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Scalp pain from Arimidex?

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Are there any others who have scalp pain after starting Arimidex? I've been on this stuff since late Feb (8 months) and have scalp pain on the top of my head since then.  It is NOT constant, but there most times.  Just feels like before my hair fell out and hurts. Like someone is pulling my hair backwards, or against the grain?  ANYONE?

The doc looks at me like I'm nutty, but it's just like when it fell out.  I thought it was thinning, but my dresser says NOT. She's honest with me.  She did mention I have a colick in the back top (which I never had before that I know of, but that's something you're born with). But this is only on top, along each side and middle back.  WHAT IS THIS!?

Please, if you've had pain/hurting hair tell me!!!!!!!!!

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  • kpopperwell
    kpopperwell Member Posts: 8
    edited October 2008
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    I have been on Arimidex since May and noticed in late Sept that I had an issue with my scalp.  It started with a burning sensation on both sides of my head.  It sometimes feels like something is pulling my scalp too.  Then it started to look like I had severe dandruff.  I am seeing the dermotologist next week as this is not getting better.  If I get warm from exercising it starts to burn too.  Very uncomfortable.  Hairdresser says there is no thinning so that's good but this other has to stop.

  • OG56
    OG56 Member Posts: 377
    edited October 2008
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    Wishiwere, I started Arimidex in June and intermittently have had scalp discomfort, it is a very wierd feeling and kind of indescribable, but I was scared my hair would start to fall out! My hairdresser tells me there is not thinning so....I guess it is just a strange SE.

  • wishiwere
    wishiwere Member Posts: 934
    edited October 2008
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    That's what I'm wondering, if it is indeed from the Arimidex. I don't remember reading about it, and just worried, as you can imagine what would cause the pain. Thanks for admitting you' both feel it too!  Whew!

  • jude14
    jude14 Member Posts: 29
    edited October 2008
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    I am on the femara and I have been to the doctor with my scalp.  It itches and burns and drives me crazy sometimes.  My family doctor thought it was maybe the arthritis pills he had me on so he switched me on those to another but it is still going on.  I hate to see anyone having this but glad to no that it is not just me....I sure wish it would stop though.

  • dawnjs5k
    dawnjs5k Member Posts: 4
    edited October 2008
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    I am on Tamoxifen and have often complained of the same thing.  Mine kind of goes in cycles and right after it hurts the worst, my hair starts falling out in hands full.  I have pretty thick hair, so thinning has not been a real issue. 

    Dawn

  • Mbhatters5
    Mbhatters5 Member Posts: 1
    edited October 2008
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    Wishiwere,

    I was on Arimidex from May until early Aug. and had the exact same scalp pain and tenderness that you described.  My onc switched me to Tamox in Aug. because my periods started again.  Tongue out  Since I've been on the tamox I haven't had any problems with scalp tenderness at all.  And boy do I feel more like my old self again since being on Tamox--no stiffness or joint aches!!  I'm sorry the Arimidex is giving you such weird side effects.  It stinks!

    melissa

  • coonie
    coonie Member Posts: 2,582
    edited October 2008
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    I've been on Arimidex since May, and haven't experienced this problem----------YET! I have had other SE's though, so maybe it's a coming :)

  • wishiwere
    wishiwere Member Posts: 934
    edited October 2008
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    What relief, knowing OTHERS have this same problem!  Why wouldn't they list that I wonder? Surely others' had it too on the trials. Although maybe it was one of those that aren't 'normal' side-effects or bad enough to be a problem to health like others.  Who knows, but thank you ladies SO much for sharing this!  IT does help knowing I'm not alone. 

    I've been asking dd and my hair dresser and dh and mom to look at my scalp and see what's there, b/c I'm sure I have bugs, or a rash, or am losing hair, NOTHING!  I thought everyone was lying to me, b/c I was sure there had to be something up there causing this!  UGH!  What a horrible feeling!

    Have any of you had headaches with arimidex on a daily basis?  I wonder it they go hand-in-hand, b/c that's been one I've had too.  Not severe, except maybe 3 times in 8 months where I actually took motrin for it.  Most times, it's just there and gone in an hour or so.

  • OG56
    OG56 Member Posts: 377
    edited October 2008
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    wishiwere, I just started having the headaches again (some in the very beginning) my BS believes that the scalp tenderness and a whole host of other benign se went under reported in the trials. I think so too!

  • dmk123
    dmk123 Member Posts: 5
    edited October 2008
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    wishiwere:  I have started having constant headahes since I finished Arimidex.  I don't know what to think.  It is like a tension headache and feels like a vice around my scalp.

  • jude14
    jude14 Member Posts: 29
    edited October 2008
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    I hate that everyone is having this side effect and the headache but it makes me feel better reading these because I had no idea what was going on with me and thinking of making my doctor do an MRI on my head.  I feel better already knowing it is not just me.  I have even been using shampoos for dandruff and all kinds of thngs and it still comes and goes....I have another thing going on and that is that when I get on the pc I sometimes get dizzy and a headache.  I went to the eye doctor and all is well there and this only happens when I get on here at times.....Weird really.....all of this since going on the AI's

  • wishiwere
    wishiwere Member Posts: 934
    edited October 2008
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    Jude, dizziness isn't good.  Have you told your doc about that part?  I too, wish NONE of us had this problem, but at least we know it's not all IN our head!  Whew!  Glad to have company, as it loves to share misery, right?

