As you know from my previous blogs I have tried to treat my lupus with natural remedies and therapies due to having a terrible time with the drug treatments. I have been using diet as a tool towards an anti-inflammatory lifestyle, and I have had some success with this. My symptoms went fairly quiet during the colder months (Sept-Feb) where I'd only get the odd short flare. I'd noticed that I had more energy too.
Now however, since the UV levels started to rise in April I've been constantly flaring. I've had to put work on hold until the UV levels drop in September (not too difficult as I am self employed & husband's income is enough for us) and just rest and look after myself. I'm finding that I have a lot of digestive discomfort despite the diet, and this often is the first sign that I'm flaring. It's often accompanied by low mood and just feeling totally exhausted. The muscle aches and pains have been pretty horrible and I've had lot of joint pain that moves around a lot. I think I'm also getting nerve pain in my fingers and toes and that old burning pain in my arms has returned. I'm also getting regular headaches and flu-like aches and sometimes with a low grade fever.
I'm feeling rather worn down by all the pain, especially as apart from the diet, I effectively have no current treatment. I'm seeing my consultant again in the next few weeks. I know he'll just suggest more drugs, but my history of drug tolerance has been bad (I had an unpleasant reaction to Hydroxy, a terrible life-threatening reaction to steroids and digestive intolerance to Naproxen). I wish there was some natural pain killers out there that didn't give you horrible side effects. I do take the odd paracetamol when I've really fed up with the pain, but I know this is not a long term solution.
I'm currently experimenting with making home made fresh ginger tea as that's supposed to be anti-inflammatory, and it helps with the nausea and digestive discomfort. It seems to help a bit. I also use herb teas such as chamomile, calendula, and yarrow. I sometimes take Turmeric too.
Any thoughts and suggestions are welcome. Thanks!
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Maya23
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Dandelion, burdock, mint, chicory teas - plus twice a day turmeric. But I am taking hydroxy too and have just come off steroids, so although these are good things to control inflammation, they are not stopping it, nor the lupus from getting active sometimes. I know we all want to avoid drugs but you don't even have that choice, what with the adverse reactions you've experienced so far. I wonder what the doctor will say, he won't put you on something you're allergic to, it is too risky. I hope you will get something though, it is best to stop lupus as soon as it gets exercised.
I too wanted to go down the route of natural remedies and spoke to many people. I have had lupus for almost twenty years and have been having a continuous very aggressive flare for nearly two and a half years accompanied by loads of infections and all the usual other pleasantries. Unfortunately I ended up being hospitalised at the end of last year for quite a long time and came out three months ago. My skin was in a very bad state and something had infected it which caused me to be in quite a bad state and I was asked to give the traditional meds a chance to try to control things a bit.
I do however have a friend who uses Manuka honey very successfully he takes one teaspoon of it in the morning and he is almost clear of all symptoms and only takes 5mg prednisolone which he hopes to come off soon. This honey is available in some supermarkets now but only up to about active + 10 in health food shops you can get it up to active +50 it is quite expensive when you get it that strong but the lower activity about +15 is not too bad if it is going to do you good.
Good luck and I hope you find something that suits you and makes your life more comfortable
I agree re manuka: have been on anti inflammation diet for 10 yrs now, with addition of plus appropriate supplements (high dose omegas, D3, turmeric etc all prescribed by my NHS pain consultant & okayed by rheumy) 3yrs ago with fresh ginger tea (fresh from the root is best if poss) plus 2yrs ago i added to this mix manuka honey: at least 1 heaped teaspoon in morning. I am convinced the honey really is effective, especially on GI tract from mouth right through to tail! It's all so expensive, that I've stuck to the +10.
Sorry to say, though, I do need 400mg plaquenil (helping lots over past 2 yrs). And I take 20mg Amitriptyline too...+ currently on a prednisolone taper (in first of 4 wks)...and I count myself lucky that these meds seem to agree with me....for now anyway
Wishing you less pain as soo as poss, Dryad: have been following your posts with much interest & feeling for you, but can't remember: you reacted badly to hydroxy, but which form: Quinoric or plaquenil? I ask cause I refused Quinoric cause i'vecheard enough about it to know I'd react badly.
Ah, Manuka honey sounds worth a try too. Thanks for recommending. I hope its soothes my poor digestive tract that's suffering a bit at the moment. Do you take the ginger and honey before breakfast? Does it matter when you take it?
