Off of AIs for 2 1/2 months, will the knee pain ever go away?
I was on Tamoxifen for a year and then on Arimidex, Aromasin, and Femara (AIs combined for 3 years). My oncologist finally took me off of the AIs in July as he said I was unable to tolerate the AIs even with him trying to manage the side effects and that now it came down to a quality of life issue. I am pretty much crippled up. I can barely walk, cannot straighten my knees and am in constant pain. I have now been off of Femara (my last AI I tried) for about 2 1/2 months now. I am still crippled up. I have swelling in my legs that has not gone away either. For those of you that had the debilitating joint pain, how long did it take before you were back to "normal" after stopping the drugs and was there anything you had to do to get through this process? I am only 50 but I feel 150.
Comments
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Hi Cowgal,
I have no answers but hope you feel better soon! I am 4 years into AI and struggle many days lately. I hope that your pains settle down. However, I think that you should seek out another type of doctor - maybe a rheumatolagist? if the pain does not diminish. I certainly hope that you get some relief!
Best
Beau
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I had absolutely vicious stabbing pain in my hips on standing. After a month's arimidex holiday, had only minor improvement. My onc ordered a bone scan which showed arthritis in several areas, but not my hips. He referred me to a physical therapist who determined that my problem was bursitis. Between massage and strengthening exercises, the problem is almost entirely gone.
In other words, chances are your problem is not entirely due to your AI. As Beau suggested, it's probably time for a specific focus on your knees. Maybe your onc, like mine, can order more testing. Or maybe you'd be happier chatting with your primary care or going directly to a rheumatologist or ortho. I think we agree that you've played the wait-and-see game long enough, and I sure hope you get some great relief really, really soon.
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Cowgal,
We have to remember that the AI's cause the new conditions. Once you stop your med, you still have to treat the inflammation. It takes time. This simple fact is important to remember. Are you taking a prescribed anti- inflammatory? Hope you see results soon!
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Thanks for your responses. I did have a bone density scan that came back normal. About a year ago I had x-rays of both knees that showed that one was moderate arthritis and the other mild. My MO and my family doctor were unsuccessful at being able to help me control the side effects, which is why they took me off of all AIs so staying on the drugs to treat the side effects made no sense since they were not helping me. They tried a lot of things including different anti-inflammatories. One of my surgeons nurse practitioners told me that I should give it a full 6 months to see if it is out of my system so I guess I have to wait it out another 3 1/2 months and see where I am at.
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I did not have anywhere near the symptoms you describe. I did have bone pain, and plenty of it, but I was never "crippled up." It took me about 6 months after my 2 years of Tamoxifen (which gave me the worst bone pain), and then 3 years of Aromasin (on which the pain lessened), before I felt several of my side effects waned. I was even given a "vacation" off meds to see if the many side effects would ease, but it was only a matter of weeks and it did not help. So I did my best to tough it out for the 5 years. But I quit a few months early (partly because I had to pay cash for my meds - no insurance - and I think it was about $400 or more per month).
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Swollen legs sounds a little odd - are your blood pressure & circulation OK? Of course, nothing works like chronic pain to raise the BP...
Movement is actually supposed to be the best treatment for osteoarthritis because it lubricates the joints, etc. (hard to do when it hurts so much). Glucosamine/chondroitin is an OTC supplement that some people find useful but needs to be taken for several weeks at a sufficient dose for optimal results.
Perhaps physical therapy would help your knees Hopefully your primary care practitioner can refer you to an appropriate specialist: you are way too young to be so debilitated!
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cowgal, have you tried the supplement curcumin? It's a natural anti-inflammatory, and some people get amazing relief from joint pain with it. I'd told my hair stylist about it a few months ago, and when I saw him last week, he couldn't stop thanking me and raving about his total lack of pain in his knees and hands. He said it took about a month for him to see results, and since then he's told several other people who have experienced similar improvement. I've used it for several years because of research on it re. cancer, but I'm on an A/I (Anastrazole) and have little to no joint discomfort. (((Hugs))) Deanna
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Thanks everyone for your responses. I did have to go to a cardiologist to see if maybe I got some damage to my heart from radiation. They had me do a stress test and echocardiogram and they all came back normal thank God! Yes, I do glucosamine and chodroitin as well as Vitamin D. I'm trying raw honey and cinnamon on my toast every morning to try to help with the pain (some people with arthritis swear by this). I have not tried the curcumin. I will have to give that a shot. Oh and as far as my blood pressure, I monitor it and I actually was able to drop the blood pressure drug that I had to add while on the AIs.
