I am 57 and have just stopped taking HRT after 7 years a...

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I am 57 and have just stopped taking HRT after 7 years and am plagued with hot flushes and pins and needles in the fingers. I can find plenty of guidance on the menopause and why to/ not to use HRT, but nothing offering information on what happens when you stop HRT! Help!

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  • Edited

    I am 52 had a hysterectomy at 36 and have been on HRT for 10 years and have been trying to get information about how to stop taking it. I have just been to my doctor and have to go back because she didnt know. what will happen will my skin sag,hair get thinner and will I become the depressed crying woman that I was? I just want to be a normal 52 year old woman and enjoy life.

    [i:7412af8da7]This message was automatically imported from the original Patient Experience[/i:7412af8da7]

    • Posted

      I hate to tell you this but I am 77 and was taken off HRT 3yrs ago and have suffered the menopausal symtoms all over again with horrendous hot flushes.`i had a hysterectomy at 46 and  have MS.Whilst on HRT I felt fantastic.`but since coming off ...rubbish. What the doc doesn't tell you is that you will go through the menopause when you stop HRT.I would love to go back on it and feell like me again 
    • Posted

      Hi Nancy,

      I am 67 and have been taking HRT since 38 years of age. I also had a full hysterectomy 9 yrs ago. Up until recently, I was working full time in a fantastic job, but was made redundant. I have been job hunting since then and turning up for interviews soaking wet and flustered. As I live in Malta, the weather is hot in summer and I mistook this to be the reason. After reading these ladies comments, it suddenly hit me like a ton of bricks. Due to working full time (my choice) and not having much free time, I didnt bother to renew my HRT SCRIPT.I also felt it was time to stop taking it. Over time, I noticed pins and needles in my fingers,  hot flushes , weight gain, lack of confidence and the miseries. My  skin is dry and wrinkly. These symptoms appeared about 6 months after stopping HRT and I somehow missed all the signs.  My next move is visit to GP very soon.  My best wishes go out to you.

    • Posted

      I am 66 yrs. old, and I had a complete hysterectomy in 2001...My doctor stuck a Vivil Dot estrogen patch on me the minute I came to out of surgery...I've been on them for 13 yrs.  I have been feeling fine.  The other day, I got a notice from my insurance company that they will no longer be paying for my estrogen, which is around 250.00 a month...Knowing this, I started weaning myself off of the patch.  I have now been off for a little over a week.  During that time, I have become somewhat depressed, just kind of an I don't care attitude, gained 5 lbs, probably water retention, and severe stomach disorder...I want very much to go back on the patch, but I am a retired paramedic and can not afford to pay that much for them...is there any chance that if I stay off of them and try to just grin and bare it, symptoms will go away, and I can be myself again...Otherwise, I may have to find a lake to go jump off of soon....lol
    • Posted

      Hi Carole,

      I recommend a very slow weaning if you have to come off to avoid too many side effects.    I had a break of a year and started by cutting an 1/8 off - do for 2 weeks, then a 1/4 - do for 2 weeks then 1/2 for 2 weeks and so on - takes10 weeks!   I only went back on becuse i can't tolerate meds for osteoporosis(thin bones).       I also took care of diet took supplements and tried walking alot.

      Good luck

       

    • Posted

      hi Nancy.  I'm Pauline.  I am 77 and still take HRT on and off since my menopause at 51.   I have horrendous hot flushes when I stop taking HRT which ultimately prompts me to start up again.   I am nevertheless quite anxious having taken it for so long and am scared of cancer.  I am going to stop yet again for a while but I know that the symptoms will come back fast and furious and I will go back on them again.  Natural remedies don't help at all.
    • Posted

      Carole,

      I also had a hysterectomy in 2003 and was given vivelle dot patch. My insurance company won't let me have that anymore-they want me on cheaper generic meds which I refuse. Vivelle dot would now cost about $700/month. The answer was given to me by my gynocologist. I am getting vivelle dot from Canada (meds actually come from Great Britain) for $43 per month. You can call them at 800-891-0844 and set up an account and your doctor can fax a prescription for it to 800-883-6005. It worked great for me and now I feel great-perfect health. So finally insurance companies don't rule the world. I can just pay a small amount out of my pocket.