Well, when depends on what my bod seems to be asking for.....it's a trial & error thing. In a bad flare, I make huge pot of fresh ginger tea, really strong, decant thi into a glass stoppered bottle and keep it in the fridge to use like a squash, mostly topped up with lukewarm water... During rough phases, I sip this off & on all day. I never mix this ginger drink with anything: my bod seems to prefer that. No reason anyone else should follow my lead to the letter though....seems to me this is about listening to your bod, coaxing it along.....
Hi Dryad, sorry to hear that things are not good at the moment with flare ups. I too think where possible it is really beneficial to try all the natural remedies first and anti inflammatory foods/light exercise do have their place. However, I also think when the pain is too much with a bad flare I think it is also necessary to think about what damage is being done to internal organs every time this occurs. I think that's why the immunesuppressants have their benefits. People are definitely living much longer now with lupus because the medication is stopping the damage from occurring. It's a debate I have daily in my head as to whether I could manage without the meds (but I can't) and for me the simple answer is I want to be here with my family for as long as possible and the meds will hopefully give me that. It's a tricky one meds/versus natural remedies and I know which one we would all go for given the choice. However, sometimes this is just not possible and although I struggle at times with my decision to be on methotrexate I know the benefits outweigh such doubts. I hope your pain eases soon Dryad. Take care xx
Thanks mstr. I am taking some painkillers at the moment, so I hope that will calm things down. It's a really hard thing to weigh up the drugs v natural remedies, but I agree there are times when it's necessary to take the drugs. It's easy to feel like you've 'failed' in some way when deciding to take drugs! But we don't need this guilt on top of all the pain that lupus causes us. So I try not to feel bad about whatever decision I make.
I've not had any organ involvement so far, for which I feel very grateful, which has also given me a few more options when deciding what not to take. The drugs I've tried so far have not helped and only made things worse. Thanks for your kind words. x
Hello Dryad.
I thought I was managing well without drugs - using turmeric, boswellia, fish oils, Garlic, lemon juice, dandelion, ginger and camomile teas - and then I got very ill indeed (in the summer, like you). I couldn't eat, lost loads of weight, had severe anaemia - no breath for walking - and of course the ever present joint pain
This was quite a few years ago, and I had no choice but to use the conventional drugs. Some are nastier in their effects than others - and I can't exactly claim to be healthy - but at least I am functioning.
I'm sorry to be negative - but I do think you need to consider the drugs.
Hi Dryad it's me again, don't get disheartened by what you read, many of us have tried natural remedies to tame this damned illness and had different effects from lots of different things and some of us have ended up going back to the traditional meds and putting up with them so that we can make the most of our lives and have the best quality of life possible with our loved ones. I think what mstr said in their comment is very true about the immune suppressants and the damage being prevented in the first place. Since I have taken these I have managed to stay out of hospital and only take pain killers on rare occasions and lead a very full and active life. Although I am nornally very keen to use natural remedies for most things the trials on them are not the same, all the meds used for lupus have had full and extensive trials done on them and have been proven to be safe with all known side effects listed for us to recognise. Where as natural remedies can be a bit of an unknown area and cause unwanted effects when your body does not work as it should as any trials for most things have been done on healthy people with healthy immune systems lupus drugs are trialed on lupus patients, so take care and check with your doctor before taking anything or using some things as my experiences are not good and I would hate you to go through that hell. Hospital food did nothing to help me put weight back on! Keep your chin up and I hope you find something that works for you
Hi Dryad, Are you trying to do too much in a day? Have you tried asking your GP for a physio referral - I did a pain management type course at my local NHS hospital and it was very helpful. The idea was that you worked out a level of activity that you can do every day without putting yourself in to a flare, and do exactly the same every day. Then you add in a tiny amount of gentle exercise which you build up very gradually week by week; that approach has helped me a lot.
Also have you tried relaxation/hypnotherapy techniques - the ability to put yourself in to a trance like state for a short period and you can visualise your blood cells calming down and making less antibodies or the inflammation in your joints calming down, can be very helpful.
I do take conventional meds but selectively! (30 years in pharmaceutical industry so I'm quite comfortable with most of them, but always take the lowest dose possible). I'd never take codeine or tramadol and 'fortunately' steroids did nothing for me. However I'm quite broad-minded about adding in other things.
I hope you're getting all the necessary blood tests to monitor your kidneys in particular - my rheumatologist said that neglecting those could have disastrous consequences!!
Thanks for your thoughts on pacing, I think I'm prone to over-doing things on good days so that I can get all the things I want to get done before I get ill again.. which of course is self-defeating! It's really hard to pace myself but I am getting better over the years. I hadn't thought of asking for GP referral. I've heard about the pain management course and that it's really good. Perhaps I'll give it a go. x
First, when taking "natural" approaches like herbal tea, herbs, or vitamins be very careful to avoid things that "boost" your immune system because those things will make you worse. Echinacea is a prime example.
