I know hair loss is the least of problem when it comes to lupus symptoms but I find it depressing a bit that my hair loss is beginning to look more obvious now and it bothers me...as it is visual.
I just listened to a fascinating and informative episode from BBC 4 radio I Player (Sliced Bread) and heard that oestrogen tincture (regular consumption) has proven to be effective for preventive further hair loss (not regrowth). Clearly playing with hormone is a serious issue with lupus condition but since menopause does naturally decrease this hormone, it may not be a negative. I wonder if anyone has ever tried it. I would be grateful for a feedback. I will, of course, ask about my Rheumy before I do anything...despite risking to come across a bit vain! 😂
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Paprika60
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Hello Paprika60. Hairloss is not trivial. Lupus and inflammation and medications affect most of our hair to some degree. I would equate it to an actual death of a body part that requires grieving before acceptance. It is the inflammatory attack on our hair follicles. It can affect your entire body;not just your head. I’m not familiar with estrogen tincture. I have been taking low dose estrogen since my mid fifties and it had no impact on hair growth. In a healthy person I think it very much does. Similar to pregnancy. I had gobs of hair then. If you do find something that works let us know! Good luck. MM
Hey Paprika60, 👋🏾I do not think you are being vain at all, and did listen to BBC4 Sliced Bread podcast.
I have not used Oestrogen Tincture.
I myself use HRT Oestrogel and it is not only wonderful for hormones, my hair has grown so beautifully 🙌🏾 noticeably for family members/friends to comment.
It can not be a coincidence that before taking using Oestrogel, my hair was flat, dry, brittle especially around hairline.
Also, I have changed my shampoo too. Neutrogena T-Gel 2in1 Anti-Dandruff shampoo & condition with a gentle Melon & Jasmine fragrance. Prescribed by my GP.
I've been using Oestrogel for one year. I am 51 years old. Prior to this used Everol 25 patches and saw no improvement with hair.
I literally apply to inside of each thigh every morning 😇 I wish 🤞🏽 you all the best 👍🏾
Thanks for this very positive response! I did hear about Oestrogel in passing remarks on Women's Hour but didn't pay any attention as I thought I wasn't allowed to consider HRT due to Lupus (my doctor didn't want to go there). I am to see my Rheumy in a week's time and I will discuss this with him. What is the name and the level (if they vary)? Who prescribes this, your GP or Rheumatologist? Have you noticed your energy level improving with the gel as well? I even had my morning cortisol level checked and it came out normal so I am trying to figure out if there is another way to improve my energy level...I know ultimately it is due to Lupus but we all have to do our bits to improve our condition. I walk daily and do bits of weigh lifting and exercise but it is obviously not enough. Thanks so much once again for your encouraging response!! Take care.
Hello there, from my experience the hrt & lupus thing is really dependent on who you talk to. For a long time my rheumatologist said it was ‘a quality of life issue’ and he wasn’t keen on me having it. Recently I went to a lupus talk in Cambridge and again, it was a no no. Went into London for a general health check (through husbands work) and the GP was a menopause specialist, aghast that I had recieved this advice. Lupus is not one of the 5 contra indications for hrt. She sent me on to Dr Haitham Hamoda (head of British Menopause Society). He has worked with many lupus patients through Guys and St Thomas. So …. Basically, his view was that a) I was (like you) doing plenty of exercise - walking, lifting, cycling, swimming to help myself and b) had a good diet. Therefore I had done all the basics to address the menopause.
It was his view in my case that the benefits of having hrt (I needed to restore energy levels in order to keep exercising to help manage my lupus symptoms) far far outweighed any what he described as very little researched and inconclusive effects that hormones could have on lupus. (Aside from all the other hrt benefits)
I feel brilliant on it. I can do so much more (interesting to note rowing speeds and lifting weight amounts increased a lot! 👍), and my skin and hair is so so much better.
I’m on a low dose (Lanzetto spray and a progesterone pill) and take vit c to help absorption. I also use a bovine collagen supplement to help skin and hair. Something is working - my hairdresser/beautician has commented that my hair is thicker and my eyelashes are longer/eyebrows thicker. Above all I have my energy back and can exercise to help my lupus.
I wish you all the best, and hope you find your solution. Ask around. Dr Hamoda was really good - we had a long meeting and he listened to my concerns and experiences and explained his position and thoughts very thoroughly. I felt like what I was going to do was safe and at the very least, worth trying. We started on the lowest doses possible and I instantly started to feel so much better.
How amazing! Thank you so much for sharing your experience and excellent results! My guess regarding doctors not wanting to deal with HRT is that they didn't train enough on it and have no time or interest in searching further. I will seek his Dr. Hamoda as HRT specialists are far few...even my GPs don't know a lot and they are all women! A neighbour of mine had to seek a specialist privately due to having less than satisfying help from the GP surgery. Did you manage this consultation with Dr. Hamoda via NHS referral or privately? My rheumy basically told me my loss of hair (very little eye lashes or brows for that matter) was part of Lupus and I had to live with it...and my rebellious nature will not take this as a final answer. Thanks!!! 🙏 ps That you are rowing with lupus is quite a revelation! 💪
Hi there - it was a private referral covered by a work policy. I had to go into London for the initial consult then subsequent ones were done online. I feel very fortunate to have been able to see Dr Hamoda - it has been life changing. Lupus plus menopause is a bit of a double whammy isn’t it? So many symptoms overlap as well. We don’t just have to accept it. At least having the chance to try different approaches must be encouraged.
The collagen I use is ancient and brave. A few friends use it too and also think that it’s helping their hair and skin.
As for the rowing … well I’ve just found that any exercise helps me so much. I do as much as I can BUT being careful to listen to my body. It’s taken a few years to understand 🙄 😬🙄…
Yes, it takes a lot of mistakes to learn to paste oneself! I had overdone so many times and ended up in bed for days! Thanks so much! I will chase him privately! It will be worth it. Take care!!
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