Sticky Blood-Hughes Syndrome Support
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Any norethisterone experience please?

Hi, one for the ladies please......

Does anyone have any Norethisterone experiences please? I have recently been suffering from extremely heavy menstrual periods but this month is like no other experienced! I have now been bleeding for 27 days in a row with no sign of it stopping yet! I understand Norethisterone should only be used with ‘caution’ in us sludge bloods so I am a little apprehensive about taking it as I don’t want to wind up with something worse than the bleeding! I am due to see a gynaecologist later this week but doubt he will have knowledge of APS. I am under a rheumatologist who oversees my APS but only get one appointment a year with her (next one September).

Has anyone taken Norethisterone short term or long term? I’d be grateful of your experiences, thank you 😀

I am aged 50 and currently only take baby aspirin to thin the blood. I am taking an iron supplement in a bid to avoid anaemia.

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I've been taking Norethisterone for years started on 3x5mg a day and currently taking 2x5mg a day with zero bleeding that's after bleeding so constantly and heavily that I was housebound and had a period that lasted 5 years non stop. The alternative was a total hysterectomy but tbh I had no faith in the Gynae's at all. Gynae's were also responsible for stopping my Norethisterone twice and twice I ended up in hospital with hypovolemic shock losing over 4 pints of blood each time. I would kill anyone who tried to stop it in the future without my consent. Sometimes things really are worth the risk but only you can decide.

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Hi Tucson, thank you so much for sharing your experience. I can see you’ve been put through the mill with bleeding issues. I appreciate that everyone’s body is different and there are known risks involved but I have reached the point where bleeding is severely restricting my quality of life. Twice in the past week without warning I have had a ‘sudden flood’ which even my usual emergency measure of incontinence pants couldn’t contain. Norethisterone could be the answer! Thank you for sharing your experiences, complete with the dose you were prescribed. Much appreciated 😀

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You're welcome, once I'd been on it a while after the second hypovolemic shock episode I also discovered the maximum dose allowed was 6 x 5 mg tablets in a day . That was given to me in hospital to take all at once and it brought the bleeding to a stop. After that I learnt to up the dose rather than risk further incidents and being admitted again. It's worked well now for years and I've been bleed free for a couple of years with the very rare smear of blood putting in an appearance with no need to increase the dose above the 2 tablets taken currently. Good luck whatever you decide.

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Hi Tucson, goodness the volume of blood you were losing is very scary! I’m so glad you have managed to be bleed free for a couple of years without resorting to a hysterectomy. I think your five year long period more than qualifies you for some bleed free time!

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I’ve had my Doctors arguing over this for a year!

My haematologist says no way and my gynaecologist says no problem!

I went with my haematologist judgement as she is the more knowledgeable about aps. My gynaecologist did eventually agree with her.

I am having my 2nd attempt at a mirena coil next week to try and stop my excessive periods. However the first attempt ended with me losing 3 pints of blood and being anaemic after the coil expelled itself.

My only option otherwise is a hysterectomy and I feel that has too many risks.

It is a risk, but it’s up to you to decide whether your quality of life is worse than taking the risk of a blood clot. Not an easy decision I know!

Good luck.

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hi Yllek, thank you very much for responding to my post. I can totally understand you taking the haematologist view over that of the the gynaecologist! So few drs are knowledgeable on APS ☹️.

Good luck with the 2nd mirena coil fitting. My rheumatologist is responsible for my APS care and she suggested a mirena coil, but I didn’t feel it was right for me at the time, although that was before I suffered this continuing month long bleed! I guess the bleeding would have to stop before I could consider having a coil fitted. Oh dear, APS makes everything so much more complicated!

I wish you well for your appointment next week 😀.

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Thank you! I hope it works well this time too.

I’m sure you can have a coil fitted whilst you’re bleeding but as long as they know it’s your period and nothing else causing the bleed.

I hope you’re sorted soon x

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Thank you 😀

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You can certainly have a coil fitted while bleeding, I had three and lost them all but I have an awkwardly placed fibroid which caused them to sit at an angle. I'd try the coil first, well I did but it didn't work.

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I had one month like that not long ago, I am on Aspirin also, I did after day 17 start back on Spatone Iron, which my GP monitored, stayed on it for 5 weeks which did the trick.... I am a similar age to you - 53 - groan, wish it would go away! I am allergic to most medication so just sat it out. MaryF

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Hi MaryF

Thank you for your reply.

I am sorry to hear you have similar issues. I do have preference for Spatone Iron myself but am wondering if it might not be strong enough to replace the iron I’m losing so I am currently taking the tablets instead, which is unfortunate as the tablets seem to cause a psoriasis flare on my scalp every time I have a course. Nothing is ever straightforward with this illness! Best wishes to you.

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I don't know anything about norethisterone but I had an endometrial ablation done years ago and haven't bled since. It's where the doctor either scalds your uterine lining with a heated "balloon" or physically scrapes out. I had the latter since my uterus is tiny (wasn't big enough to use the tool). My menstrual cycle was negatively impacting my quality of life. It was so heavy at times I'd bleed through the most absorbent tampon and pad at the same time. One night I was at a fundraiser, went in the bathroom and saw I'd bled through my light colored pants. I tied my sweater around my waist and told my husband we needed to leave.

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Hi Holley

Thank so much for sharing your experience. I totally understand the embarrassment of leaks whilst out. We r currently having a heatwave and I’m the only person I know taking out a coat, purely to tie round my waist incase I have a leak. Not a good way to live as you obviously experienced too. I am very glad to hear the ablation has been a success for you, I think that will probably be my next option 😀 and will avoid my fear of a clot taking norethisterone. Best wishes.

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