All Topics → Forum: Hormonal Therapy - Before, During and After → Topic: Arimidex - Coping with the SE's
Posted on: Jul 28, 2010 01:22 PM, edited Oct 12, 2010 10:50 AM by Lowrider54
Not just for Arimidex but all the Hormonals - se's are so similar so coping with them should also be similar and the remedies offered should work for any of the Hormonals - don't go away, read on if you are taking any of the hormonal treatments....
For those of us who are taking this potentially life saving/life prolonging drug, it does not come without side effects. There are some very lucky folks who don't have any...GREAT! But for those that do, lets share how we cope with the hot flashes and night sweats and stuff.
The 'Arimidex' thread covers more than just side effects and coping - there is much debate over it going generic and the effectiveness of its use. I am putting this up in hopes that new users can find the answers concerning the se's easily. Of course, please visit the Arimidex thread for more information concerning the statistics, research and controversy surrounding many of the AL's and new treatments we are being offered today.
Treatment is always a personal choice - if Arimidex is your choice, these kind folks can help you manage some of the issues that some with taking it.
I elected to take a low dose of Effexsor to aide with the hot flashes and night sweats. It worked very nicely for me. Water intake and walking assists with the possible joint pain. I eliminated as much gluten from my diet as I could (that stuff is in everything....lol) and did not experience weight gain - I did experience 'weight re-distribution' however - it seems to go to the tummy. I haven't found a good solution for that yet.
Good Luck All!
Posts 4711 - 4740 (7,357 total)
Apr 7, 2012 07:31 PM mimi1964 wrote:
Karen - hey! Yeah for you and I for the the hair loss... NOT!! As for joint pain mine developed in my knees while I was taking Tamoxifen. There really wasn't significant pain as much as there was popping and creaking and snapping in them. They do occassionally bother me especially the left one. I hope it gets better when I come completely off all meds. I did try glucosamine chondritin per my primary care doc and it simply didn't help and I stopped taking it. Those of you it helps I am so happy for.
Apr 7, 2012 07:43 PM patoo wrote:
Exercise also helps with mood. Just a brisk walk releases the endorphins which helps.
I started taking Biotin about 2 months ago but read recently that it can take up to a year to see positive results (I'm taking it for my really horrible, paper soft, nails).
spunkyboobster, I find that being on these boards can become a way of life that causes severe neglect in other parts of life so I no longer spend hours each day here. I come to this thread because of the valuable information that can be gleaned. I do the "daily" exercise thread to keep me motivated to move; post on a weekly weigh-in thread for further motivation to watch my health. One or two simple game threads and one or two prayer threads. I don't post on them all every day. Occasionally I'll see something on "Active Topics" that I may post to but that's about it. I would guess I no longer spend any more than about 1 to 1-1/2 hours on each day.
Matter of fact I'll be off in about 10 mins - my Kindle is calling.
Apr 7, 2012 07:48 PM patoo wrote:
mimi1964, sorry the gluco/chond didn't help. Did you take it, without fail, everyday for 4-6 weeks before giving up? I know it does not help everybody but it also takes lots of time to see results.
Don't forget about the Vit D3. Getting those levels up may help as well with joint issues.
Apr 7, 2012 07:49 PM mimi1964 wrote:
Patoo - yes I actually took the gluc/chond for about 3-4 months and I've been and I am still taking Vit D3 everyday.
Apr 7, 2012 07:58 PM patoo wrote:
Just goes to show how very different we all are and how our bodies react. Sorry you are having so many issues but glad you are toughing it out. Are we having fun yet?
Apr 8, 2012 07:22 AM TheDivineMrsM wrote:
My worst symptom is the tingling and burning sensation in my hands, fingers and wrists. I've been taking Arimidex since November. Lately I've been having difficulty sleeping because these symptoms wake me up; they are worse through the night.
Apr 8, 2012 12:21 PM Gingerbrew wrote:
Mrs M I too have neuropathy and I hope it doesn't get worse. I have it the worst in my feet but also in myhands. I started getting it with chemo and noticed that Arimidex made it get worse. I don't know yet if the Aromasin is effecting it or not. The electrical like feelings hurt and burn and can be very shock like. . I have had them now for about a year and a half.
Apr 8, 2012 01:37 PM chef127 wrote:
HeIlo "A" girls,
I've been lurking here for several weeks now learning about the effects of the Arimidex. It takes a great deal of strength and faith in Arimidex to continue this important step in keeping BC at bay. I've been meno for about a year now, had my surgery in Oct 2011 rads completed in March. My onc RX'ed the "A" weeks ago. I'm suffering with hot flashes, joint and muscle pain, bladder problems, high glucose levels, anxiety, virtigo and dizzy spells, neuropathy, mental fog, minor hair loss, facial hair, severe fatigue, all systems of menopause. It really sux!