    But the dizziness I had with A/C, not since then.  I did for a little while when I first start arimidex, but I thought it was maybe an antibiotic I was on at that time. 

  • wishiwere
    wishiwere Member Posts: 934
    edited December 2008
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    Anyone still having scalp pains?  Saw my onco last week and mentioned it, and he said just looked at me funny and didn't know what to think!  Gee, for this I pay $300?  WTH? 

    I can say though, the headaches have been less, and I really think that the scalp pain is less too.  Not sure, b/c sometimes they are both back, just not as often or as bad.  Hoping it's just me getting used to it all? Anyone else changing?

  • Welga
    Welga Member Posts: 88
    edited December 2008
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    wishiwere, I  get itchy scalp, I am on Femara, seems worst at night and lately they are not as severe, I dont' know if its because I stopped taking Nutricap for hair loss, at first I thought I had bugs also pretty awful feeling, I think it has to do with our hairloss problems...

  • wishiwere
    wishiwere Member Posts: 934
    edited December 2008
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    Yes, Welga, mine seemed worse at night just as when I had chemo it did too.  Putting any pressure on it, hurt it.  Seems weird, not to many get that.  I wonder if it is an aftereffect of the chemo or just the Ai?  I have a full head of hair now, but you'd think it was going to fall again as much as it hurts sometimes.  Feels exactly like before it fell out with A/C.  But, it's not falling out, or thinning, just hurting :(  And the doc thinks I'm strange I'm sure.  I was waiting for him to roll his eyes, but I don't think he did. :)

  • Welga
    Welga Member Posts: 88
    edited December 2008
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    wishiwere,

     I can't tell if its the same as when I lost them during chemo, I seem to have chemo brain. I wish I could scartch my head but don't dare to because my hair seems to be not strongly connected to my head, and afraid to loose more. My hair fall out specially when I wash them, now I realized that if I don't dry them with the towel, put lots of conditionner in it and comb them while wet they are less tangled and I pull out less hair. Like I said in another post Nutricap has helped a lot because before I would find a lot were falling and where on my clothes and everywhere just falling like leaves off trees in autom. I asked my onc if he had seen patients loose all their hair, he said no fortunatly I understand your worry. Seeing our scalp through our hair is no fun at all. Your lucky you have a full haid of hair, mine where thin to strart with never had thick hair and did not need this aggravation on top of BC and other side effects of AI.

     My hair grew back perfect after chemo, I think it's the AI causing this, they started to fall out around 5 months after starting the. My grandmother at 80 was starting to get bald on top of her head (just the same as me now) and hormones must have something to do with it.  Just my opinion. Sorry for all the spelling mistakes I'm french (Canada) reading english is easier than writing it.

  • wishiwere
    wishiwere Member Posts: 934
    edited December 2008
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    :D  Don't worry about your spelling, as I often forget to do the spell check myself and type poorly :) As for the hormones, I think you are probably right, but the scalp ache isn't something you hear about with women and hormones, you know? That's why I thought/think it's the arimidex. I certainly hope I'm not going to lose any :( But, I do know my father sister has VERY thin hair and is always asking us girls (the dd's and nieces if ours is thinning yet!? )  Like i would admit anyway! LOL

    But thank for offering any suggestions, it's frustrating to not know why the scalp aches.  Feels just like during chemo before losing it and has never stopped feeling that way really.  Seems strange the onco had never heard it before, or at least acted as though he hadn't :(

  • Welga
    Welga Member Posts: 88
    edited December 2008
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    Thanks wishiwere, my thoughts where that my scalp was itchy because my hair where falling out, or trying to grow in because of the Nutricap, also your aches never stopped, guess I must be retarded, lol, about other women loosing their hormones and not having the itchy scalp maybe it's because they are not loosing them (the hormones) as fast as we are. So many aging signs have appeared since starting dose darn AI, cannot help but wonder where will it stop!!! Yes strange your onco did not hear about this, maybe his patients are complaining so much about other side effects they neglect to talk about this one ( I did not mention the itchy scalp to my onc, just the loss of hair).

  • aug242007
    aug242007 Member Posts: 186
    edited December 2008
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    Just wanted to join the crowd.  I started Arimidex 12 months ago and now have had a couple of days of being very dizzy and a very odd tingling sensation in my scalp. 

  • TC-Chickadee
    TC-Chickadee Member Posts: 11
    edited January 2009
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    Wish - I have been having the EXACT same scalp symptoms as you first described back in Oct. - they were coming and going mostly on the sides of my head, but now feeling it on the top of my head too - I thought it was related to wearing a wig or hats etc., but looking back, I now think it did start when I started the Arimidex 2 mos. ago - DARN !!!  My hair is thick and not thinning or losing any, how is your hair doing now and are you still having the same symptoms ???

