Crippled hands and fatigue

[Nancy]

Thank you so much for all of the information. I have been on Arimidex since 2005. I was doing fairly well (weight gain of 10 pounds or so) until just recently. My right hand's thumb is so painful I can hardly write. The muscle/joint pain seems to be worsening. I have a smoker's cough it seems in the winter (dry air?). I am glad to read that when I go off of this it looks like the symptoms disappear. So from the posts I'm assuming it's arthritis-like and not arthritis?

[Linda]

Angel:
I have been on Arimidex for 6 years, and two years into taking the drug I was put on Zometa infusions and it really changed my life. I am hoping I can stay on it for 10 years.

Angel wrote:

thank you all for your stories about using arimidex...I have been on it for over two years and at 59 feel like worse than my 90 year old mother....I have constant back pain and need to use the bathroom several times after falling asleep...I have joint pains where I didn't even think I had joints...and the kicker is that my latest bone density test has put me in osteoporosis land...whatever...my oncologist would not even give me the results without arranging to meet with me....I am thinking of taking one arimidex every other day so and I know the doctor will definitely not approve this...but I want to try and see if my joint pain...especially my lower back improves...good luck to all...I wish I knew what quality of life is again.

[jude]

I was on tamoxifen for 2 years and got a huge blot clot, dr said go of it straightaway. He changed me to arimidex,was on it for 3 years, got the pains and all. Now 2 years later I still have bad knee pain, neck pain, burning feet and sore muscles with a never ending cycle of leg twiches and body aches. Will be seeing dr about knee soon. I just live with this annoyance now, as most drs dont now much about the long term effects.

[Summary of articles]

I've taken Arimidex for almost 2 1/2 years, with increasing symptoms of joint pain and fatigue. When I got to the point that I felt 85 instead of 58, I cut back to taking it every other day. Eventually I talked with my oncologist about this. He said I wasn't the only one to do this. He let me continue the reduced dose for another month to see if a blood test would indicate the half dose was having the needed effect. It worked, so now I'm continuing the half dose!! I am gradually feeling better and better!
I had retired partly because of constant pain and fatigue, had looked for a one story house, and was really discouraged. Now, I don't need to move and I just interviewed for a job.
So, why would a drug company have us take more of this drug than we need? At $9 or $10 dollars a pill, I guess the answer is obvious.
Good luck, everyone! The blood test was to see if the half dose (every other day) was supressing estrogen. And it is, for now, anyway. I don't see him again until Dec.
I take a cap full of apple cider vinegar with a teaspoon of honey in a small amount of hot water each morning. I think it works because I accicentally used wine vinegar for a while and got a really intense pain in my thumb joint. Takes a while to work, maybe months but cetainly weeks
I agree that yoga and exercise help, but so does taking a daily dose of Glucosamine Chondroitin, so if you haven' tried it, give it a go. Carol
I have been taking Arimidex for 1 year and 3 months, and had all those symptoms, joint pain, colds, headaches, extreme tiredness, insomnia, etc.. But no weight gain. About half a year ago I started taking Glutamine, I believe this is the right word, 1000 mg daily, and about a month later the joint pain got much more bearable. I also have a good hour walk every day, or a 30 minute swim + 30 minute walk. Can't miss one single day of exercise. Have to keep things moving, it greatly helps relieve joint, bone and muscle pain. The first half year on Arimidex I wondered sometimes if I could get out of bed and walk, and thankfully, although painful, I was able to walk every time. I do feel much better now, though I lost the same agility I had before. But still have insomnia, and tiredness. Found some herbs that help me sleep better. Refuse to take sleeping pills.
I also drink 2-3 liters of water daily, eat no meat, which causes hot flashes with me. Try to drink natural soy milk every day, which helps.
Cathy, in my case, this is what happened: After taking Arimidex for a year and several months, and experiencing lots of joint and muscle pains, back aches, and feeling terribly tired and weak all over, begin December I started to take one Arimidex every other day. Now, almost a month and half later, I feel soo much better! I still get tired, but have much less pain in joints and muscles and back. I feel younger! I do exercise daily, half an hour swim, and a good 30-40 minute walk, without fail, no matter how bad I feel. I believe that also helps.
I have taken arimidex for 21 months. Keep a close watch on your potassium levels.
An orthopedist recommended triple strength Osto Biflex.It does help.
I have also heard but have not had it confirmed that using Arimidex for longer than 5 to 6 years does not help and in fact can contribute to uterine cancer.
I take enjoint G-C from GNC, which contains glucosamine, to help promote joint flexibility and mobility. I take 4 a day, 2 before breakfast, and 2 before dinner. I have tried other glucosamine preparations, but this is by far the most effective for me. One bottle of 120 pills lasts 1 month, it has been a life-saver for me, I highly recommend it.
I have been on Arimidex for 6 years, and two years into taking the drug I was put on Zometa infusions and it really changed my life.

