened, and then it decided to move on and attacked my hips, which continue to be very painful when I walk.


    Ched

  • jacee
    jacee Member Posts: 1,384
    edited October 2013


    I got trigger finger in 2 or 3 fingers after just a short time on Femara. I started taking 1/2 a pill a day and have been on that for 3 years with no further issues. Most of my joint pain has gone away. It was that or I was going to quit taking it. Best wishes!

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    I am experiencing the same thing. Now I know I'm not imagining things or attributing things I shouldn't to the "meds" Thanks for feedback

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    I experienced Vertigo too it was frightening. Also it moves to different areas and joints like you described. This is no fun. I will have to have a long talk with my MO. Thanks for feedback

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    Thanks to everyone for feedback it really helped a lot.

  • jacee
    jacee Member Posts: 1,384
    edited October 2013


    just so you know...I switched to 1/2 a pill a day on my own. My MO was not in favor of it. However he realizes quality of life is a big deal, and didn't try to talk me out of it. I did try going back on a full pill after a year or so. The side effects returned quickly. Good luck as you navigate these waters!!!

  • wintersocks
    wintersocks Member Posts: 922
    edited October 2013


    I have been on Femara just over a year. I have sore hands in the morning. Sometimes it wakes me at night too. The knuckle area is perhaps the most painful feeling sore and stiff, and tender too. My feet hurt as well. I also had a couple of episodes of vertigo, thankfully gone now


    I might try massaging my hands to see if this helps.


    Oh It's horrible to have this.

  • ByFaith
    ByFaith Member Posts: 270
    edited October 2013


    Any hope for me? I've had a trigger thumb for several months from Arimidex.


    I've had several "mystery injuries" since starting the AIs. My MO wants me to take the full 5 years, occasionally offering up an "AI holiday", which never helps. Switching from Femara to Arimidex helped early on, but in my 2nd and 3rd years the AI has been rough on my body.


    I've treated all these "injuries" with home measures after seeing my doc. However, I never treated my trigger thumb very aggressively. I'll think it's a bit better for a while, then boom, ouch again. Oddly enough, while on an Arimidex holiday recently, it got worse, so I just started back up on the Arimidex. My foot tendinitis resolved (my bigger dog stepped on top of my foot), but not the trigger thumb.


    I never did splint the trigger thumb, as my family doc didn't suggest it. He said ice and rest. I've had it now for several months on and rarely slightly off, and I believe the doc's next suggestion will be a specialist and cortisone injection. His nurse mentioned that some people get surgery, but I'm terrified of anesthesia and, more importantly, why have surgery just to find out you get trigger finger or thumb in another hand? These AIs never stop.


    Is it too late for more icing and a splint or other measures? What has worked for you? I try to massage it when it really hurts, but that doesn't work. I'm unable to take anti-inflammatories long term because they cause rebound migraines. I've had chronic daily migraines diagnosed for 15 years and have to medicate judiciously.


    Any ideas or words of hope? It's my dominant thumb and really stops me from doing things. Thanks.

  • ByFaith
    ByFaith Member Posts: 270
    edited October 2013


    Blessings2011 ... I noticed you used anti-inflammatories sparingly and a night splint. Did your doctor give you the night splint? Sometimes I wonder if I'm re-injuring my trigger thumb at night while sleeping. Did your trigger thumb resolve? I sure hope so.


    Is it better for us to massage and stretch or bend all our finger joints? I'm ready to go to the doctor, but don't know if a cortisone injection (specialist referral) will even help. Would prefer something natural for more reasons than one.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2013


    Dawnsm - Yes, my primary care doctor gave me splints for both my trigger finger and my trigger thumb - unfortunately, both were useless. The finger splint was one of those metal ones with a foam lining that you squeezed around your finger. That was awkward and painful to wear at night and caught on the sheets.


    What I got for my thumb was a "thumb spica" splint, which looks a bit like a splint for carpal tunnel. That didn't work either, as it didn't immobilize my thumb enough.


    What I ended up using as a finger splint was a foam tube I got that was made to cushion toes. (You're supposed to cut it into smaller lengths.) I left the tube whole, and slid it over my whole finger. I could barely move my finger, but it was very comfortable to wear at night.


    As for my thumb, I wore nothing. However, had I followed up with the doctor and requested a referral to a Hand Specialist, I'm sure they would have had dozens of braces they could have ordered for me.