The thing is I haven't even started to take the Arimidex. It's string me in the face daily. Right now QOF is tolerable. What will happen if I deplete the little bit of estrogen that is left floating around in my body <10. Frightening. The thoought of an ooph and or hyster is bouncing in my head, but the "A" is still reccomended. It seems there is no escape if I want to fight the BC or just take my chances. I'm even afraid to try the "A". I'm not a weak person?????but I'm starting to doubt myself. I keep hearing that if one AI doesn't agree with you try another.........they all the same mechanism of action. I sincerly congratulate all that are tolerating this tx. I know I should join you in taking the AI. But I am still on the fence, a scarey place to be.
I hope you all enjoy your holiday whatever it may be......Have a Healthy and Happy.
Apr 8, 2012 01:39 PM Gingerbrew wrote:
Chef, I am about a year ahead of you in treatment. I have had your symptoms and my menopause was ab out 15 years ago from hyst. My symptoms have been from chemo and some from rads. I had poor tolerance from Arimidex generic, Onc put me on a vacation from it and then onto Aromasin. I am doing so much beter with aromasin generic. The SE's no matter how difficult are better than recurrance in opinion. I wish you all the best of luck as you join us.
There is a lot of good advice here to get you going and to keep you going!
Apr 8, 2012 04:46 PM Layla2525 wrote:
suzybelle, can we form a club for "naughty" patients who won't take their Arimi? I went into this fiercely determined to take the Arimi but I just couldnt take it. I told my fiance that whats the point if I survive breast cancer now my choices are die of kidney failure or heart problems caused by the Arimi and my quality of life totally destroyed by the stuff? I have been off all vitamins and meds for a week and I feel so good now I cant believe it! I slept on my side last night for the first time since mid Feb the surgery with my side sleeper pillow. This morning I went back on my Armour Thyroid. Had same problems when they tried to put me on blood pressure meds. I kept fainting,oh that would be nice to faint behind the wheel!! Do these big pharm companies even care? The new TV commer for Cymbalta says it will cause mouth ulcers also. I think its a depression med. If the MO wants to give me about 20 more pills to stop each side effect of the Arimi,then maybe I could do it but will it harm my organs and bones in the long term?
Apr 8, 2012 11:26 PM Katarina wrote:
GingerBrew -- what are the side effects from Aromisin for you?
My onc put me on a vacation from Arimidex but I'm not going back on it. The fatigue is way too much for me to have a life. I value the AI's but there's got to be another one that I can live with .
I'm still young, or at least I thought I was. I was more infirm than my 87 year old mother when on Arimidex.
Apr 9, 2012 02:31 AM, edited Apr 9, 2012 11:16 PM by Gingerbrew
My knees hurt a little when I am getting up, my hands have a very minor ache. I get a minor headache in the AM. That is essentially it. My SE's are truely minor on Aromasin. On Arimidex the list was so long. I posted the entire list about 4 or 5 months ago. I still have neuropathy from Chemo, it has never gone away. My brain fog has lifted nearly totally. That is a huge difference. I wish you the best in your quest for an AI you can tolerate.
Apr 9, 2012 04:43 PM beau wrote:
Hi Chef and Katrina,
I am sorry to hear what you are going through! I have found Arimidex to be tough, but after a year and a half in, it is better - not great, but better. I think part of it is that my body has adjusted to the lack of estrogen, part of it is that I have adjusted some of my eating and exercise habits and part of it is getting some distance on the active treatment part of the journey (mastectomy and chemo for me).
Please give yourself some space before making a categorical decision not to take anything. You have been through so much already with the fear that diagnosis brings, surgery, rads, etc). I was anemic, had neuropathy and then had major arthritis and blues when I started Arimidex.
With my onc's help, I took meds to help me get through the first 6 months - pain pills, muscle relaxers (I have 3 herniated disks in my neck that went nuclear with the arthritis that came with Arimidex)., anti-anxiety pills,, sleeping pills, NSAIDs. OK, so not everyone is comfortable being a walking pharmacy, but I just wanted to get to the 6 month mark before I made a decision.Even with that, I took a 2 week break when I got carpel tunneil in both wrists simultaneously! (Some folks here have taken 6 weeks or longer with their onc's blessing. Supposedly, 55% of folks who quit and re-start on the same or another AI have much improvement.)
Fast forward to a year and a half later - I now take 1/2 a NSAID when needed, an occasional pain pill (long car or plane trip), and 1 anti-anxiety pill at night to help me sleep and manage my neck's muscle spasms. In my case, I am 52 with younger kids (ages 11 and 13) so that has also been a motivating factor.
