HRT & Scleroderma

[Duck33]

Hello there,

Is anyone with scleroderma currently on HRT or had experience of taking it? And if so, did it make your symptoms better or worse? (Especially reflux which is my worst problem.) I'm currently going through the menopause - hot flushes, sleepless nights etc and wondered if I can take HRT. I've been trying to find information about this online and found a study suggesting it might be helpful, but another one said it could increase scleroderma symptoms. My next rheumy appointment isn't until the summer, so I can't ask until then, and GP doesn't know about scleroderma. Many thanks for your help.

[momo17]

You have my sympathies. I too struggle terribly with hot flushes due to menopause but because my skin involvement slowed down with the menopause I am reluctant to take anything. I even went as far as getting a prescription as I felt I couldn’t go on with the night times n then never took them. I think I wrote a post on here a while back but the response was mixed. I checked with my doctor that had no knowledge of it affecting but don’t know how much experience she had of scleroderma. I too wish we could get some clarification as I know when I took any of the homeopathic menopace etc they had copper in them n my hand flared up like a balloon so I knew they weren’t good for my condition. At the moment I’m on black cohosh which has helped a little but you’re not supposed to take them long term either.

[Duck33 in reply to momo17]

Thanks so much for your reply, and so sorry to hear you’re going through the same thing. It’s awful, isn’t it. It’s the sleeplessness that is especially hard. Makes dealing with the scleroderma stuff harder. Like you, I’m concerned it’ll make things worse. Wish there was more clarity. I’m wondering if any one who sees Professor Denton or the Royal Free team has had any guidance? Thanks again and hope you get some relief soon.

[momo17 in reply to Duck33]

Yes you too. The sleeplessness really is torture. I am awake till all the hours n then when I finally get slept the flushes wake me! I have a sleep app ‘calm’ which helps a bit sometimes but as I’m sure you’ll identify with some nights altho your body is completely shattered, there is like no sleep whatsoever In you! I think there might be an email address thru this forum questions can be put to a health professional and they can email response. I’m sure I used it once before so might be worth looking into again. Like you I’ve terrible reflux at moment so busy trying to get an appointment for that n the menopause thing has kinda taken a back seat for now. There is always something is there?

[Duck33 in reply to momo17]

Aw, definitely. It’s like spinning plates. Thanks again and hope you’re feeling better soon with the reflux. it makes life really hard. Take care.

[Misty2552017 in reply to Duck33]

Morning! I’ve been on HRT patches for over 28 years and intend to continue. I was diagnosed with Systemic sclerosis/Scleroderma with secondary Raynaud’s six years ago. I’m 74. I’m under Prof Denton at RFH also my local consultant and they both know.I think that as well as the menopause the night sweats are to do with the inflammation in our bodies. When I feel bad the night sweats are worse.

Hope this helps!

Viv

[Duck33 in reply to Misty2552017]

Hi there, thanks so much for replying and sharing your experience of the patches. Very interesting to hear they don’t seem to have made your symptoms worse and that Prof Denton knows about them, so maybe doesn’t think they’re an issue? I’ll have a chat to the rheumatologist in the summer. But thanks again for letting me know how you find them. Really useful. All the best.

[LadyTrundle]

Interesting what people have written here. I was on HRT - first tablets then patches - for 8-10 years once the night sweats and not sleeping had brought me to my knees and I was unable to function. Recently brought myself off, after which the night sweats came back with a vengeance. So have been playing around with various supplements - Menoforce sage tables, Pukka menopause (recently changed name, not sure of the new name), red clover isoflavones, Menopause and now Menopause night. Not all at once! Nothing has completely stopped them, but they are much eased - currently on the sage and just started with menopause night (though if you have a thyroid condition, check with your dr).Dr Elizabeth Price has recently done a webinar monwomen's health for SRUK - probably find the recording on their Youtube channel - and also an article in the newest SRUK magazine. She mentions some evidence of 'involvement' of oestrogen in triggering or worsening symptoms so said on balance maybe best to avoid oestrogen HRT. As my Raynaud's didn't morph into LSSc until after I was on HRT, I do wonder ....

(My GP last week queried why I came off HRT so I told her I was originally told by another GP that after 60 I should stop as balance of association with cancer and clots shoots up then, also about the scleroderma connection. She said best be guided by the specialists)

[Duck33 in reply to LadyTrundle]

Thanks so much for replying. I was actually just watching the Elizabeth Price webinar on YouTube this morning, and noticed she said she wouldn’t advise HRT as it could make symptoms worse. It’s so difficult to know what’s best, isn’t it. Especially as I seem to be surrounded by women (non-scleroderma women) currently on HRT who feel so much better. It’s really tempting to try it, but if it made things worse it would be terrible. It’s very interesting about the link between oestrogen and scleroderma…I started having scleroderma symptoms at the same time as the peri-menopause kicked in, so I’m sure it’s all linked. Wish they’d do more research into it. Thanks again for replying and for the supplement suggestions. I’ll definitely look into them. Take care.