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Cowgal: The doctors won't tell you, but I learned on one of these forums back in August 2010, that your joint pain can be managed by going gluten free. I've mentioned it to my onc, who was intrigued, but since there wasn't a "study" on it, she won't recommend it to her other patients. Honestly, I was on Arimidex from January 2010 and by August, I was in so much pain that I considered going off the med...Horrible hip, knee, hands and foot pain - foot pain was like I was walking on glass - not conducive to the exercise we are encouraged to perform. Then I read a post by a lady on here that said that she went gluten free and the pain went away. I thought: I'll try that - I'll try anything at this point! It took awhile for the pain to go away: hips 2 weeks, knees a month, hands and feet took TWO MONTHS! And now, if I inadvertently eat gluten, the first thing to feel pain is my hands. It's really not as bad as you'd think - ya you can't eat a lot of pastry and bread - but really - do we really need pastry? And there are some surprisingly good GF bread out there so you can at least have some toast in the morning. My onc thinks that maybe, where I do have some arthritis in the family, that maybe the AI brings that out. It was just a theory on her part...
I thank GOD every day that I am pain free that I found this discussion board and that posting on going gluten free.
Now I'm going off the AI in January and I wonder if I can go back to eating gluten? Do I really want to? After reading about what Monsanto has done to the wheat seeds and the fact that the farmers spray their crops with Round Up before harvesting - what the heck does THAT do to our bodies? I already avoid any dairy fat, beef and of course, gluten. Oh, yes, I have an interesting diet - lol...
I wish you luck in ridding yourself of this pain in your knees - it really sucks when you just want to feel as normal as possible after being diagnosed with BC - you know, the "new normal"...
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Thank you for your reply ritaz. I did try going gluten free a couple of years ago for about two weeks but saw no change. Maybe I did not try it for long enough. Also, I am a farmer and a rancher and we do not spray our wheat with Round Up before harvesting. We do not use Monsanto wheat seed either, it is currently planted to a Texas A&M variety.
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Cowgal - I stopped taking letrozole two months ago ... I had terrible pain on it and also on anastrozole. After taking AIs for 3 years and 3 months, the SEs were getting WORSE, not better. My onc. said I could stop as it had become a quality of life issue. But, she said if I still had pain after 2 months after stopping, I must start taking it again because the pain was caused by something else ... It has been two months and a bit and I have much less pain ... I can sleep again and my heart doesn't start beating like crazy at 1am every morning for a few hours ... I look forward to feeling much better as time passes. I am definitely thinking about taking the gluten free route! All the best and I hope you feel much less pain, soon! I never expected to feel so rickety at 52 ...
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SoLinda - I am seeing some improvement. While I still have pain in my knees I am able to most days not look so crippled. My left knee now goes almost nearly straight but I still can't straighten my right knee. I am wondering if I have lost range of motion due to so long on the AIs with the bad joint side effects and may need to get some physical therapy to get the ROM back. I also wonder if something else may be going on but it seems like I have to get to the 6 month mark before anyone wants to see if there is something else going on in those knees besides the AIs. Also, in my searching for information on this subject I did come across something that showed that they were thinking that women who had not been menopausal for at least a couple of years before starting AIs seemed to have a higher risk for the extreme joint pain that you and I experienced. In my case, I was diagnosed with bc at the age of 46 and not menopausal and was put on tamoxifen. After about a year on tamoxifen and having a blood clot and uterine wall thickening that required me to have an oopherectomy and thus made me surgically menopausal at that time, I was put on AIs. I agree, I never thought I would be so rickety at 50 either. I'm still hoping I can get back my mobility that I have lost.
