I thought I'd share with you where I am up to with Lupus and my treatment.

[Maya23]

As you know I found the steroids were not for me (see previous blog where I explain how they made me want to take my own life!), the previous year I had tried Plaquanil, which I also found was not for me (made me feel extremely nervous like waking up each morning feeling as nervous as I did on exam days). So this left me with just anti-inflam painkillers as treatment. My Rheumy told me to up my dose from 250mg 3 times a day to 500mg twice a day.. but.. you guessed it .. the higher dose didn't agree with me either (very very brain foggy and unable to function with terrible gut pain). So this leaves me with only a lower dose of Naproxen painkillers to control the inflammation -and has left me very wary of drug treatments!

As you know, I like to try to treat my lupus with diet too, and I like to find natural ways to treat inflammation and it's root causes. In May I did a very strict diet (vegan, no gluten, dairy, low fat, sugar & yeast) which was brutal.. but even though I got tired of being so strict, I was able to relax is a little and I am now still have a gluten free, low fat and sugar diet and I take Turmeric capsules, Omega 3 and vitamins every day. It was shown on channel 4's "food hospital" last week that a diet rich in Turmeric (also ginger & paprika) and Omega 3 reduced the woman's ESR from 28 down to 18 in just 10 weeks! She had rhuematoid arthritis.

I've recently introduced two new regimes into my diet. We get an organic free range chicken for a roast, then I make the meat last a few more meals. I boil up the bones to make a stock which I use to make soups and stews over the following week. This is an age old healing remedy, and it's good for healing a 'leaky gut' (my Nutritional Therapist believes many illnesses originate from this). I have also started making my own Kefir yoghurt, which has lots of beneficial bacteria (like in live yogurt) but it also restricts the 'bad' bacteria in the gut too (also responsible for systemic conditions apparently).

It all sounds rather hocus-pocus I know, but I am seeing some positive results. I have found that my energy levels have increased slightly, and the pain is slightly less restrictive. However, to be fair I am self employed so I only work when I choose to and I'm able to, so this has reduced my stress load right down and I am also very fortunate to have a supportive family (husband and kids), so I think this low-stress lifestyle has a positive effect on my health.

I have managed to reduce my use of painkillers, and I am going to speak to my GP this week to see if I can come off them altogether. It was in the news recently that the brain gets addicted to them, then they become ineffective. I certainly noticed that they weren't really stopping the pain, and the pain has not increased since I reduced them down. I guess I need to make sure the GP is happy about this, I don't want to risk a flare.

Well, as you can see I am plodding along a positive path, and what helped the most, above and beyond the diet etc was accepting my limitations and then having FUN!! Getting away on holiday did me the world of good and I seem to be able to maintain a happy momentum using comedy films, tea and cake with friends, fun with family and doing things I love like gardening. It's so good to be in this happier place after a couple of years of deep darkness and depression. The lupus journey isn't all 'downs' after all there are a few 'ups' too!

[megs_tom]

It is lovely to read that someone on here is feeling better I also watched food hospital and have started taking omega 3 capsules, think I will look into the tumeric ones too! I do think stress levels play a big part in how we feel each day, unfortunately I am a born worrier and I don't think this helps!! Diet also elseems to play a big part. I have also been making sure I am eating enough fibre too. Keep up the good work and I hope it keeps on improving how you feel! xxx

[Maya23 in reply to megs_tom]

Thanks! I've been told that if you are going to take omega 3 then try and get the best you can afford because cheap ones aren't very good for you (I think it's because they are heated to hot in manufacture so that the oils lose their benefit).

I find tins of mackerel or anchovies added to a salad at lunchtime is a quick and easy way to get more omega 3 in my diet, and doesn't break the bank.

Luckily Turmeric is very cheap and easy to get hold of. You can get capsules from health food stores, but even cheaper is to just add half a tea spoon to your soups/stews/pasta sauces or eat curry more often!

Good luck -I hope you also find some benefit xx

[megs_tom in reply to Maya23]

I have already bought some omega 3 from the health shop and they were made/packaged in this country so hoping that means they are of better quality! I use tumeric quite often in cooking anyway but maybe not enough to make a difference! Xxxx

[loopy-lou]

It is good to hear of positive things. Interesting that you noted plaquenil as making you feel nervous. I get that a lot and thought it was lupus doing it to me. I never used to be like it. How good have you found the Naproxen? My GP has suggested it as a temporary measure until I next see the consultant. This is to be taken on top of the steroids and plaquenil. However, I noticed on the information sheet it says to take special care taking it with SLE. I handed this in to my GP today and am waiting for a response. I don't like taking these drugs either and would prefer natural remedies. Please let us know how you get on and if you find anything else that helps. Good luck and keep well x

[Melinda]

I have read that autoimmune diseases begin in the gut. Going gluten free has improved mine. Although the rheumatologist took me off naproxen and gave me co-codemol instead, which made me really constipated, even with laxatives. I hated taking them. I now take paracetamols instead. Glad your feeling better. Take care. x

[Tigerlily4]

That's brilliant Dryad I think "taking charge" of our conditions and making decisions about treatment, trying new things, diet etc. is incredibly empowering and helps greatly with our general sense of well-being. Like me and many with SLE you clearly have great sensitivity to drugs, which does make conventional treatment difficult. Less is always best when it comes to any kind of drug but, if stopping medication altogether, do keep an eye on your temperature. People with SLE often run low-grade fevers unnoticed, which is bad for the heart long term, and why consultants often want us to continue taking at least a "maintenance dose" of something. Great blog - I really enjoyed reading it! x

[Maya23]

Thanks for your comments and support!

Today I'm trying 'Bowen Therapy' which has helped me pre-diagnosis when I thought the pain in my shoulder was a frozen shoulder. I'll let you know how it went. I have one of those stiff-neck/glands up headaches today so I hope it helps with that too.

xx

[SLE15]

So pleased to hear you're feeling better and taking things into your own hands with a plan of action.

Good to hear a positive view on things. Keep it up! All the best.xx

[Maya23]

Thanks for your comments. I had the Bowen Therapy last week, and I have another booked for this week and next week. It was very interesting! I felt very 'high' afterwards and continued to feel good for days, it certainly changed my posture and during the treatment I felt some negative fearful emotions move out of my body. My stomach area feels very different, less tight. I'll let you know how I feel after the next two sessions.