[Ruth]

Can someone tell me how to find replies that someone sent to my comments? I got a link to go to - but can't find my comments or the reply.

[june]

Jacoline-mexico wrote:

<quoted text>
I have been taking Arimidex for 1 year and 3 months, and had all those symptoms, joint pain, colds, headaches, extreme tiredness, insomnia, etc.. But no weight gain. About half a year ago I started taking Glutamine, I believe this is the right word, 1000 mg daily, and about a month later the joint pain got much more bearable. I also have a good hour walk every day, or a 30 minute swim + 30 minute walk. Can't miss one single day of exercise. Have to keep things moving, it greatly helps relieve joint, bone and muscle pain. The first half year on Arimidex I wondered sometimes if I could get out of bed and walk, and thankfully, although painful, I was able to walk every time. I do feel much better now, though I lost the same agility I had before. But still have insomnia, and tiredness. Found some herbs that help me sleep better. Refuse to take sleeping pills.
I also drink 2-3 liters of water daily, eat no meat, which causes hot flashes with me. Try to drink natural soy milk every day, which helps. Am 49, was fighting breast cancer for years, and am thankful that after mastectomy-ovarectomy and radiation, cancer is a thing of the past now. My oncologist who will agree to many of his patients geting off Arimidex, says that in my case I cannot afford to get off it.

I was doing some research for a friend & read your post.You said you were drinking soy. I had to stop dringing soy & change to almound milk be cause of the estronen in the soy.

[Exdancer]

Barbara - I took Tamoxifen for two years and was doing okay, needed gabapentin to counter some of the pain. After they determined that I was now "post menopausal" they switched me to Arimidex for three years. So the total post chemo treatment is 5 years. I didn't notice most of the side effects until I went off the gaba - it has it's own side effects - but have recently been experiencing severe hand and arm weakness, pain and fatigue - not good concidering I teach yoga and pilates! Like everyone here who suffers, I want to go off it (started July 2010) but am afraid if the BC comes back I will regret that decision. Most of all I just want to be done with everything and am hopefully not creating permanent damage to my already assaulted body.

Barbara wrote:

<quoted text>]
Melena, I have also been taking Arimidex for a little over a year and am experiencing joint pain mostly in my hands. I can no longer wear my wedding ring. My finger joints are deformed looking and were not before taking Arimidex. The really bad thing is that in the palm of one hand, the tendons are swollen with a knot or nodule in the middle of my left hand. It is very painful at times and seems like my hand is trying to curl. I am experiencing great fatigue and can only work at some task half the time I did before Arimidex. I have gained about 13 pounds and can't seem to take off the weight with dieting and exercise. I have edema in my legs and especially my ankles and feet. I ask myself if it is worth taking the drug but then, I am fearful of discontinuing it. I took Tamoxifen for two years prior to switching to Arimidex. My oncologist has said that I need to take the Arimidex for five years. I thought two years of Tamoxifen counted for something and would only need Arimidex for three additional years. Well, I met a lady last week who is still on Arimidex after six years. Do you know of anyone who was on Tamoxin prior to going on Arimidex? I would love someone to contact me if they did take Tamoxifen prior to taking Arimidex and tell me what their oncologist is telling them. I have a feeling that the doctors really don't know as the drug is still new.
Barbara in Shalimar, FL

[Carolyn]

Well, aren't you rude to say that about the south. Maybe your 'old self' wasn't too nice either.

