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Sticky Blood-Hughes Syndrome Support
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Menopause

Ok you lovely ladies please can you tell me what you took to ease it whilst on warfarin x

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I was given clonidine tablets as I wasn't allowed any HRT.

I was not on warfarin - I take clexane but there is known contra to warfarin so your doctor may have adjust your dose.

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Omg... please if you find out let me know...Amy and Kelly dying together...

So happy to be of help to you, Amy😂

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i believe you can take Paxil (paroxetine) with minimal problems\risk? No harm to ask your specialist...all the best, i think its suppose to help with hot flashes and sleep

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One hintvregarding sleep: I followed my mothers advice, and bought a white noise machine. It took less than a week for my brain to train itself to get sleepy when I hear the noise. I’ve used it ever since. I also take melatonin every night Dash an MRI many years ago showed a cyst encompassing the pineal gland. Future MRIs showed that the cyst has stayed the same size, but my circadian rhythm is definitely affected by the cyst impeding the production of melatonin .

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Hi, I use natural progesterone cream, first prescribed it in the early 90's, but I am not on Warfarin. It is an off spec medication, some doctors will prescribe and some private ones, but this might not be suitable for everyone, and not to be tried unless under medical supervision. I have been on it so long, if I come off it, I feel very much worse. I must say keeping my Thryoid, D, B12, Iron and Folate in order helps me generally feel better. I am too in a hormonal phase! Grrrrr. MaryF

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Grrrrrrrrrr indeed.

Sisterhood of ,”Grrrrrrrrr” going on here.

Together strong!!!!

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Ha ha. MaryF

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I was recently put into a chemical menopause and was given clonidine to control hot flushes. It did work well and doesn’t contain hormones.

However I’m no longer in a chemical menopause after my recent hysterectomy and will have to go through it all again in a few years time naturally!

Kelly

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Lucky you! ( 😬😞)

🥵🔥🥶🥵🥶🥵🔥🔥🥵🥵🥶🥶🥵🥵🔥🔥🥵🥵.... lather, rinse, repeat.

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Ooh the joys I have to look forward to. Yippee 😂 🥵

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You get a million gold stars for doing it twice, my friend...

No one should have to....

( now listen... play that awful rock song in your head from the ‘80’s 🎼 I’ll be there...

Remember that one? As your good friend.... that might or might not be me!!!! Lol!!!😂😂❤️ Depends on how well your suggestions work for me NOW!!!!!)

😂😂😂😂😂😂. What are true friends for, eh?

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I sent an email to warfarin clinic who are kindly finding out what I can take . Will keep you updated x

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I did want to tell you, Amy, that I am in contact with a woman who shared the same APS Specialist that I do in Denver Colorado. Dr Jill Schofield, who trained and worked with Dr Hughes.

She lost part of her leg to a clot - mid way between knee and ankle.

Another doctor In San Antonio put her on the Mirena coil for birth control after the amputation. She continued to clot. Her surgeon in San Antonio called Dr Jill Schofield, and she said the renewed clotting was likely due to the coil. Even the tiniest bit will affect us if we have severe cases.

I am not even to have any creams of any kind AT ALL. No estrogen, no progesterone. Nothing. Certainly no oral medications containing hormones of any kind.

The woman I am referencing did have to have a second surgery. A bit more of the leg had to come off.

The clonadine I am interested in, as it does not have hormones. I am wondering about it’s interfering with warfarin, and possibly it’s effects on the autonomic nervous sysyem . ( early/ mild pots.) I Have this and I have my suspicions you might also. Could you ask?

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Hi Kelly , I had the coil removed a few weeks ago ,I only had it put in because of heavy periods . I got awful migraine from it so they removed it and to be honest I have been worse since they removed it 🤷‍♀️🤷‍♀️.

My warfarin clinic got in touch with the hospital pharmacy to ask there advice on menopause treatments but no reply as yet .

I’m having a lot of tests at the moment due to lots of problems but so far all have come back clear apart from low ferritin.

I am now waiting for a echocardiography again as my ticker is playing the bad palpitation game again !! Will let you know x

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Crazy how we just can’t win for trying with the APS lotto game.

Let us know what you find out. I’m so sorry to hear about the worsening migraines. ( disruption / change suddenly of hormones?)

Who knows. I’m hoping someone on your team does.

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Alarm bells are ringing when you mentioned low ferritin!

I have had a battle proving to my GP for the last 2 years that I was iron deficient, I ranged between 15-30, which was within the NHS guidelines. My transferin and haemoglobin were occasionally low but most of the time were normal.

I had constant headache, my cardiac x syndrome was constant, all my other 'normal' symptoms of APS, TOS & SS were worse.

I finally had an iron infusion in January, which initially made me very unwell, after 2-3 weeks I noticed drastic improvement - no headaches, no pain in chest etc. I now have more energy than I have had for many years.

This may not help you but worth you being aware?

ncbi.nlm.nih.gov/pmc/articl...

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Interesting read Holly . My ferritin is 18 !! If you look on one of my recent post there is a link to a vlog about my friend sally who is battling the same thing . It was her who encouraged me to have my bloods done . I’m now on iron tablets 210 x2 daily as my GP won’t entertain an infusion. When I go and see prof Hay in August I will discuss with him .

I have most if the symptoms, chest pain , insomnia, bad joint pain , hair loss . Just makes me wonder that when this all started my finger used to turn blue , I bet it was my iron but as you say 10-291 is in nhs guidelines.

What side effects of the infusion made you ill , my friend had flu like symptoms x

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Hi, in the end I emailed my Prof at St Thomas's and she arranged the infusion within a week.

My GP really tried but could not get past the NHS guidelines locally - he now has the evidence if I need help again.

I have bile acid malabsoption and my pancreas doesn't create enough enzymes which caused the low ferritin in the 1st place. I can't take iron capsules or liquid as they really upset my GI system.

Prof . Richards of the iron clinic states that anyone with >50 ferritin for more than 3 mths is failing treatment and should have an infusion.

After the infusion I had a mega flare of SS, a normal flare is like a dose of flu but this one put me to bed for a few days. Which in turn made my bloods extra thick too. I was expecting a reaction as others on here had them. I just upped my anticoagulation, drank plenty of water and rode the storm.

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I'm about to turn 55 and have decided to go through menopause naturally. Any time I was on birth control pills, I had strokes so I'm not going to risk it.

I exercise regularly and eat healthy and meditate to lower stress. That's all I can do. The rest is up to Mother Nature.

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That’s what I’m doing so far as well. What did you ever decide your nerve pain was? I went back to a post from two years ago you put on. I had just been diagnosed- I replied to you that I was having similar issues. We were having trouble determining if my pain was nerve or vascular, but it felt vascular. I had just been diagnosed with first dvt.

It turns out my pain was indeed vascular, my INR was set too low, and I was continuing to form DVT’s.

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Thanks for asking.

My pain was caused by a lack of oxygen to my radial nerve, probably due to a pinching in my neck. I don't think it was clot related.

It took two years of babying it and regular yoga classes to get it back to the point of feeling mostly normal.

I have to be careful with my neck as it tends to be stiff and sore a lot.

They pain was the worst I've ever felt and I'm so glad it's gone!

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