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[Penelope]

Pamb that's great news.Can you tell me how you are now on HRT.

[pamb]

Hi Penelope

I'm not on HRT at the moment.  When my rash, which was like a purple red blotchy rash, appeared, it was on my thigh, which was quite near to where I put my HRT patches, so of course I initially assumed that the patch was causing the rash, as did my GP.  I then swopped the patches for tablets, but the rash didn't subside and I was also getting a rash on the back of my hands, my chest and upper arms which were intensely itchy, and of course the scaling on my scalp, which I didn't think was connected at the time.  So I stopped all HRT but it just got worse so the GP referred me to a dermatologist at the hospital.   He immediately diagnosed dermatomyositis just by looking at my fingernail beds and confirmed it when he saw the purple blotches on my thighs.

I asked if the HRT had triggered this condition but he thought not and said I could restart the HRT if I wanted to.  I did consider going back on it because as I stopped my HRT suddenly I immediately suffered really bad night sweats, waking up every hour with them.  I'm still having them but not as badly.   

The only reason I haven't gone back onto it yet is because when my hormones are playing up quite badly I seem to get a flare up of my rash.  I used to take the combined HRT and I know progesterone is anti-inflammatory and oestrogen is pro-inflammatory so I'm not sure whether going back on would make things worse or not.

My dermatologist wanted me to immediately go on strong steroids, and a combination of other drugs to help with the side effects of the steroids, but those drugs in themselves have bad side effects too.  So I opted to try topical steroids first and see how that went.  He was surprised but agreed and thankfully the creams have worked on my body but not so much on my hands, but at least I'm not suffering the effects of all those other drugs.  In fact he was amazed when I went in for my 6 month review and I said I was feeling really well, exercising a lot and eating healthily.  He said that as I hadn't gone down the drug route that he expected me to have deteriorated.  It just goes to show that  in some cases it's not always best to go in heavy handed with these strong drugs as I'm sure I would not be feeling so well if I'd decided to go with his recommendation. 

So whether or not I do eventually go back on HRT depends on how my menopause symptoms are.  I may just decide to ride it out naturally but never say never.

pamb x

[Kathleen]

Hello again ladies

pamb - I was interested to read that you follow an anti inflammatory diet to manage your auto immune condition.
I am doing the same and  wondered how our diets compare?

Basically I eat a whole food plant based diet and avoid  processed food and animal products such as meat, dairy, fish and eggs. My diet consists of grains, fruit, beans, nuts and seeds plus legumes (peas, chickpeas and lentils)
and vegetables.
 It sounds restrictive but it's not and I have some fabulous recipes and the meals are delicious. All spices and herbs can be included and they make a big difference.

You are one of very few people who have also described their diet as  anti inflammatory and  I would love to hear your experiences of eating this way.

Wishing you well.

K.

[pamb]

Hi Kathleen

It sounds like you have a very good diet.  Mine is similar but with the exception that I still eat chicken and fish.   I haven't eaten red meat in years.  I've cut out dairy and processed foods, which I didn't have much of anyway.  I eat a diverse selection of vegetables and fruit and I try to have at least two meals a week that are purely plant based.  I recently discovered chickpea pasta which replaced the wholewheat pasta.  It's really delicious and very filling.  Maybe you could suggest a few plant based dishes that I could try as I haven't found any that I found very intersting.   I suppose I wanted to still have some animal protein in my diet as my condition has the potential of causing muscle damage, although I'm sure plant based protein is probably just as good so I'm trying to cut back on animal protein as time goes on.

I also use turmeric in my dishes and I have a portion of mushrooms every day as they are anti-inflammatory.  Another good anti-inflammatory is tarte cherry juice.  I take 30mls with water.  It's very good for gout and helps muscles recover much faster.  I also eat lots of nuts and seeds.

Another thing I take is Low Dose Naltrexone.   I discovered this by chance when I was researching my condition and a lot of people are finding it very useful in helping other auto-immune conditions too.  It has little to no side effects which appealed to me as the drugs my dermatologist wanted me to try had horrendous side effects.  It's becoming more widely known about now and there is a lot of clinical research being done on it.   It's not available on the NHS but some GPs are happy to give you a private prescription for it.  There is a compounding chemist in Glasgow that I get mine from.   I can only speak for myself but it has helped me tremendously.  You may want to look into it depending on what your auto-immune condition is – if you want any further info on it then feel free to PM me.

I also walk for up to 2 hours a day and do pilates and weight bearing exercises a couple of times a week.

So overall I think all the above is helping me stay fit and well and has helped me avoid the more severe version of this condition.  Full blown dermatomyositis is very scary.

Regards pamb x

[Kathleen]

Hello again ladies

Pamb - thanks for setting out your diet which sounds very healthy.

The autoimmune condition I was diagnosed with nine years ago is Ulcerative Colitis. It is an inflammatory bowel disease (IBD) which is similar to Crohns but UC only effects the colon and the inflammation is less severe. Still not something you want though! To confuse matters my periods stopped at the same time so I was dealing with a chronic disease and menopause symptoms together. My UC has been in remission for over six years and all my blood tests are normal as was my last colonoscopy. I take a daily anti inflammatory drug especially formulated for UC patients but the dose is a very low one for  maintenance.

I never did eat much meat and gave it up entirely when I knew I had UC. I also quickly stopped drinking milk and over time I gave up cheese and eggs as well. I have been plant based for almost four years now and I like to think that it  has helped me avoid any flare ups of UC.

Annoyingly I've just learned that I have  Hashimoto's Thyroiditis. This may have happened as a result of having Glandular Fever a few months ago and it's unfortunate that my diet  hasn't protected me from developing another autoimmune condition. I suppose it is possible that my Thyroid has been a problem for a long time and it's taken the GF virus to make it worse.

Like you I am always looking for ways to improve my health and prevent my conditions from becoming any worse.

I will look into low dose naltrexone so thanks for the tip and if you want to learn some tasty recipes I suggest you check out The Happy Pear on YouTube. If you want to include a plant based source of protein you could do this by eating beans, chickpeas and lentils, they are packed with the stuff lol.

Thanks again for your very interesting post and take care.

K.

[pamb]

Hi Kathleen

I've always thought how distressing it must be to have Crohns or Ulcerative Colitis.  It must make it very difficult to eat certain things but thankfully you seem to have found the right combination to help and recognise what causes a flare up.

I think Low Dose Naltrexone is used for Hashimoto's and some people have benefitted a lot from it.  I tried it mainly because it has little or no side effects so thought I had nothing to lose and everything to gain. 

I know getting one auto-immune condition can make you susceptible to getting another.

It also seems that it's mainly women who have auto-immune conditions.  I'm coming back a man!!!

Well best of luck Kathleen and remember to feel free to PM me if necessary regarding LDN

Regards pamb x