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Cowgal - wow! That is interesting about the possibility of women who had not been menopausal at time of starting AIs being at higher risk for joint pain - it makes sense! I, too, was not menopausal when I started taking Anastrozole (I was 47 when diagnosed with bc) and within two weeks of starting Anasty, had trigger thumb which didn't disappear for a year! And because I had had a pulmonary embolism one week after my last chemo (oh, what luck) I wasn't allowed to even look at Tamoxifen! Switching to Letrozole made no difference whatsoever. It is scary being taken off AIs completely, especially since I was also taking Warfarin at the same time because of a higher risk of having another PE while on an AI. But, I am feeling much better except for migraines. I guess time will tell when I have my 6-month check-up in March! Have you tried swimming? Marching up and down a swimming pool has been the only exercise I could do without too much difficulty. Last week I bought an exercise bike coz the ad said it wouldn't be hard on my joints (and it's true). I sure hope you find out what's going on and that you get your mobility back!
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SoLinda was the bike you bought a recumbent bike or something else? I'm glad that you are doing better. I don't have access to a pool but we have discussed possibly a water spa large enough to do water aerobics in but I have not been able to find any dealers for those anywhere close by. The hot tub dealers in our area told me that I need to go about 3 hours away to find anyone who might carry what I'm looking for and we really do not get away much as we farm and ranch and have a sick relative right now we need to help with.
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Hi cowgal
Is there any chance of you posting a link to the info you read about ..."something that showed that they were thinking that women who had not been menopausal for at least a couple of years before starting AIs seemed to have a higher risk for the extreme joint pain that you and I experienced"?
I have been on Tamoxifen for a year and am having enough problems with it for my MO to offer me ovarian suppression and and AI.
My instincts are telling me to tough out the Tamoxifen problems and not trade them for an even worse lot of side effects on an AI but I would like to have some actual research and not go on just instincts.
Feeling so old so young is a challenge to say the least.
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Bounce, I will keep looking for that story. It was just a sentence or two in a bigger story so it is kind of hard to find but I will post it when I get it located. I knew I should have printed if off at the time.
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Hi Cowgal - just saw your message as I haven't been on this site for a while. I am so glad you are feeling a bit better! Yes, the bike I bought is a "recumbent" - stationery one which I park in front of my computer and watch something on Netflix while I am pedalling ... It is wonderful! No pain in either my knees or feet! The pool is great, but being in it during rainy season isn't much fun with water continuously in my eyes. No such excuse with an exercise bike - you can get on it any time you feel (no dragging yourself to a gym) and it doesn't hurt! It is now 3 months since I stopped taking AIs and the pain is so much less - almost gone! I went to my regular dr. last week because of the migraines and he gave me an overall check-up. My cholesterol level has gone down a lot!!! It is still high, but I am happy about that! But, I apparently now am pre-diabetic in spite of my fab. diet. There appears to be some sort of a connection between people with breast cancer and diabetes ... If you haven't had your glucose levels checked since you stopped your AIs, I would highly recommend it!!!
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That is interesting about the diabetes/breast cancer link. I actually just had my glucose and some other things checked because I had recently been put on a drug to help with swelling by a cardiologist and I happened to look on a medicine app on my phone and saw that this drug had a severe reaction with one of my blood pressure drugs that I was put on while taking AIs. I called my family doctor to see if this was correct and he made me do a fasting blood test that checked glucose, cholesterol, potassium and a few other things to make sure I had no damage from the new drug, which I stopped taking. When I saw the results of the tests, I was surprised that some of them were much higher than they historically have been. I decided I had better get going on a low glycemic diet now to prevent anything further.
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SoLinda - you sound like me. I was on Femara for 3.5 years. I tolerated the drug quite well up until 6 months ago. The side effects became unbearable. Exercise did not help where it once did. It got so bad, I was unable to Christmas shop. The top of my feet and my knees were very painful and stiff. The joint on my right pinky is inflamed as well as a couple of my joints in my toes. It definitely became a quality of life issue. My Onc agreed and recommended for me to come off of Femara for three months. She believes the side effects will clear up. She will then prescribe Arimidex or Tomoxifen depending on how I feel the next time I see her.