[LadyTrundle in reply to Duck33]

Another thing that sometimes helps, when I feel a 'whoosh' coming on - usually by having a sudden ring thirst, which I my body sometimes reads and a hypoglycaemic need to eat something NOW - I have learned to do this exercise:drweil.com/videos-features/...

which distracts me and reduces the intensity of all three things.

Just need to do it every time I have a food craving, as my weight has been shooting up!!

[Duck33 in reply to LadyTrundle]

Thanks ever so much. All useful tips. Very Best wishes.

[momo17]

Awe thank you. I was mixed up earlier regarding a help line on this forum. It’s actually on the SRUK website. Email is [e-mail]. Think it is run by volunteers but your query can be passed on to a professional. I’m sure I used it before. Good luck

[Duck33 in reply to momo17]

Thanks so much. I’ll let you know if I find anything useful.

[Midgebite21]

Hi, I’m 49, started HRT patches 6 months ago. I’m on am oestrogen/progesterone patch as I haven’t stopped my periods yet. Can honestly say I feel so much better in myself. Can’t say scleroderma symptoms are any different either way but my mood and anxiety levels are much improved and generally sleeping much better. I’m also not as achy. My doctor told me that HRT is only replacing the hormones that our body is stopping producing. Your not adding a foreign substance.

[Duck33 in reply to Midgebite21]

Thanks so much, that's really good to hear. I've got a GP appointment next week to discuss it all. It would be great to sleep better. And maybe help with all the other menopause things: hot flushes, thinning hair, anxiety etc. Thanks again. Really appreciate you sharing your experience.

[SBQ1971]

Hello Everyone, so sorry for you and all the others going through the menopause at the moment. My Rheumy Consultant actually prescribed HRT for me, I was into the menopause at the time but didn't suffer too badly with hot flushes, it was mainly to help with the pain in my joints. It worked very well for me and I was on it for years and didn't come off it until my GP insisted because of the then worry of heart disease, wish I was still on them. I had an ovarian cyst removed a couple of years ago and I now have hot flushes throughout my whole body - I am 83 next week! Bit better since I went on to Amitriptyline which helps me to sleep at night.

[Duck33 in reply to SBQ1971]

Thank you so much for sharing your experiences. Really interesting to read. I’m going to talk to my rheumatologist next time I see them. Sorry to hear that you’re experiencing the hot flushes. They really are so disruptive and uncomfortable. Look after yourself, and thanks again. Also, wishing you a very happy birthday for next week. Take care.

[momo17 in reply to Duck33]

Yes, thanks if you get anywhere with it, I’d be really interested to know. I actually spoke to my rheumatologist yesterday n she had nothing to offer on the subject. She’s even female too so had hoped might have a bit of interest/understanding but clearly not 🙈 maybe someone will be a bit more knowledgeable yet🤞

[Duck33 in reply to momo17]

Oh that’s so disappointing, isn’t it. I’ll definitely report back if I get anywhere. Thanks again and take care.

[SBQ1971]

Thank you Duck , best wishes to you too.

[LadyTrundle]

For people who had followed this thread, today I had an appointment with Prof Denton from the Royal Free and was able to ask! He said: "Raynauds attacks (especially) can get more frequent and scleroderma symptoms worse when the hormonal balances are fluctuating. Which they do in menopause. In fact, there is some thought that that oestrogen can help protect blood vessel health, as well as reducing those fluctuations. So from the point of view of Scleroderma, there is no reason not to look at HRT or alternatives."

So I'm going to have a chat with my GP... if I could only go on it for a while then would have to eventually go through it anyway till the sleep deprivation etc eventually ceases, then I may as well tough it out. But some people say you can stay on patches for life...?

[Duck33 in reply to LadyTrundle]

Thanks so much for sharing the information from Prof Denton. That’s so useful and really kind of you for updating us all. It’s good to know that he thinks HRT may be beneficial. I’ve been taking Menopace Night in the meantime and it’s helped a bit, and hopefully it’s covered by what he means as alternatives. My GP is very pro HRT and she’s says she has some patients who stay on the patches for life though not scleroderma patients. It’s so hard to know what to do, isn’t it, weighing up whether it’s better to weather it all now, or take the HRT and put off going through the symptoms later. And then of course if HRT might be beneficial for us with our condition, maybe it would be good to take as a preventative. My head is spinning a bit with it all, to be honest. But thanks so much again. I’m really grateful for the information.

[Bluefingers24]

Hi I have Diffuse systemic, Ehlers Danlos and low thyroid(following radi isotopes for high.) I have been on HRT patches and mirena coil since my mid 50’s. Without these I’m insane. I’ve had some problems with womb lining but still ok at 66.

[Duck33 in reply to Bluefingers24]

Oh thanks so much for posting. And so sorry about all the challenges you're facing. Really useful to hear about your experiences with HRT, thanks. I hear so many positives. Just got to pluck up the courage to go for it. Thanks again. And hope you're keeping okay. Take care.

[Bluefingers24]

Long Covid triggered my systemic! It’s only being so cheerful that keeps me going lol.

Actually able to swim and throw pots so not so bad.

[Duck33 in reply to Bluefingers24]

Aw, that's good to hear about the throwing pots and swimming. And love the cheerful bit. Definitely the best medicine to stay positive. Thanks again and all the very best.