Recently, I learned that the "side effects" profile of Arimidex is that roughly 33%v of folks can have arthritis while on Aromasin only about 8% have arthritis. I am actually thinking of trying Aromasin just to see if my arthritis improves since it is a constant challenge.
I don't know if my experience is at all useful to you, but I know that every step of this journey is tough. I found this thread indespendable early on when I felt overwhelmed with how old I had become, seemingly overnight. Things have improved - I am not the old me, but I am certainly feeling positive about my daily routines and way of life.
I wish you peace in whatever you decide. Best, Beau
Apr 9, 2012 07:11 PM, edited Apr 9, 2012 07:12 PM by KittyDog
I will say that my joint pain was so much better that I thought maybe I had finally gotten out of that stage. The knee pain is back this week and the only thing I can contribute it too is the LE in that leg and the fact I haven't had any motrin in three weeks. I had to stop it 10 days before surgery and I haven't gone back on it yet do to the fact I am still taking a pain pill at night. so when I get my stitches out Wed....Motrin is going back in my pill pack. I was taking 2...400mg at bedtime. It must have been helping because I am back having problems getting up even. grrr.
Oh and if he would say Wed he can do my other hand anytime...I would jump at it. I immediately got relief from the trigger thumb. The middle finger seems to be not quite right. I am thinking I will need some PT for it. It doesn't hurt just sticks up higher than the other fingers. Might be the stitches.
Apr 9, 2012 09:35 PM patoo wrote:
Beau, great post. I'm sure it will be helpful info to many. Thanks for sharing.
To those who are afraid - you are not alone and we do understand. HUGS.
Apr 10, 2012 02:44 AM Katarina wrote:
Agreed. Your post Beau was inspiriing. I think I'll ask for aromisin next visit. I just don't know how to handle the fatigue.I've been off Arimidex over two weeks now and didn't get up until 11:00am and then took a 3 hour nap in the afternoon. It's estrogen deficiency I am almost sure.
Apr 10, 2012 12:38 PM slousha wrote:
Once more you are sending encouraging and sustaining post! It means so much to all us being concerned with proceeding or giving up these therapies!
Hold on and best wishes!
Apr 10, 2012 04:05 PM LovesChristmas-Barb wrote:
I have been having problems with my right hand for the last two months. It started about a month after starting Arimidex and has persisted through my switch to Femara. I took the advice of the wonderful ladies on here and purchased a wrist splint with velcro straps yesterday and wore it to bed last night for the first time. I've noticed however, that today my wrist hurts more than it did before. Did I do something wrong or is this normal?
Thank you for any replies! I'm having a crazy day getting ready to host my mom's 88th birthday dinner party tonight. The dusting and vacuuming have been more difficult than usual due to this achy hand....
Apr 10, 2012 05:07 PM beau wrote:
Hi Usha, Katarina and Patoo,
Thanks for your kind words. I appreciate your support as well! I am just waiting until I get my second year mamogram at the end of the month before I try aromasin (just don't want to rock the boat before the 2 year mark!). I will let you know how it goes. Let me know how it is with you too.
I have had the pleasure of carpel tunnel (wrist spints are the key) as well as tendonitis in the wrist/thumb joint (a thumb splint works for this better). Where is your pain? If it running down the middle of your wrist and making your fingers numb and tingling, that is more likely carpel tunnel. If your pain is on the side near your thumb, that is more likely tendonitis.
In any event, I trip to your PCP might be in order if the wrist splints don't do the trick. Good luck.
Best to all, Beau
Apr 10, 2012 08:09 PM, edited Apr 12, 2012 09:26 PM by Bogie
I was taken off ARIMIDEX due to side effects, mostly swollen hands, wrists, feet and ankles, along with mouth sore and dizzy,sweaty anxiety. I just had another surgery due to capsular contracture around my tissue expander so It was a good time for a break. I had only been on it 3 weeks haha. Now that surgery is over and my Oncologist is starting me on Aromasin (generic exemestane). I am delaying startinguntil I heal a little more, or I'm just making an excuse cause I feel so GREAT being off the Arimidex,
I know I have to suck it up and start something again..dang thought it was just a bad dream!
I'll keep you posted on my experience with Aromasin vs Arimidex. My MO acts like no one has ever had depression or anxiety on these drug..Ahhhhhh yeah!
Apr 10, 2012 10:29 PM spunkyboobster wrote:
Bogie-Good luck on the new meds when you start them. I think it's ok to wait until you're feeling "up to it" to start. Hope your recovery from the surgery is going well.
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Apr 10, 2012 11:11 PM LovesChristmas-Barb wrote:
Thank you Beau! Actually it hurts in both spots and I have the numbness and tingling so I guess I'll be talking about it to my PCP in a few weeks when I have my checkup. I was just hoping the wrist splint would help and I was surprised when my wrist and thumb hurt even more today than it had.