    • Posted

      Hi Pauline, I have a similar story. I am 65 and been on Everol Conti patches on and off for 20 years and always feel awful in between. Have been off it again for 2 months and now getting hot flushes and pain in left breast which is lumpier than the right. I have always had lumpy breasts. There are so many schools of thought on long term HRT and as I am a non-drinking non smoker of normal weight I assume my risk is low and would like to go back on it for my last years. Any thoughts from you or anyone else on this?

       

    • Posted

      Hi Jean, I just turned 71, had a hysterectomy, have been taking Estradial for 10 years, feeling great, but stopped 2 months ago after my dr. said women should stop after 65. Then my gynecologist said that's "bull"! Unless you have a history of heart problems or breast cancer...so I just went back on it again. I felt like my memory was affected and was having some hot flashes. I'm staying on it.

    • Posted

      So sorry Nancy. I'm in a similar situation, 66.. Going back on Estrdiiol. Quality versus quantity for me.

    • Posted

      Hello,

      I am just turned 60 and have been on HRT since I was 48. The worst symptom for me was hot flushes and night sweats. I have come off it twice now as I had 2 knee ops and had to come off it 6 weeks before as HRT is a contraindication to lower leg surgery. I didn't wean myself off gently because the Dr. just said to stop it. After about 4 weeks the night sweats returned with a vengeance (up to 15 a night).

      Whilst in hospital, after my op, I was given a whole lot of meds. On the 3rd night after the op I  became aware that the night sweats had stopped completely. I hoped that I had gone through the menopause in hospital and this seemed like a miracle. as miracles dont happen I had to suss it out. The only med that I hadn't had before was Gabapentin. It was given to me for nerve pain in my operated leg.  I had to stay on this drug for about a week after the op but as soon as I stopped, the nerve pain returned and so did the night sweats. I asked my Dr. for gabapentin for the nerve pain and as soon as I started taking them the night sweats disappeared.  I was due to go back on the HRT by this time but decided to use this opportunity to see if I coud stay off the HRT and work through it with the help of gabapentin. It really helps me sleep. I dont seem to have any  negative side effects, though some forums indicate that others do suffer with weight gain, dizziness and muddled thinking. I'm just concerned that  the youthfulness that the HRT provides will disapper if I continue to stop taking it. I have seen some research that suggests that gabapentin taken with oestrogen is very effective, so will discuss with my dr. when I see her next week.

      I hope this is helpful to those of you thinking about coming off HRT.

       

    • Posted

      I have only been taking HRT for 3 months (50yrs old) but plan on taking it for the rest of my life if I have to. I would rather have quality than quantity at this point. I will attempt to go off at some point but if any hot flashes or heart palps come back then I am going back on. Plus it has beneficial for hair, skin, libido, mind and hair. There are many bad things in life like smoking and alcohol and if a 2mg estrogen and 100 mg progestin is bad for me thats ok because I gave up alcohol, fried foods and caffeine. I went through hell with 44 symptoms which I never knew about. All you ever hear about are the hot flashes. My remaining symtpoms are anxiety (before and after a bowel movement) but am taking 23mg of effexor which works (except during and after bowel movements-I get a little anxiety) and except around my periods then the anxiety and depression get kinda rough. I had a lot of problems with head dizziness, throbbing, thumping, buzzing and nausea but I take a vitamin, probiotic, magnesium and eats fish severeal times a week for the omega 3. I also eat great and make sure I get enough vitamin D, C. My head stuff has settled somewhat but still comes and goes. I really wanted to dies less than 3 months ago but had to pull myself together mentally for my kids and husband. I excersize and keep busy and get about 8-10 hours of sleep. Good Luck and hope this all goes away. i cannot understand why some women experience little or no symptoms and some have a terrible time. I never had depression and only minor anxiety before this and now I feel like a different person.

