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author

Glad to hear that some readers of the Newsletter have been getting second opinions on the advice I have given. Fortunately, it has been congruent with my advice.

It is very important to check facts and get second and third opinions and check other sources. the only way you be confident about what is for real and what is fake is to do due diligence on the contents.

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Aug 16, 2021Liked by Gavin Giovannoni

Thank you so much for this post. For the last 18 months my MS seems to have worsened. I have had many problems similar to the case you describe. Perimenopause started for me at age 44 with sleep disturbance being the main symptom and this has had a huge effect on my MS. HRT has numerous benefits on bone health, brain health and in preventing cardiovascular disease(see BHF website). Life with MS is hard enough and certainly perimenopause has made it a million times harder. HRT has really helped. As Neurologists more of you need to be informed about this and how it impacts your MS patients. Please note transdermal HRT does not increase the risk of DVT/PE. Breast cancer risk is increased only slightly after the age of 51 on HRT. This risk is far lower than being obese or drinking>3units of alcohol daily. I would signpost your patients and (doctors) to the “My menopause doctor” website. Get them to download the free Balance app so they can monitor their symptoms and print off the diary to show their GP and discuss HRT with them. Too many women are put on antidepressants to manage menopause when they don’t work for this. Blood tests are often normal in perimenopause. It’s a patients symptoms that count in making the diagnosis. It’s not just about hot flushes and night sweats. Fatigue, anxiety, depression, bladder symptoms, osteoarthritis, fibromyalgia and headaches can all be due to oestrogen deficiency and treated with HRT.

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Aug 16, 2021Liked by Gavin Giovannoni

Huge thanks - this is a topic that I’ve brought up/questioned with various medical professionals for the last 10+ years!! Always to be told the same - ‘not enough research ....’ My ms has definitely deteriorated in the last 10 or so years (during menopause) and whether or not my menopause is to blame — ?? I have asked about HRT too and been told ‘no’ (without reason, investigation, etc)

So, I do think your research should be sent to Every professional connected to ms, so HRT can at least, be considered

Thanks again

Keep well /safe

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Aug 19, 2021Liked by Gavin Giovannoni

Thanks for this article! Also interesting reading the comments. I am 50 and perimenopausal with many different symptoms. Also have RRMS and treated with Ocrevus since my diagnosis a few years ago. Have tried to get HRT twice from my female GP (I just assumed she would be more sympathetic than a male!) and trying again...I have Osteoporosis already. She wants me to have a blood test for my hormones but I understand that they vary day to day anyway. I just need to persevere I guess!

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author

Yes, persevere and ask why you can't have HRT. Interesting, HRT is a well-established treatment for peri- and post-menopausal osteoporosis.

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Jan 27, 2022·edited Jan 27, 2022Liked by Gavin Giovannoni

I recently had a blood test to check hormone levels and the gp could see straight away my levels were low, so i think once they reach a certain level it doesnt matter what day/time of month it is because it will be obvious. I am about to start hrt....oestrogen gel plus a progesterone tablet. Good luck on your ms/menopausal journey.

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Hi Lucy, I eventually got there after my GP referred me to a gynaecologist! Have a low dose of HRT via patches and tablet and feeling better after 3 weeks, fewer hot flushes, so hope that continues. Had a DEXA scan last week so hopefully the Osteoporosis is OK.

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Aug 16, 2021Liked by Gavin Giovannoni

Hi Prof G

49 and menopausal from Berkshire here (sounds like a bad bio on a dating site) I am on Vagifem® 10 mcg pessary thingumy's twice a week and it seems okay. I'm not flushing too much and no more of a nutter than I've always been (I think) please sign me up for the MS-selfie information gathering work

Tracy Doust

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Aug 16, 2021Liked by Gavin Giovannoni

Thank you for this…very timely for me too. I’m 53, diagnosed 14 years ago (had it for 20). I am about to contact my GP about started HRT as my limbs and joints ache and due to the osteoporosis risk and the protection HRT can provide. Ignored the menopausal symptoms for a while as it’s easy to put every health issue down to MS. Thanks for dealing with this issue, have never found much written about it.

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Aug 16, 2021Liked by Gavin Giovannoni

Thank you for this extremely helpful and timely post. I am 53 and my spMS diagnosed in 1992. My sleep, moods and reducing abilities I have put down to MS but as I am menopausal maybe that’s more the reason. I will make an appointment with my GP. I just presumed it was a funding issue why GP’s don’t mention HRT!

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author

It is a hassle for them; they have to counsel you and potentially do blood tests and risk screening. Then there are the repeat HRT prescriptions. So for a busy GP, this all adds work. This is why a large proportion don't discuss HRT and make every excuse in the book not to prescribe it. I think it is every woman's right to have the option of going onto HRT.

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Aug 21, 2021Liked by Gavin Giovannoni

A hot topic! I am 45 and peri. I have a family history of ductal (not hormonal) breast cancer. I also have high bp and Cholesterol (all being treated with medication, exercise and diet). Hence, I am reluctant to go on HRT. I am lately suffering from an additional symptom of anxiety, I am already on 2x30mg of Duloxetine and am not even sure if it is as a consequence of having MS or if it is due to being peri. Pls help?