    Be Well Kiss

    Chickadee

  • coonie
    coonie Member Posts: 2,582
    edited January 2009
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    It seems like the SE's from Arimidex are literally head to toe aren't they? It makes me wonder if I can take it another 4.5 more years!!Undecided

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2009
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    Hi chickadee, yes, it's still there, but seemingly a bit less often maybe?  Kinda of feels like when you've kept your hair up in a pony/pigtail too long and you let it own and it hurts.  So hard to explain and of course,  a male doc would have NO idea what a ponytail even feels like unless he went through the 60-70's as a hippy! :D

    But in place of the scalp aches, the arimidex headaches have gotten stronger and daily again.  :(  Always something I swear.  The only any of this really lightened up was when I was doing estrace a while back.  Even the hot flashes have become hot rather than warm again ;<  The trials of arimidex....yes, 4 years 3 months seems a long way off coonie

  • TC-Chickadee
    TC-Chickadee Member Posts: 11
    edited January 2009
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    Hi Wish . . . You have described the scalp pain perfectly . . . and you made me really laugh with the Ponytail / Hippy thing !!!!!!  I'm sorry to hear you're having headaches - sometimes when I have a headache it's because I'm dehydrated and not drinking enough water (even before bc) . . . have you mentioned the headaches to your onc. ??  What is estrace ??  Hope you have a good day and Hang in there !!!!

    Be WellKiss

    Chickadee

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2009
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    Yes, and he just raised his eyebrows1  :(  Typical I suppose.  And yes, dehydration is something I've preached to others about all the time, rather than popping pills.  But I do drink a lot of water :)  Thanks..

    Estrace is a vaginal cream for the effects of drying that arimidex does to the female.  It's estrogen though and not a good idea for those positive B/C patients.

  • sushanna1
    sushanna1 Member Posts: 61
    edited January 2009
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    Wishiwere and Welga--I am so glad to read your posts.  I am on femara.  Six months after I started taking it, my hair began to thin.  Like Welga's it was always thin, but now you can see my scalp in a couple of places.  I feel like an old man with a "comb over."  I had already been in menopause for almost five years so I think it is the femara.  My oncologist agrees that the hair thinning is probably related to femara.  Now here's the weird part, my hair loss has diminished (could be because I have been using Rogaine for six months), but the past couple of weeks my scalp has itched just like when I began to lose my hair during chemo as Welga described.  It is worse at night.  I have switched shampoos three times and it still itches.  At least it no longer seems to be falling out as rapidly.  I am pretending that this means that my hair is growing back. 

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2009
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    I would think and hope it's true that the itchiing is related to 1) hair growing in, 2)change in shampoo, or 3) lack of estrogen.  My back gets really ithy since being on this chemo induced and arimidex staying lack of estrogen :(  Try an organic or shampoo that it for sensitive skiin and or no alchohol or fragrances in it.  Good luck:)

  • kam54
    kam54 Member Posts: 1
    edited January 2009
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    Wow, I am so surprised by everyone's scalp issue, because I am having the exact same thing and thought it was just me.  I have an apointment with a dermatologist to talk about the scalp issue and the major hair loss I am having.  I have been on Arimidex for 1yr 3 mo and am scared that I too will be totally bald.  My hair is falling out super fast.  I mentioned it to my onocologist and he just seemed uninterested.  I really am not hopeful that the dermatologist can do anything, but thought I would at least try.  I was thinking that the scalp discomfort was from my hair falling out, and it may be.  I too am wondering if anyone has had to go back to a wig.  I do a comb over and it at least helps a bit.  Of course I have other SE from Arimidex but darn the hair loss is what everyone can see.

  • wishiwere
    wishiwere Member Posts: 934
    edited January 2009
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    {{Kam}} so sorry you are dealing with this and I hope the derm can provide some information and help.  Have you thought about switching Ai's?  I have had less problems with the scalp pain, but it's still there.  Or maybe I just notice less?  I can't say it's thinning though. I know more when the lady cuts it in another week or so. will post then. I mentioned a rogaine to my pcp one time  and he knows I don't like to take anything and thus mentioned it would have it owns side effects ;(  So, I'm dealing with it, but as I said, I don't notice thinning, had I, I would have tried anything I'm sure b/c it' so out there to deal with (public i mean)

    I do have a lady I talked to has been on tomax but also has bone met so is on other drugs too. Not sure that might aiding in her losing so much. 

    Please post what you learn from the derm for those needing the info also?  Good Luck!

  • elisabeth
    elisabeth Member Posts: 28
    edited January 2009
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    Hi.  I, too, would like to hear what the derm says.  I have been on Arimidex for 3 months and I definitely have thinning hair and some scalp itch.  I am doing the genric Rogaine and have no idea if it helps or not.  It takes so long for it to do anything and you have to use it every day.  I agree with everyone, the hair thing should be the least of my worries, but I really want my hair.

    Thanks. e 

  • wishiwere
    wishiwere Member Posts: 934
    edited November 2010
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    Is anyone still having scalp pain from the Arimidex that started it back in 2008?  I am.  I'm due to see the oncologist this next monday and NOT happy that no answers are offered when I questioned it.  This time I won't leave till I get an answer, even if it's he does not know.....

     Hope all are doing well...