       

    • Posted

      I have been struggling for years with post menopause. I can't seem to get the right system or amount. I haven't gone to the pellet route because I am sensitive to slight changes in medications. Either I get too much and I am the life of the party or too little and I can't get out of bed. Mine is definitely genetic because my mom had it too but she only took estrogen so didn't have to try to balance estrogen and progesterone. I think too I didn't and don't have a good support system that my mom had with my dad. My marriage had issues which lead to divorce and my mom died right when I separated from my husband. Before this I had my gall bladder out and I havent been the same. I have had so many symptoms too. I don't know about 44 but a lot. I never really had hot flashes I was cold. I have tried to go off  but I become like a dementia patient, get sick and am a basket case. On hormones is not great but at least I can park my car. I guess I really can't go off them for life. My mom stayed on many years, then stopped, and  spent the last 20 years of her life sick. I never put two and two together until toward the end of her life and I think I told she might need to go back on the hormone but she told she felt ok. I think she meant emotionally. She had a super bacteria and neurological issues. All I know is when I go off my balance starts getting really bad. I went to see a new nurse last year and she told me we need to get you off of the hormones and I said no. I can either be raving maniac off of hormones and have no chance of dying of cancer or I can be on and be somewhat sane. My mom never got cancer and she was on estrogen alone for many years and also refused to get off for a very long time. Unfortunately I have genetic anxiety and depression so the hormone thing just made things even more fun. My psychiatrist at the time said this happens all the time. I wish someone would have warned. That is why when I hear someone say that their 50 or 60 mother has been diagnosed with bipolar or something my first thought is  hormones or thyroid issues. It does really suck when someone goes oh I didn't have any of those problems or you know you really shouldn't be taking  hormones. I think I am very close to figuring it out but it just royally p*sses me off some days. Hang in there Debbie you will figure it out. We are in it together sister. Shout out from Texas. P.S. I got to get it together because I want to get a partner before I die as god is my witness lol

    • Posted

      I am so sorry for what you are going through. I do believe we need to stick together and get the message to other women that perimenopause and postmenopause may be probematic for some women.

      This is the first month I have not had severe depression and anxiety. I still have bowel issues before my next dose of progesterone. But the last 4 months I have been terribly ill with IBS for at least 10 to 14 days of the month. This month only 3. I leveled out on 25mg of effexor and hope this will mantain my sanity. I am not sure if I mentioned I have an autoimmune disorder so i just found out i am allergic to the sun and get polymorphic light syndrome if i stay out too long. Also my thyroid levels are coming down. I am at 2.76 and will probably have another dosage change since 2 is what they aim for. 

      I highly suggest for you or any women with anxiety to get massages. My boyfriend rubs my head and neck and back every night. I fall asleep most of the time and really relaxes me. Also force yourself to exercise in any way you can. I ride bikes, garden, walk, and yoga.  I feel so much better than 3 months ago but it is such a slow process and still have rough days. 

      I do not believe HRT causes cancer. i know people who have gotten cancer and never drank, smoked, took drugs or HRT. I also read HRT is a much smaller dose than birth control and I never took birth control. I wonder why birth control isnt looked down upon like HRT? I really wish I could take all the suffering away from women who struggle. I am more empathetic now and would never tell a woman "just deal with it". I have been to hell and do not wish this on anyone. Hopefully one day someone will figure out how to make the transition easier!

       

    • Posted

      Clicky,

      It is interesting you said that because when i was still on .5 mg estrogen I would get night sweats. I started taking dramimine non drowsy with meclizine for my nausea after bowel movements and it took away the night sweats. you can purchase it over the counter. I only took 1/2 pill. I never start out with a full dose of anything. I would rather work my way up then crash on too much. I am on 2mg of estrogen now so I do not get nights sweats and do not need the meclizine anymore. The meclizine reacted with the 25mg of effexor and made me so tired at work once I almost passed out several times. The two together worked like a sedative. 

    • Posted

      Hi Pauline, I am 67 and had to stop taking Tibolone a few months ago because of thickening lining of my uterus.  Since then been having the dreaded hot flushes again.  I was on HRT for 22 years, since 45 and it was great.  I walk daily, cycle when the weather permits, do small weights now and again and find it does help to take as much exercise as possible.  So far not too bad but a positive attitude helps, so keep your chin up and think positive, don't let the symptoms rule your life please.  Elsie.