Marybeth wrote:

<quoted text>
Hi Jackie,
I quit taking Arimidex 2 weeks ago and have seen a difference already. I can see my knees again, I'm walking faster, I have more energy and I feel like my old self again. My problem is do I stay off of it or go on another drug that will more than likely cause problems. I am a 15 year survivor and 11.5 years since my recurrence. I was on Tamoxifen for 9 years before switching to Arimidex. I want to feel better but am scared at the same time not to be on anything. I still have joint pain but somehow can move faster and don't feel so crippled in the morning.
By the way... we were just in your area at the end of August. I liked Broomfield. We currently live in the hot, humid south and want to be near mountains, dry air and intelligent people. How do you like it there?
Thanks!
Marybeth

[Carolyn]

Well, aren't you the rude one! How stupid to say such a thing about the South and the wonderful people who live there. Maybe your 'old self' isn't as great as you think.
Proud Southener

[Kay in NY]

liz - Long Island NY wrote:

i have been taking arimidex for four months. no joint pain yet but black and blue marks that seem to appear out of no where and do not heal within the usual time frame. is anyone else experiencing this?

I have been on Anastrazole (generic for Arimidex) for 4 months as well and I have a few small black and blue marks that I can't explain..I have had problems w/ my legs before the medicine but I have been experiencing what I think might be sciatica in left leg but I don't think it has anything to do w/ the med.. I see my oncologist in Dec. so I am going to mention these things to him.

[Hazel]

I am on Arimidex, I hate it. I had 1mm of invasive breast cancer, had a lumpectomy and a mastectomy for it and 13 nodes out and put onto Tamoxifen, that did not lower my estrodial, so I had a total hysterectomy and oopherectomy, and put onto Arimidex. Before this I was so health, a mother of four preteen children. Now, with the Arimidex and oopherectomy I have osteopenia, probably osteoporosis now, one kidney is dead, I think my liver is damaged, I have gallbladder polyps, the other kidney is having problems, and I am full of pain, with a weight gain of 8 kilos, and I blame the arimidex, and have met other survivors with exactly the same. I feel about 90 and am struggling walking. I came off the Arimidex for seven days to see if it was causing some of the problems which it was as they disappeared and I could walk again. I went to the emergency oncologist department and asked about coming off the armidex, but they all said I was to stay on it, yet when I read the contraindications it says do not take if you have kidney problems. I dont know what to do and feel that the arimidex will either kill or cripple me but am to frightened to come off it full time, I have one more year left on it, and its hell, and for my children to see me like this.

[Fiona]

Jackie wrote:

I have been on Arimidex since January. Like others at first it was fine, however, over the past 2 months the joint pain quickly built up. I can barely walk when I first get up in the morning and my hands have trouble holding a glass of water. My doctor switched me to Femara and following the first night I took it I had the worst day imaginable - totally crippled. I felt 94 instead of 54. Enough!!! I have stopped the medication. Quality of life is more important to me than a long life filled with pain. My family agrees with me. The pain in the joints is still there but it is no longer getting worse. Has anyone else stopped the drug? If so how long before the side effects went away?

Hi Jackie
I have been pleased to read this post even though it was written a few years ago . I am wondering how you've got on- I am also 54 and have been in extreme pain with Arimidex. I have been off the drug and back on Tamoxifen for 2 months now and the joint pain and fatigue shows no sign of abating. Can you tell me how long your pain lasted after coming off the drug??
Fiona- NZ

[kmc2749]

Wanting to learn more about the side effects associated with Arimidex? Check out http://www.rxwiki.com/arimidex

[Gayle age 61]

This is my 2nd round of breast cancer. I have been on Arimadex for 5 months. It startedout with pain in my hands, then it worsened to the fingers until i started getting trigger finger. Now i have trigger finger in 2 fingers on each hand. The pain is so bad i can't sleep and it is in my shoulders, knees and feet also. I can't grip anything at night like pulling up the blanket. I barely can walk in the morning. It's crippling me and i don't want to be on it any more. I am late for work and it hurts to use my hands. I don't think there is that much proof that you are going to die immediately if you go off the arimadex. I am willing to do the Tamoxifen for 5 years. some drugs are just too strong for the body. Pain pills just mask the situation. I want my life back..............

[Rita]

I have been on Armidex now for nearly a year, and I must be having every side effect you can get with it, my hands are killing me with pain, I am exhausted most of the time, gained weight, have constant heartburn or indigestion.feel nausea most days hot flushes need I go on, I am seriously thinking of going off this drug, this is not quality of life.If men were going through these side effects, they would soon find another drug or a way of easing the symptoms. I am beginning to feel years older every week, I am 62 , I can't do another 4 years of this and then have to suffer withdrawals as well.