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Very good discussion of the side effects of AIs. Interestingly the article does not recommend Anti inflamatory drugs.
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Hi Cowgal - so glad to hear you are going to go on a low glycemic diet; it can't hurt ... Like you, I also see a cardiologist because after my chemo and a few months on anastrozole, I started getting really, reaaaaallly breathless - and it turned out I had arrthythmia, which is now treated with a beta-blocker. Since I went off Letrozole, my blood pressure has gone so much lower than usual and is staying that way even though I am now taking a very low dosage of atenolol. At least my cholesterol level has gone down and I hope it continues to do so!!! My regular dr. wants me to try taking a new statin to lower my cholesterol more, but so far - I am resisting ... I have tried taking 3 others, and they all gave me terrible side effects ... I am hoping to combat it with more exercise which will be possible now that I have stopped taking the AI! I wonder if all this was caused by my chemo, the AIs or forced menopause - I imagine it was a combination ...
ktab96 - sorry to hear that you are having those nasty side effects and that they kept getting worse - you do sound like me. At least your dr. had the sense to give you a break and not treat you like it is nothing!!! For me, it has been three months now since I stopped taking letrozole and the pain has virtually all gone (quality of life slowly returning!) What a relief!!! I took letrozole and anastrozole and they had the same side effects. I do not miss them! I cannot take tamox. because I suffered from a pulmonary embolism right at the end of my chemo. I do not think arimidex (exemestane) is available where I live. At least when I saw my onc. in Septembe, she said there were no other AIs available for me! I do really like the fact that your dr. has given you a break.
Riverhorse - thanks for sharing the link! Definitely an interesting article. Anti-inflammatory drugs are good to a certain extent, but I believe that they could mask a problem if used for too long of a time period. I am tired, brain not working so well right now :-(
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hi cowgal, I'm so sorry your knee pain isn't going away after stopping AI I am desperate to get rid of the ear ringing after 3 weeks off AI. I am understand the frustration I have taken some of my strong narcotic to get through some nights. I don't think doctors understand the issues we have. I don't want cancer but I want to feel better already.
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SoLinda,
Where do you live that you cannot get exemestane/aromsin? This not available to anyone else? I thought it was one of the first line of three AIs? Is it that it is steroidal - like that your MO doesn't mention it?
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Meow13 - I also had the ringing of ears after going off of the AIs. I can't remember how long it lasted but it did finally go away. I looked up ringing of the ears and it appears that some drug addicts have this when they stop using a drug. I guess that is what is going on with the AI withdrawals as well. My ear ringing did return in October but I think that is because I have been battling a sinus infection that they have not been able to clear out. I am supposed to call my doctor tomorrow if my ears aren't better and he is going to have me go to the Ear, Nose and Throat doctor to get tubes put in my ears.
Riverhorse - both my oncologist and family doctor tried me on numerous different anti inflammatories and some other drugs to try to deal with the side effects and none helped.
SoLinda - I had been reading the "Sugar Blockers Diet" by cardiologist Rob Thompson (he's also the author of many of the glycemic load books) and I finally started following that this last week. Everything I have read shows that a low glycemic diet is a good approach for breast cancer survivors. On his plan, he does allow a little gluten. He also teaches you strategies to eat to keep from getting sugar spikes. It is very interesting. What I like about it so far is that you can eat anywhere and make it work.
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Hi Doxie! My onc. told me that I only had the two options which I have already taken ... I am in Brazil and Portuguese is not my first language!!! Maybe she meant I only had two options because I had had a pulmonary embolism just after chemo. and had to take anticoagulants at the same time as the AIs ... or maybe that aromasin hadn't been approved for use at that particular hospital!!! I have to go back there at the beginning of March, so I will ask her to explain then. It has been a long hard road for me having to translate everything from Portuguese to English ...
Cowgal - that book sounds just like what I am looking for!!! I have reduced my carbs and am trying to follow a low glycemic diet using various research from the internet. A book would be better and easier, I think! Thank you so much for mentioning it - I will see if I can order it online!