       

    • Posted

      Hi sn21848...you sound similar to me..although im right at this moment trying to devide wether to take hrt patches or not..i dont have hot flushes either..nor vaginal dryness..but suffer from terrible mood swings..literally within minutes of each other!! Also have digestive problems..brainfog!!! ...anxiety and heart flutters..which really scare me! I just feel so down...ive lost my mojo!! Apparently im post memopausal..stopped my periods 2 yrs ago..was fine before that..i have a partner who is 14yrs younger than me..hes my rock..cant believe someone his age..(and male!) Can be so understanding..im so lucky! But the down side is i struggle to keep up with him..dont want to let him dowm..but i just cant be bothered with socialising at the moment..ive also put 4stone on!! Nightmare!! Im sure that doesnt help sad so glad to be able to speak to others and vent!! Hope you are well...and hows the hunting for a new man going?? By the way im from Harrogate..England xx
    • Posted

      Hi Elsie,I am also 67 and have been on HRT for 28 years (Elleste Duet Conti). The reason I came off, about a year ago I was hemeraging, it was a thickening of the womb that caused it. I went back on HRT because I felt it was good for me even though the doctors have been trying to get me off it for years. I always call it the wonder drug! However after 6 months it happened again but worse, same reason but no cancer, so I decided to come off altogether that was Christmas

      2016. I have since experienced all the symptoms of the menopause but from day one of coming off I have been taking vitamins to try to replace the effects of the hormone. Good and I took a positive attitude towards it, however six months on I find joint pains not just in my fingers but all over. My husband got this site up and I find that I am not alone. I didn't put this pain down to lack of ostrogen and I don't know yet, but all that I have read has made me decide to go back on to HRT, I have an appointment with doctor on Monday. Elsie, chin-up and think positive doesn't always work when the nights are spent with pain and aches and forever taking pain killers and vitamins. I never took a pain-killers until now. I do feel for all those women who suffer in this way. Getting old isn't good but you only live once, so we will see!

      rolleyes

    • Posted

      I am not sure how you cam off the HRT but I would do it very slowly. The body was probably used to it. If you need do so I feel it is better to have quality over quantity. I hope you find the correct treatment. It took me months to adjust but still not perfect. Its trial and error!
    • Posted

      Hi Patricia, well, three months now since I stopped my HRT, still having the odd hot flush but am now on Red Clover Complex which has helped to a certain extent.  The flushes are less severe and less frequent so I am happy about that.  No other symptoms except being a little short tempered sometimes.  I am cycling, walking and doing light weights a few times a week and that helps.  

      Sorry to hear you have to take pain killers, that must get you down.  I cannot take them anyway, had a problem with Ibofrophen in the past and don't like Paracetamol.  Thankfully don't need them but if you have to take them then so be it.  

      Before you go back on HRT, I must just suggest one thing.  The Gynacologist I saw in March recommended I have a Mirena Coil fitted, as that would help it seems.  Maybe you should look into that as an alternative.  It thins the lining of the womb amongst other things.  My eldest daughter is a GP and she said they are marvellous.  Just a suggestion, as the longer you take HRT the bigger the risk of Cancer.  

      All the best to you.  Elsie.  

    • Posted

      Hi Elsie,

      this information makes me wonder why the doctors have not mentioned this to me. They said that they were concerned if the womb lining was 5mm or more and mine was 6 1/2mm, I haven't actually heard of a Mirena Coil.

      I was sick yesterday, I believe it was taking pain-killers, so I have had none in the last 24 hours. Pain in my hands was a severity of about 4 out of ten, which is good so I'll try not to take any more. I will mention this to the doctor tomorrow. 

      The problem is I am not at home, I am in Spain for the next month. I did wait before returning home to see a doctor but I couldn't get an appointment until the day I was returning to Spain, so I phoned 111 and saw an out of hours doctor. From what the doctor said I should now be looking for a physiotherapist for my hands. I'll see tomorrow.

    • Posted

      Hi again Elsie,

      Sorry never answered your question, it has been about 6 months since I stopped HRT and I only get the odd hot flush now and then. The doctor did not advise me one way or another whether to come off straight away or gradually come off. So I just stopped.

    • Posted

      Hi again Patricia, yes, if I was you I would look into the Mirena Coil.  My uterine lining was just 5mm so not very serious.  The Gynacologist sent me a letter recommending the coil but I haven't bothered as I just don't want any more messing about down there.  You may benefit from it though.  

      About stopping the HRT, he told me to just stop it but I had already cut down so I just went for it.  My own GP said to come off it gradually but I took my own decision.  Eventually the flushes will stop (I hope).