    As a long time sufferer of carpal tunnel syndrome, I can honestly say that yes, you CAN make your trigger finger worse at night, depending on the position you sleep in. If you sleep with your hand curled into a fist, then it will be much harder to uncurl it in the morning.


    The most important thing with trigger finger and trigger thumb is to rest the hand. Is yours on your dominant hand? Most are. The goal is to reduce the inflammation as much as possible. There is a nodule on the tendon that gets inflamed, and that bump gets caught inside the joint as you try to bend the finger or thumb. The longer it stays inflamed, the harder it is to cure.


    The first step is to reduce the inflammation. Since you can't take the oral NSAIDS, you can get a cortisone injection. The injections usually work, but you can't have them too often or too many times as they can lead to complications, and weakening of the tendons. Surgery is the last resort, and one I wouldn't consider at this point.


    In addition to wearing a good splint at night, you can soak your hands in hot water in the morning to reduce the stiffness and make it easier to move your hands. And yes - DO massage and stretch your hands and fingers on a regular basis!!! Those stupid nodules tend to make us use our hands less, and then the stiffness sets in.


    I've had major wrist injuries, lots of hand therapy and one hand surgery in my pre-BC years. I really do think it's worth it to visit a Hand Specialist, as they can give you the best orthotic devices and specialized thumb and finger exercises.


    Hope you find relief soon!!!


    p.s. I still get the trigger finger a few times a week, but the trigger thumb happens less frequently. I took a 2 month break from Arimidex, and started on Femara last week. We'll see. :-O

  • ByFaith
    ByFaith Member Posts: 270
    edited October 2013


    Thanks Blessings .... You've been through so much with these side effects. I don't feel I wake up with my trigger thumb or fingers worse than the night prior, although I do notice stabs of pain while I'm awake and sometimes the thumb locks for a few seconds. It's my dominant thumb and very difficult to avoid using it.


    Now I'm afraid the possibility exists I've let it go so long -- several months -- in hopes of it going away, that perhaps it will never heal. There have been times I thought it was healing or I would have returned to the doctor earlier. I've just tried to rest it the best I could.


    I'm really afraid of the surgery option. Firstly, I'm terribly afraid of anesthesia. Did they give you general or local anesthesia? Secondly, I wonder why I should have surgery on one digit just to turn around and have trigger finger or thumb of another digit, somewhat likely with my AI side effect profile.


    You've given me hope that a hand specialist might have other suggestions than just a cortisone injection or surgery...again, if I haven't let this go too long. I'm afraid of cortisone shot side effects. What would you do? Go to a hand specialist and try to *avoid* a cortisone shot at first in favor of orthotic treatments and customized exercises? I hope they can help me after several months? It's about the same as it was in the beginning ... no better, not much worse ... depends on the day.


    Thanks.

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    I've been on Femara for 10 months now. Apparently you have been on it longer than I have and it's still a problem. I will be going to a new MO in December and I'll ask all the questions. But from listening to everyone there doesn't seem like that many options. I will definitely ask about cortisone shots. I have gotten them before for my shoulder and it works!.


    I'm like you I'm on the fence with surgery..............That's an absolute last resort.


    You know this is Breast Cancer Awareness Month and I've read a lot of inspiring cancer survival stories but most of them are sugar coated.


    We are going through hell in the "survival" stage with these meds and I think people should know about this too..........


    I don't know about anyone else but when I say I'm a cancer survivor the response I get is "you're so lucky" and they think well that's the end of the road and we're all in "la la" land.


    I really feel more education is needed so those diagnosed with cancer get the whole story.


    Please don't get me wrong I am so grateful that I am still standing and I have a husband that has stood by me every step of the way. I just think there's much more to the story

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    I developed a trigger thumb within six months when I took Femara the first time. It was on my dominant hand and I could not hold a pen, scissors or a knife while cooking without fairly intense pain. I treated this myself by using training tape, the flexible tape that sticks to itself, and wrapping the thumb. It allowed me to use my hand with less bend in the joint, and much less pain. I eventually switched to Arimidex right about the time the trigger pain dissipated, and eventually developed a trigger in my ankle, a toe and another in my wedding ring finger after a year. I have now switched back to Femara, since I was still developing triggers I figured I would be on the med that my doc prefers from a performance standpoint. I am taking a different manufacturer than the first time and have not had these issues, at least not yet! I also take joint supplements and find that the more I move the better things are.

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    Blessings, you really hit the nail on the head with a couple of points. When I wake up in the morning I never know what's in store. If I sleep on my side in the morning the side I slept on worsens the trigger finger. If I lie on my back both hands are in pain in the morning etc...