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author

This is a topic for a menopause expert. Ductal or intraductal tumours are generally premalignant and are usually oestrogen receptor-negative. The latter is therefore a relative contraindication for HRT. Similarly, hypertension is a relative contraindication and usually be well controlled with anti-hypertensives. I am not sure if you are aware HRT may help a raised cholesterol. If you live in the UK you are too young to be on the breast cancer mammography screening programme, but as you have had a ductal tumour you should have regular breast cancer screening as part of the breast-cancer follow-up clinic.

So what is the reason you are reluctant to go onto HRT?

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Aug 16, 2021Liked by Gavin Giovannoni

Thanks for posting. Hot flushes raise temperature and my MS has always been affected by raised temperature. Pfizer stopped making many HRT meds due to lack of demand over the last 15 years because of the cancer scare etc. My HRT med was very low dose & I have tried to find a similar low dose progesterone without success. The pharmaceutical companies need to start making a wide selection of HRT meds again as every woman responds differently to them. It's not 'one size fits all'. I told my Neurologist and GP many times that HRT improved my MS but they just smiled patronisingly. Unless I wave research papers in front of them, it's not taken seriously. Sigh.....

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Aug 16, 2021Liked by Gavin Giovannoni

Dear Prof G, how long would wwMS stay on HRT and when is it beneficial to start, is it perimenopause or once periods have ceased or can you also start post menopause? Are GP’s more likely to prescribe/refuse at one of these stages? Thank you

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author

At least 5 years and then it needs to be reassessed every 5 years. Most women stay on it for about 10 years. However, saying that I have a patient with MS who is over 70 and is still on HRT. She looks like she is 50 and that is the reason she wants to stay on it. HRT is anti-ageing.

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Aug 16, 2021Liked by Gavin Giovannoni

Many thanks for this information, it's really useful! Would your advice be the same to someone recently diagnosed just after the menopause with highly active RRMS (which may have been clinically silent pre-menopause, I'm not sure whether it is completely new)? Can you see any downsides to starting HRT in this scenario at a point where one of the highly effective DMTs seems to be working?

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author

Yes, HRT not only has potential benefits for MS but for other health issues as well. For example, bone health and it may reduce your chances of getting dementia.

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Jul 31, 2022Liked by Gavin Giovannoni

I am 57 and diagnosed with MS 18 months ago, pretty much the same time as my periods stopped and the hot flushes set in. My GP has offered me HRT but I was very uncertain and needed to do more homework on the subject. I think I will now return to my GP and take up his offer. It was the breast cancer risk which worried me as I have a history of breast cysts. Reading this and other studies have made me see despite this I will be on a fairly level playing field but it will hopefully play an important part my my MS management. Thank you for this information.

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Aug 18, 2021Liked by Gavin Giovannoni

Thank you so much for this. I'm quite angry as what was benign MS really kicked off with the menopause 8 years ago and my neurologist wasn't interested. I have a great Gp who gave me HRT when I asked after doing a bit of research 3 years after my menopause started.. The oral treatment was great but discontinued, I have tried natural treatments with no luck. Now on patches not as good as oral but safer I feel. It seems that most neurologists are overwhelmed and can only cope with following a protocol. What a shame.

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author

Pascale, it is not for neurologists to prescribe and monitor HRT. It is for them to recommend it. The GP or family doctor, at least in the NHS, takes responsibility for HRT and occasionally endocrinologists or gynaecologists. The issue is that neurologists should be recommending it.

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I know but he was not interested in discussing it. I guess I was hoping for a more holistic approach.

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Menopause most definitely exacerbated ms symptoms, heat fatigue and hot flushes are a fresh hell. Started HRT and ms symptoms seem a lot better a few months in…things are looking up. I feel positive. I’m less tired, mentally more switched on too. GP was extremely helpful via a 25 minute phone call, a great source of information.

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Wow! Thanks for some excellent advice. 5 years ago I was diagnosed with PPMS at 49 at around the same time i was informed by my GP i was going through the menopause. I didn’t consider HRT as apart from occasional hot flushes and night sweats i had thought the cancer and cardiovascular risks outweighed any benefit. My neurologist certainly didn’t make any suggestions of HRT. Then i read an article of yours about HRT and benefits for MS a few years ago and thought i had missed the boat, thinking that HRT had to be taken at the beginning of the menopause. Today i spoke with my GP with a print out of your menopause article in my hand ready to argue my case but she was in agreement theat i should be prescribed with it. Yay!!!! Can’t wait to start!

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This popped up on my Twitter feed was interested to read about it. I became peri-menopausal about 5 years ago, my cycle was all over the place, then I had my first relapse (diagnosed as CIS). I was on medication to stop blood flow at the time. I put up with the bad cycle, long period, no periods etc. Then after 2 and a half years I had a second relapse/ possibly a third. I was diagnosed with RRMS on Nov 2019. My cycle really affected my MS symptoms and I could barely function. In 2020, after discussions with my MS team, my GP agreed to put me on HRT. It has made a huge difference! I’m also on DMT too, so feeling that I’m hopefully on top of this MS monster for the time being.

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