I had no idea about ear ringing as a side effect of AI withdrawal, but I am not surprised! I am just so very happy to be able to sleep again
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SoLinda,
Brazil is a lovely and interesting country. I've visited there a few times.
I can see that it's rather complicated with medication. Aromasin/exemestane is the lesser known of the AIs. I've had Drs and nurses not know what it was in the US. It is not the same as Tamoxifen or other SERMS. It's SEs are more or less the same as Femera and Arimidex and it stops production of estrogen, just by a different mechanism.
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Hi Doxie! I completely agree with you about Brazil being a lovely and interesting country (where did you visit?) I have lived here for 12.5 years now and love it. However, at times it can be a very challenging place to live. Especially when breast cancer "hit" and I decided to have my treatment here (I live so far away from my treatment center it is ridiculous, but the hospital is wonderful and worth it!). Since my SEs were very severe on Anastrozole and Letrozole, I am not holding my breath about Aromasin being any different. Now that my body isn't hurting and I am now finally able to sleep - I am exercising for about an hour a day and it feels good!!! Headaches and migraines have disappeared over the last two weeks ... I am thinking that this might be due to the fact that after my pre diabetes diagnosis two weeks ago, I have gone on a low-glycemic diet and I am feeling better in general ...
PS your doxie photo is beautiful (I have a 5 of them - doxies, not photos, ha ha)
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I've been to and around Rio 3x about once each decade from the 80s. I've often dreamed of living there.
Health care far from urban areas has to be difficult, anywhere. And in Brazil you've not got the road system we have in the US.
My daughter took the photo when my doxie was a puppy. That bone may still be around as she's not into them. 5 doxies would be a hoot. My daughter has two that are a trip to handle. Mine is very a mellow long hair.
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Back to a switch to Aromasin. It may or may not be better, but some women have found it to be significantly different. Usually I have minimal problems that are easy to live with, but have had flares of trigger thumb and swollen toe joints on it. A year ago it was intense muscle pain in my legs. That went away after taking NSAIDs and gin/raisin combo. Constant dry eye has changed on neither drug. Still I'll count myself as lucky.
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Doxie - can you believe I haven't been to Rio yet? The airport doesn't count ... I actually live in the Amazon region, close to the Bolivian border, so you can imagine how far I have to travel to get to the hospital in Sao Paulo!!! Normally, I fly there, but have made the drive (3,000 kms.) a few times now! It is fun that way as you get to see a lot more of the country and we take it easy - not a driving marathon (I wish the roads here were the same as in the U.S.!!!). The next time I have to go for check-ups, we are going to drive again and plan on taking two of the dogs with us, so there will be less to look after at home while we are gone. And for their company, of course! At the beginning of all my treatment I had to stay away from home (my husband got a leave of absence from his work) for one year, two months and thirty seconds (I had pneumonia and a pulmonary embolism right after my 6 adjuvent chemo treatments and wasn't able to travel!!!). I was so homesick that this was the worst part for me!
Yes, having 5 doxies is an absolute hoot! It wasn't exactly planned ... I was away having check-ups and my doxie escaped and got pregnant (the vet. thinks by three separate fathers, ha ha) and subsequently had 8 pups. I kept 4 of the pups and am now working on having them all "fixed". And we also have a large dog who acts as their aunt. It is a lot of work looking after them all, but it gives me great pleasure ... Their temperaments are all different, but they are all very loving.
As for aromasin, I will ask about it, but ... I just had so many horrible side effects from the other two AIs that I am not that interested in trying another one ... My onc. said that at least I had taken AIs for over three years, and that it was as a preventative measure. Because of the pulmonary embolism and to protect me more whilst taking AIs, I had to inject anticoagulants for over a year, and then took warfarin and had weekly and sometimes bi-weekly blood tests for the past couple of years. I stopped taking warfarin in September and I know if I do have to take aromasin, I will most likely have to take warfarin again. And warfarin doesn't combine with anything - i.e. painkillers. You are so lucky your SEs aren't too bad and that you are managing to cope with them - I hope this doesn't change for you! Mine got 100% worse at about the three year mark ...
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