    Also I had a lot of problems with joints prior to cancer and the vulnerable joints are the ones affected most.


    I wonder if anyone takes glucosamine and chondroitin (I know I spelled it wrong)? And if it helped them?


    Anyway, keep truckin.................

  • evjaq
    evjaq Member Posts: 25
    edited October 2013


    Hi SpecialK,


    What supplements do you take? I'm going to try the splints you suggested it sounds like a plan. Thanks

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    ev - I have taken Glucosamine and Condroitin, but now take Schiff Krill Oil Joint Formula, and Dr. Joints. Here is a link to the kind of tape I used. I applied it tightly enough to basically immobilize, but not cut off circulation. Some rolls were pretty wide so I had to cut it in half lengthwise for it to fit my thumb - I only needed 5 or 6" each time I wrapped it. The link shows purple but it comes in a more neutral color as well.


    http://www.drugstore.com/products/prod.asp?pid=140255&catid=184301&aid=338666&aparam=44544747168id140255&device=c&network=g&matchtype=

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2013


    Oh, Dawnsm - I really do believe that most hand specialists reserve surgery as a last resort. I think they prefer it if you go in asking for the most conservative treatments first.


    I don't think you should wait, though, as tendons and joints can become damaged over time. Just make the appointment and see what they have to say. It's only been a few months - it's not too late! And because this could be an ongoing condition due to the medication (Femara) they would most likely agree that splints and exercises are the most appropriate.


    As for my surgery, I had a humongous ganglion cyst removed from my right wrist, and while he was in there, the surgeon did a carpal tunnel release (not my idea). Yes, it was general anesthesia. But the cyst was the size of a walnut and had to go! (And no, I didn't whack it with a Bible like they did in the olden days... )


    I'm like you. I think I'm done with cortisone shots now.


    ~~~


    SpecialK - brilliant idea with the training tape! Soft, yet slightly pliable, doesn't immobilize the joint completely but lets it rest... good for you! I wish I were brave enough to take the supplements... I'm allergic to shellfish, and I have visions of, well, you know.


    ~~~


    evjac - I just read some studies where they found that women with prior joint issues had more incidences of trigger finger and trigger thumb while on the AIs. Lucky us!!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    blessings - whack it with a bible - sheesh! The tape was an excellent solution for me - and inexpensive. I was willing to try any non-invasive idea as I have lymphedema in that arm so not wild about either cortisone injections or surgery on that hand. The biggest annoyance was that washing my hands got the tape wet so had to re-tape a lot. Being such an allergic person myself I understand why you would avoid the supps - I am currently dealing with a steri-strip nightmare from a skin cancer surgery last week. So far none of the supps I take have caused issues - just tape of all sorts and antibiotics - surgery is a challenge for me!

  • joan888
    joan888 Member Posts: 810
    edited October 2013


    I did fine on Femara, well except for the stiffness, etc., etc., etc........ Until it became available in generic form. My mail order drug company started sending me the generic and within a couple weeks, my hands were in such pain. Could not turn a door knob, open a bottle, etc. so my ONC had me try generic Aromasin. Not good... my knees became so painful that I was crawling up and down stairs on my butt. Arimidex did not agree with me either. So, my ONC appealed to my drug company to go back on name brand Femara and things are much, much better.... just pretty stiff shoulder joints, but no pain. My ONC is recommending to stay on it for 10 years so only 6 1/2 years to go! Seems like forever.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    joan888 - I started on Mylan generic letrozole (Femara) and had the trigger within 6 months , along with aching - switched to generic anastrazole (Arimidex) and had trigger issues, a knee that reqired a cortisone injection, had aching the whole time. When I switched back to generic letrozole I received Teva - much better - far less aching, and so far no triggers. The ones I had on Arimidex have resolved on their own. I agree that either trying another brand of generic, or going onto the original name brand drug (with help from the onc with a scrip for "name brand only - patient allergic") can make all the difference. Among the generics for any of the AIs there are different filler ingredients used and can cause all sorts of side effects.