      About the Ibuprofen, it can affect the kidneys if taken for more than 10 days, that's what happened to me.  I had three months of blood tests until my readings returned to normal, I will not take it again.  

      I hope you get things sorted out now.  I really envy some of my friends, they had no problems with their menopause, they don't seem very sympathetic though.  It's like they can't understand because it didn't bother them.  I guess that's human nature eh?

      All the best and keep in touch please to let me know how you get on.

      Elsie.  xx

    • Posted

      Hi Debbie,

      Thanks for replying, as you can see if you read my correspondance with Elsie, I came straight off HRT because I was a little scared with the results

      of my tests and I didn't want to hemerage again. It is complicated at the moment so I don't know what I will decide. Regards Patricia

    • Posted

      Hello Elsie,

      just to let you know, I got the results from the doctor and I have ostioperosis

      nothing to do with HRT. So as far as that is concerned I am in the same position I was when I started. However these tablets I take 1 every eight 

      hours are good so I will leave it for a while.

      I hope your sweats go soon. Ann

    • Posted

      Hello again Ann, sorry to hear you have ostioperosis, I hope things will be ok for you.  I am not having too many hot flushes these days, the red clover complex is helping and the ones I am having are not too bad.  It is so hot here at the moment that I hardly notice them, going to be 30 deg C today apparently.  Oh well, crazy summer weather, going back down to 17 deg C by Thursday.  You take care, all the best Elsie.  

       

    • Posted

      Hi ladies,

      I just wanted to jump in here, regarding the coil mentioned by some of you. I am in California, USA. Please, carefully research anything! Especially the coil. There are lawsuits pending! I turned 65 July 2nd. My symptoms have been pretty awful. I had a blood clot in my lung in 2013 doctors stopped my hrt suddenly.

      2 years ago, I had a ground level fall, breaking 4 pelvic bones. The year before, I broke my left shoulder. If I had stayed on hrt these injuries most likely would not have happened. I have Neuro Bechet's an auto inflammatory disease of vascular inflammation and take oral prednisone. I have had IV prednisolosone. What is quantity without quality of life? Osteoporosis is an known and expected side effect vs I might, could, maybe, possibly have another blood clot? I am ON cumadin. My risk of clots are next to none, hrt IS considered safe. My night sweats are so bad, my cat Ashes, (that sleeps with me), wakes up with WET FUR! I THINK MY DOCTORS HAVE THAT"DO NO HARM", backwards! THE Fact IS - I am SUFFERING terribly, HERE AND NOW! BECAUSE OF A "MAYBE" HRT COULD HARM ME, WHEN IT IS IN FACT KNOWN TO PREVENT OSTEOPOROSIS?!!

      BUT DO CHECK INTO THAT DEVICE. Always research for yourself what is right for YOU! Be your own best advocate.

    • Posted

      Hi click you

      Are you still on the Gabapentin?

      I read that it can help with hot flushes on its own, so will you stay off the hrt.

      I've been coming off my patches very slowly but now after 14 weeks I'm having flushes and tiredness

      I do a lot in the way of supplements nutrition etc

      I've been on the patches for 17 yes and can't take meds for osteoporosis

      So endocrinologist said the hrt would be ok but at 69 don't want this for a posmile 20 more years!

      I'm at the half a patch stage and nothe sure what to do....GPS don't either so don't bother with them

      Endo apptmt early Oct

      Rvf

    • Posted

      Hi Debbie1226

      I know it is 7 months since you posted, I wanted to check how you are getting on. I am 50 and have been on HRT for 3 months now, I went on it for same reasons, anxiety low mood not sleeping no sex drive, but I keep thinking about being on hrt and I still feel low on it, some days I feel really good thenndip . Have I not given it long enough?? Thank you

    • Edited

      I was off HRT from April until September of this year. Worst 6 months of my life. I had been on it for maybe 29 years. I went back on every other day instead of everyday and it took about 2.5 months before I finally got rid of the hot flashes, night sweats, increase in urinary urgency, lack of sleep, etc. I feel so much better now. If my doc retires, which he could, I hope I'll have a replacement gyn who will support me because I don't think I ever want to come off it. If I have to I'll come off it very slowly. But why should I? I feel so much better now. Unless I have more monthly cramping  problems which I was having, which I mentioned in another post, I have not had this problem on an every other day, they did not reappear, at least not yet. I think my body has adjusted to the new schedule.