Second you do not mention stress reduction, exercise, or environmental toxins. Diet is not enough.
Stress is the single biggest factor in lupus flares. Stress can be managed or reduced through mindfulness meditation, cognitive therapy, yoga, tai chi, chi qong and journaling. The more tools you use, the better you will be. The book "Full Catastrophe Living" by Jon Kabat-Zinn is a good starting point.
The Environmental Working Group has an excellent website where you can learn how to reduce toxins in your life. Their Skin Deep data base rates cosmetics and personal hygiene products for toxicity. The "Dirty Dozen/Clean Fifteen" list teaches you how to reduce toxins in your food without breakin your budget.
Managing lupus is a full time job, but you can do it.
Thanks gazorpf. Yes I've been careful to avoid immune boosting remedies like echinacea and gone for those with known anti-inflammatory properties.
I agree stress reduction is so important as well as getting enough exercise and avoiding enviro toxins.
I have a chemical free home where possible (use natural cleaning products, old furniture not full of fire retardants, use natural suncreams and don't wear make up or perfume, use natural washing powered etc)as I've noticed how sensitive to chemicals I am.
I aim to go for walks where possible and do some tai chi here and there, perhaps I need to do a little more -but not over-do it!
sorry things are extra tough for you dryad, but glad you posted about this. Yes, these great replies are helping me a lot to refresh my overall take on the tapestry of approaches we can weave as we manage lupus! Marypw & gazorpf mentioning relaxation & mindfulness makes me want to echo them sort of.....I think I remember you have been doing some of this already, but, for what it's worth here goes:
I've been meditating for many decades. Even so...i was also living hard & fast. As my version of Lupus got worse, say about 20 yrs ago (am 60 this year) my Alexander teacher suggested I meditate lying down flat with big cushion under my knees - even if only for 15 min each afternoon. At the time I was caught up in extra stress reorganisation at work, and couldn't lie down, so kept meditating sitting down...but a few years later, and redundant, I did start this lying down meditating thing and it really has helped me in many ways...especially in somehow empowering me to generally slow down and pace myself better...even redundant, and lame, I'm sorely tempted to do too much. Such a simple thing: no hype to it at all....just lie down and breath deeply and gently etc. only prob: these lie-downs get so cosy that mine have stretched way beyond 15 min!
Thank you all so much for your helpful comments. My internet is down so I'm slowly typing on my phone so forgive my short reply. I have used mindfulness meditation in the past so thanks for reminding me I will try the laying down one & the hypnotherapy one sounds great! Just found a local meditation centre so will start attending regularly. Will reconsider drug options too when I see my rhuemy. Thanks again will write more when able x
Hello - after several years of conventional medicine I have had enough. I am now seeing a Traditional Chinese Specialis who specialises in autoimmune disorders. He is based in Brighton at Avecenna Clinic which is 3hrs away from me but well worth it. The waiting time to see him is about 10 weeks as he's in high demand. I'm on month 2 now and I have seen some improvement. More energy, less aches, less constipation, improved face rash. I still use plaquenil, but will be coming off this, as they have a herbal equivilant. 3.5 years of high steroids has wrecked my appearance, muscles, skin & caused bone thinning. The only downside is cost. It is very very expensive. I also have weekly acupuncture for pain, burning hands & to help digestion probs. All my money is spent on treatment. I also use manuka honey but not sure if this has made any dIfference for me. Fuzzy xxx
Thanks for this Fuzzy. I really hope the chinese approach continues to help you and you are able to build on the positive changes that have started in your health. I didn't realise there was such a great chinese specialist for autoimmune disorders in my own city! I already have acupuncture regularly, which does help. I'm interested in the herbal equivalent to plaquenil, do let me know if this works. I might ask my own acupuncturist if he's heard of this, perhaps he could get me some. I've started the manuka honey, it's the tastiest remedy that i've ever had!
Thanks for all your tips everyone. Things have got easier I'm pleased to say. I think the ginger and manuka honey tea/cordial has been quite effective for general anti-inflammatory and pain reduction. I've also been using White willow bark tincture for pain relief too (usually to relieve headaches and general aches) and I've not really needed to take any other painkillers in the last month. So all good!
I saw my consultant and had encouraging blood test results: my ESR was still low at just 22 (same as in Nov 2012) and he said "Continue with the diet and the remedies, as they are working"!
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Keep your chin up and I hope you find something that works for you 
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