  • gentianviolet
    gentianviolet Member Posts: 316
    edited October 2013


    Does anyone know if there is such a thing as "trigger wrist"? I have been plagued with a wrist problem (dominate hand) that sounds very much like what all of you have been describing. Any advice/help/information would be greatly appreciated.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    gentian - I had experienced trigger fingers and thumb, then got a toe and ankle - the ankle was so painful that I could not walk on it - interestingly if I put on a heel it hurt less. I guess it changed the arrangement in the ankle with regard to the tendon. Some days it bothered me, other days not. This was the left ankle, and right knee needed the cortisone injection - so I had a few days where walking at all was a challenge, lol! When I went for the check on the knee, the ankle had mostly resolved (after I switched from Arimidex back to Femara) but I asked my ortho about this and he said yes - you can have a trigger in a larger joint. I think the mechanism is the same as in a digit - it is a problem with the tendon and the joint, so anywhere you have that combination could be susceptible. However, you could also have carpal tunnel or a ganglion in the wrist.

  • hbcheryl
    hbcheryl Member Posts: 5,113
    edited October 2013


    I am almost to the end of Femara but along the way I had some wrist/hand issues and what worked best for me was warmth, I used to soak my hands in warm water and got great relief, I also bought, gosh I don't know how to describe them, they are gloves and they have pockets in them with beads that you heat up in the microwave then the beads fit in the pocket so your hands are warm, I got them at Bed Bath and Beyond, honestly they worked wonders.

  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2013


    gentianviolet - like SpecialK said, yes - you could have a "trigger wrist" or any other joint in which irritated tendons must move through a narrow sheath.


    But is your wrist just painful? Does it hurt when you move it? Or does it actually get "stuck" in a certain position, and you have to physically move it to release it? Is there kind of a "thunking" (sophisticated medical term!) sensation when it releases?


    If it's not getting stuck in any particular position, then it may not be "trigger" wrist. For any of the myriad orthopedic problems we can get in our joints, the treatments are usually the same to start: Rest, ice, anti-inflammatory meds.


    You might try a cheap wrist brace, like a carpal tunnel splint, to see if that helps. If your wrist hurts more in the morning, try wearing the splint at night. Put towel-wrapped ice packs on the wrist for 20 minutes at a time throughout the day. Take an NSAID (Motrin, Aleve, etc.) if you can. Try to not use your wrist, but don't keep it immobilized, either. That can cause a whole different set of issues.


    As always, if the simple things don't work, by all means contact your doctor!

  • ByFaith
    ByFaith Member Posts: 270
    edited October 2013


    SpecialK --


    I have a question for Special K or others relating to wrapping. How did you wrap the area? Just the thumb or more involved? Did you wrap the thumb straight or slightly bent? Thanks for the links for tape and supplements. I was doing "well enough," not not healing while resting (trying not to use) the trigger thumb, but then absent-mindedly turned on a lamp quickly and BAM -- the shot of pain. I did the same accidentally scooping out dog food, etc. I have to think before I move! Did you try your best not to use it at all ... and how long did you keep the wrap on?


    Thanks, too, to the rest of my BC sisters who replied. I always enjoy reading your replies. :)

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    dawnsm - I pretty much kept it wrapped 24 hours a day, other than bathing. I had the same problem with inadvertently causing pain, when without the wrap, because it was my dominant hand. I probably kept it wrapped for a couple of months and I did wrap it fairly straight. I just cut a 5-6" length of the tape and wrapped it around just the thumb, secured to itself. The tape is stretchy so it will allow the thumb, or finger, to bend a bit but not enough to get stuck and need to pop back. I figured that isolation would allow any inflammation to calm down. Keep in mind, this was my remedy - this was not advised by any physician.

  • gentianviolet
    gentianviolet Member Posts: 316
    edited October 2013


    SpecialK - I can totally understand the moving pain. I was on Arimidex initially and within 3 months I had to give up playing tennis because of tendon pain in my right ankle (I could not push off on that foot to run for a ball). Even when I was switched to Tamoxifen the ankle never resolved itself totally. But the hip/knee pain from Arimidex did get better. Perhaps the wrist pain is carpal tunnel but it doesn't seem like it from everything I have read. I tried wrapping it with athletic tape but was afraid to wrap it too tightly as it is my lymphedema arm (upper arm only affected); it does feel better (stronger?) when there is pressure on it. Thank you for taking the time to answer my post.


    Blessings - Thanks for addressing my question about trigger wrist. Yes, it does feel a bit stuck but I don't need the other hand to release it. I can move it but then there is a shooting pain and several minutes of aching. It seems to make a small cracking noise when I finally move it. I already sleep with a wrist guard and I have tried icing, rest, and anti inflamatory meds. This has been going on for about six months now and so maybe it is time I see a specialist.


    I know this is thread about Femara but I was hoping no one would mind that I asked the question even though I am taking Tamoxifen.

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