    • Posted

      Hi Debbie. I have been on then for 4.5 months now. The first three months couldn't be happier. But since the 4month I'm so tired that I spent two to three days in bed I can't get myself out. I've got headaches I've got something going on with my right eye. My appetite has just gone downhill. Im feeling crap. Not saying that you might feel like that because everybody's different. Just don't get too excited just yet. I'm now going to go and see my doctor to see if I can come off them.

    • Posted

      My problem partially has been the progesterone. It seems my body is not to keen to it. I didn't have as much problem when I had my own natural high estrogen and I was on birth control but now it causes me some issues. Fatigue and crankiness. To take just estradiol is suppose to be dangerous. My mom never took progesterone because she had to remove her uterus because of a grapefruit size benign tumor. She never had to deal with progesterone. I have tried several times to go without estradiol and immediately my intestines start cramping up and I have a burning sensation that goes from my throat all the way down and finally joint pain. I am down to a really low dose I think because of all the natural stuff I am taking to boost it but I can't figure out what to do. I thought for sure my thyroid would tank after stopping my med for 9 days but it seems my thyroid is doing pretty good. My mom had thyroid problems too. I have no idea exactly what I will be doing but this has been going on for 9 year now and the dementia type symptoms are starting to really p**s me off.

    • Posted

      Oh i forgot to say I haven't had hunger pains for years either. I have been taking fenugreek, flax seed and chinese yams. Not all on the same day but whenever I want to switch otherwise it gets boring. All of these are documented scientifically to boost estrogen. I eat all of them raw. On the Chinese yams make sure they are Chinese yams because they are the only real yam that can be eaten raw. The other ones you can't. The thing about the Chinese yam was my skin texture started to really improve but got a bit tired of them and took a break. All of these you can find scientific research on at clinicaltrials.gov and other sites.

    • Posted

      Hi Patricia, I don't know if this is the same issue, but all the years I was on a sequential oral HRT (called in the US, premphase,) I had no problem with progesterone part of the month. As an experiment, my gyn wanted me to go on estradiol I think for 3 months, then add (generic?) progesterone for something like 6 or 7 days.  After the 3 months I started the progesterone, the 2nd day, I didn't feel great but didn't know what it was. I thought maybe I caught a stomach virus. by the 3rd day my vision was blurry, I felt dizzy and I could not get upstairs with out help. I told my gyn and we stopped it, and then I went back to the Premphase and this did not occur again. I did read online later on that some people have this reaction to progesterone, but it must be a different kind than what is in the Premphase. 

    • Posted

      I just looked it up. It seems to be a synthetic estrogen. I tried the combination estradiol and progestin patch which didn't work. I had less problems on birth control before I went off but I did take a progestin birth control when my daughter was young and it made me very angry. What got me thinking about the progesterone being the issue was watching my daughter after she went on birth control. She started to have rage so bad she was getting angry at people walking to slow in a parking lot while she was driving. I looked up her birth control online and it has a lot of progesterone but not much estrogen. We switched her to a higher estrogen and lower progesterone and she kissed me the next day. Prior to that she was angry if I breathed. I still think she needs to go lower on the progesterone but I can't convince her. I believe that I might be converting the progesterone into testosterone. For some reason I have high normal testosterone especially if I don't take estrogen. The natural progesterone makes me sleepy, dizzy and my mind foggy. I joked with my obgyn that I think my body doesn't like natural hormones. 

    • Posted

      Where do you get Chinese Yams? I haven’t seen these in Rochester NY
    • Posted

      I get them at a store called Hmart. It is a national korean american grocery store and also 99 ranch sells them which is a chinese american grocery store. Most asian stores sell them. They are also called Nagaimo yam in japanese. I believe you should be able to order some on amazon.  Looks like on amazon you can buy the seeds too. Looks like there are quite a few in the New york city area. They might ship in state. 
    • Posted

      wow and you still have hrt. My mom stayed on a long time. She refused to get off. I wish she was alive to find out how old she was when she stopped. She later went on thyroid medication. All I know is that she went from pretty good health to progressively worse health without an clear answer. The doctors thought she had parkinsons but they scanned her brain before she passed away and she did not have it.

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